# Joint pain, what will make it stop?



## dahlfacepoet

I have no official dx, but GI thinks early CD. I just started on Budesonide to see if I respond. I've been having awful joint pain, which I know is not uncommon, but I don't know how to cope with it. The tramodol I take for my abd pain does not even touch my joint pain. 
I have a rheumy appt in late November.
My pain is very erratic though. One day my hand will hurt too much to use, then the next day my hip will hurt, but it's tolerable, then my hand will hurt again a day after that. Right now I'm dealing with awful right shoulder pain that limits my range of motion more and more as the day passes. I also experience pain in my back and knees quite often.

Is there anything I can do to help it? Anything at all?
I'm also confused on what will happen at my Rheumy appt. What is arthritis and does it occur all over the body like that, or am I experiencing pain associated with my illness? Sorry if these are stupid questions and thanks for any replies.


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## Chris_

Hello!I was on prednisone and budesonide for 3-4 months.I had awful joint pain as well.Ankles,knees,hips and shoulders.Some days my shoulder pain was so bad that i couldn't lift my arms to take my shirt off.Now its about 2 months after i stopped taking them and i have no pain at all.

You should see your rheumy of course but dont worry too much.Its probably just a sideffect and you will be ok after you stop.


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## tiloah

Prednisone got rid of my joint pain but while I was tapering off of it it became excruciating. I now have a prescription for Celebrex for the joint pain, but I haven't used it yet. I have been off of the Prednisone for a while now and the joint pain is much better. The pain initially started when my gut symptoms were out of control (I had surgery). Just like you my joint pain moved around a lot. Sometimes turning door handles or putting the gas cap back on my car was near impossible.

Hopefully the rheumatologist will have an answer for you. Celebrex is an NSAID (although it's supposedly engineered to not damage your gut), so I am wary of using it. It's definitely not an ideal treatment. I hope you find something that works for you and you get that pain under control. In the mean time I'd recommend a hot tub or warm baths if you can.


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## Cat-a-Tonic

Dahl, I've got chronic pain in my hip which was initially diagnosed as arthritis (the diagnosis was just changed to bursitis).  Physical therapy helped quite a bit - my GP was the one who initially wrote me a referral to PT, and the orthopedic surgeon I just saw said that he can write me another referral if I feel that I need to do more PT in light of the change in my diagnosis.

Long story short, it can't hurt to try physical therapy.  It sounds like you've got a bit of a wait until that rheumy appointment, so you might want to talk to your GP in the meantime and see if he/she can give you a referral.  (Make sure your insurance covers it too - I was told that not all insurance will cover PT, but fortunately mine does.)


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## Gue33

I have the same stupid questions, so they can't be stupid.  It made no sense to me either. My pain has subsided, but from June to October, it did the same thing to me as you are experiencing.    I took 10 mg of Ketorelac and Tylenol Arthritis and it took the edge off.  That was the best I could find. After the last Remicade infusion it has gotten much better. I cringe to think what I will do when it comes back.


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## dahlfacepoet

I wish I could take a hot bath, but heat makes my symptoms go crazy, I've come close to passing out in the shower, I just feel awful afterwards. Which causes me to either wake up hours early to take a shower or shower at night. 

Cat, I've had bad experiences with PT. A few years ago I was electrocuted and received nerve damage  in my right hand. I had to go to PT in order to get movement back to my fingers and shoulder. My PT was very upset with me and believed I was faking. He paid no attention to me while I was there and I eventually stopped going to my appointments and just did the exercises at home. But I was also going through some pretty rough depression since my injury put me out of work and I never got my worker's comp. Maybe that had something to do with it. 
But I don't have a GP (another long story), so I guess I'll have to wait for a rheumy appointment or complain again at my GI appt in a couple of weeks.
Though you did give me the idea to contact my cousin, he works as a PT, and actually helped me more during one christmas visit than my other PT did in 6 weeks.


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## tiloah

The same thing used to happen to me! I absolutely hate bathing for that reason but it has improved a lot (I dunno why). Showering used to make my face become extremely red and itchy. Bleh!

I hope your joints feel better soon though.


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## soloman69

*Remicade really works on arthritis*

Remicade - I didn't even know I had arthritis - until i lapsed on a treatment due to financial situation.  Was so bad I couldn't walk - it was in the bottom of my feet, my ankles, my knees, my elbows, my wrists, my fingers, and my hips.  BRUTAL
I would not wish it on anyone and so can totally understand your plea for some relief.  Remicade keeps mine at bay - but I wonder if while it's working on that - its not working so effectively on my crohn's.

Best Wishes


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## pjmel

> My pain is very erratic though. One day my hand will hurt too much to use, then the next day my hip will hurt, but it's tolerable, then my hand will hurt again a day after that.


This has also started happening to me. At first I thought I was getting arthritis, now I am not so sure. I started getting pain in my knees, elbows and fingers, but now it is in different places at different times. Sometimes the area that is painful is red, but that is not for all places. It is in the joints and also in other places. I have gone through thinking I have arthritis to gout now fibromyalgia. The pain killers I am taking barely even dull the pain. Hopefully will have dr appt next week to start getting some answers.


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## scifi-enthusiast

Started to happen to me these past couple of months on Humira. But it didn't become excruciating until the weather started to change down here. It barely started to go from 104°F to 93°F. I now have to walk with a cane because of the pain. But whatever, it makes me look more mature...

I went to go see a Rheumatologist and saw X-rays of my fingers. It was amazing, even an uneducated hillbilly would be able to see the inflammation clearly. She put me on Sulfasalazine which doesn't seem to help much. Though I'd rather be in pain than have the feeling the pain killers give me (nausea, vomiting, etc).  We're still waiting on the results for R.A., gout, and degenerative arthritis (my dad has all three). These tests do take time so you need to be patient.


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## Spooky1

i have this too, and have had it on and off since teenage.  i know how the joints do their magic too.   one day one hand is totally red and flared, next its moved to a knee.  when it all happens together there is no getting out of bed without help.

i also experience nausea in hot water.

you have my understanding and sympathy


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## JohnnyRottenAppleseed

scifi-enthusiast said:


> Started to happen to me these past couple of months on Humira. But it didn't become excruciating until the weather started to change down here. It barely started to go from 104°F to 93°F. I now have to walk with a cane because of the pain. But whatever, it makes me look more mature...
> 
> I went to go see a Rheumatologist and saw X-rays of my fingers. It was amazing, even an uneducated hillbilly would be able to see the inflammation clearly. She put me on Sulfasalazine which doesn't seem to help much. Though I'd rather be in pain than have the feeling the pain killers give me (nausea, vomiting, etc).  We're still waiting on the results for R.A., gout, and degenerative arthritis (my dad has all three). These tests do take time so you need to be patient.


is the arthritis a side effect of the Crohn's medications?


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## pjmel

I went to the dr this week, said that I might have glandular fever as the very intense pain I am having started after I had a flu. He said that it might also be an auto-immune response to the flu, but could also be rhuemetoid arthritis (possibly caused by crohns). Had some blood tests, so have to wait and see. Don't think there is going to be any quick fix to whatever is going on with me at the moment! On the plus side my belly is behaving itself! Have to be thankful for something! 
Johnny O - as far as I am aware the medications for Crohns can cause arthritis (the warnings for humira say to make your dr aware of any new joint pain), but I think as crohns and arthritis are both auto-immune diseases, sufferers of Crohns often get arthritis. I am not sure of the stats or the rates tho.


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## Gue33

My pain is back with a vengeance.  I had two weeks of reprieve after my Remicade infusion and that's all.  I've had exrays for arthritis and swelling of my joints, nothing showed.  It's like it's taking every little pain I had and amplified it.  What is the most troubling is the pain in my chest, my heart pounds when I really hurt bad.  My blood pressure measures normal.  I started and excel spread sheet and set the pain level, meds, BM's even period to numbers.   I took pictures of the swelling when I could catch it as well.  It really helped my Dr to see what was happening.  No solutions yet, but we are working on it.  Mean while I am using Ketorelac (Toradol) and extra strength tylenol for the pain and Elavil to try and get some sleep.  My honey has to help me put shirts and socks on and help me lay down and get up.  If that hurts to much I try and get some rest in the recliner.  Works somewhat, I am exhausted most of the time.  I have a real appreciation for the handicap toilets with the bar on the wall.  Nothing like being stuck in a bathroom stall, because you can't get off the john.


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## Spooky1

hey, i know how difficult it is to 'fling' yourself backwards onto loo, and then get off again.  and then fling yourself backwards onto the bed and try and swivel around.  someone else like me then.  yaaay.


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## sunflower

Here is a very helpful article on IBD and arthropathies!
http://www.medscape.com/viewarticle/750045


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## beth

pjmel said:


> Johnny O - as far as I am aware the medications for Crohns can cause arthritis (the warnings for humira say to make your dr aware of any new joint pain), but I think as crohns and arthritis are both auto-immune diseases, sufferers of Crohns often get arthritis. I am not sure of the stats or the rates tho.


Joint pains correlated with Crohn's medications can be a sign of an allergic reaction, not that they cause arthritis. Crohn's itself can cause arthritis as in Crohn's Related Arthritis and other extra-intestinal manifestations.


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## Mountaingem

I have enteropathic arthritis, which is almost always a precursor to a flare, and reactive arthritis, in addition to enthesopathy of the left knee and hip. It's really important to see a Rheumatologist to figure it all out. 

Like Sci-fi, I have flares directly related to hot weather, and often use a cane in the summertime.

Just a thought, but I noticed you are on Entocort, which is a steroid; have your calcium, magnesium and vitamin d levels checked. When I took it, my joints and bones hurt so bad and I found out it was due to extremely low levels of these vitamins.


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## JohnnyRottenAppleseed

I like your Michael J Fox quote


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## pjmel

Well I have a diagnosis of what is wrong with me at the moment (apart from the obvious!) - I have dengue fever! I still think I have some arthritis as well, but the majority of the pain that I am having in my joints and muscles is from dengue. SO relieved to have a diagnosis.


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## Crohn's 35

pjmel said:


> Well I have a diagnosis of what is wrong with me at the moment (apart from the obvious!) - I have dengue fever! I still think I have some arthritis as well, but the majority of the pain that I am having in my joints and muscles is from dengue. SO relieved to have a diagnosis.


I have been on this forum for  many years and I still learn something new...never heard of Dengue fever, so I Googled it and just wondering how did you contract it?


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## ChattieCathy

*joint pain too*



dahlfacepoet said:


> I have no official dx, but GI thinks early CD. I just started on Budesonide to see if I respond. I've been having awful joint pain, which I know is not uncommon, but I don't know how to cope with it. The tramodol I take for my abd pain does not even touch my joint pain.
> I have a rheumy appt in late November.
> My pain is very erratic though. One day my hand will hurt too much to use, then the next day my hip will hurt, but it's tolerable, then my hand will hurt again a day after that. Right now I'm dealing with awful right shoulder pain that limits my range of motion more and more as the day passes. I also experience pain in my back and knees quite often.
> 
> Is there anything I can do to help it? Anything at all?
> I'm also confused on what will happen at my Rheumy appt. What is arthritis and does it occur all over the body like that, or am I experiencing pain associated with my illness? Sorry if these are stupid questions and thanks for any replies.


Hello and I am new on this site. Guess I'll just enter something here.
My crohns is mild and I take pentasa. This certainly sounds familiar. Tried glucosimine, therapy, orthopedics, acupuncture and tested for arthritis. Finally I saw a nutritionist. the best relief is to cut out all processed foods. That's processed meats including breakfast meats. No more processed cheese slices. Read the labels, cut out all additives and preservatives, even store bought bread. Try living on cooked vegetables, meat (no sauces), fruit, eggs, butter. Salt is ok and cheddar seems to be ok.  Pickings are slim but I can function. I have a special blender smoothie every morning and would be happy to share the recipe. There is such a thing as leaky gut syndrome. Not sure if this is connected to crohns.


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## Mountaingem

:ywow: OMG Pjmel-that's awful! I have a close friend who contracted Dengue in Puerto Rico from sleeping out overnight on the beach-the mosquitoes that carry it bit him all over. He was extremely ill, and he is a healthy young guy,no autoimmune disease. Please take good care of yourself!:hang:


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## pjmel

Thank you for your kind words, Mountaingem. I am just so glad that I have a diagnosis. I was worried I would go to the dr and the blood tests would have come back negative for everything that they tested me for. I have been in so much agony and have been so tired, I said to my dr that I have never been so happy to hear I have dengue fever!
Pen, I live in North Queensland, so we have a fair few mosquitoes here, so could have been bitten just sitting outside, but I did go camping at the end of September so I think I contracted it then. 
I am just taking things slowly, getting lots of rest, taking pain-killers if needed - even though the ones I am taking aren't recommended for crohns sufferers I don't think I could cope if I didn't take them.


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## Regular Joe

I'm with mountaingem on the enteropathic arthritis. It's a prodrome to my flareups. My rheumy prescribed sulfasalazine, and it's the sulfa, not the 5ASA that helps the arthritis. In fact, I switched back to sulfasalazine after Pentasa. So I take 2G sulfasalazine now. It does help with the joint pain.


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## ChattieCathy

Hello Joe. Thanks a lot for the info. I'm still looking for answers and alternatives. It is so hard to give up cheese, milk, and bread. I had it figured that I might be only sensitive to the additives and preservatives. Ate the cheese and bread, had the milk in my tea and I'm in pain again. I have a breakfast smoothie and sometimes go all day without anything because it's just too hard to pack cooked vegetables in a thermos. I will certainly look up sulfasalazine. I am waiting to see a specialist. I'm glad you found a solution and thank you for sharing :ylol:


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## jessyy21

heya guys... 
im going through the pain too! right now to the point where if i walk 100ft i get extreme pain in my ankles, shins (the sides) and my hips to where i have tears in my eyes... i always thought it was because i was big... everyone else thinks im just lazy
but now at least i know 
i have a rheumatologist app on the 8th and i have my endo and colo on the 6th

i hope i can finally get relief and some treatment.... ive been undiagnosed now for 27 years and im to the point where i cant leave my home


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## mickey

I found myself having extreme difficulty and pain a few years back each time I would come home from watching a movie at the theater.  I attributed it to sitting a few hours without moving, never thought much of it until I could hardly move my knees.  Orthopedic surgeon could feel the stiffness and joint problem and then next week it was the other knee and back and forth.  Knuckles did the same thing.  Long story short...found out I was allergic to corn (popcorn at theater each time) and my joints would swell.  That was the start of my discovery of how foods can adversely affect your body and cause inflammation.  Something so simple!  Anyway, University blood tests showed much negative and only slight reaction to strawberries , when tested.  I knew that was wrong, since I had been in emergency room for anaphylaxic shock twice in past month for supposed tuna allergy.  Anyway, NASA developed an allergic test that some docs use (used in Germany hospitals, I'm told) and as soon as they began the test a two page list of items that caused allergic reactions in my body popped up on the screen.  It was amazing.  The doc said foods are a more powerful drug and tend to have more side effects than meds.  As soon as I eliminated corn (and some other foods) I was able to walk around as a normal person and joint swelling went away! Listen to your body and watch what you put into it.  It will tell you when something is off!  

Glad to hear your problem had a quick diagnosis, but keep the above in mind as well!


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## tiloah

Can you find out what tests those are? I would be very interested to know.


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## mickey

I have noted below the doc I used.  Her office can probably give you the name of the allergy test that is done on the computer and see if someone in your area does this as well.  Quite amazing.  Also tells you what organs in your body have inflammation, etc... fascinating and definitely works!
Martha H. Howard
MD, Dipl. Ac. NCCAOM
Chicago
(773) 935-6377
info@wellnessofchicago.com
www.wellnessofchicago.com
Dr. Howard’s Blog: Allergies


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## outlier

i had a lot of pain that seem to be all over the place and it was really being so malnurhished from the crohn's

it could also be reactive arthritis which is short term arthritis associated with stomach issues (as well as a few other conditions). talk to your gi. getting your gut under control might do the trick


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## ponygirl

my boyfriend has severe CD and experiences really bad joint pain. he has osteoporosis in his spine, but get bad pain in his legs as well, especially at night (not good, he's exhaused all the time already so needs as much sleep as poss). due to the crohns he cannot take anti inflammatories. he is currently on humira injections which apparently is meant to stop joint pain caused by CD. has anyone else experienced this? any advice greatly appreciated X


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## tiloah

Which joints in his legs are affected? His knees? Does he sleep in an ergonomic position?


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## ponygirl

yes, it is mainly his knees but also his lower legs. He tends to sleep on his side?? (sorry, im not quite sure what you mean!)


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## beth

ponygirl said:


> due to the crohns he cannot take anti inflammatories. he is currently on humira injections which apparently is meant to stop joint pain caused by CD. has anyone else experienced this? any advice greatly appreciated X


Yup. 
Is he on weekly injections?... because he could be, if not he should ask his GI. I found the usual fortnightly injections not enough. Weekly helped by Crohn's and joint pains.


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## ponygirl

thanks, yeah i don't think this has been suggested but i guess if he asks (joints are causing alot of pain and stopping him sleeping etc) GI may consider this. were u prescribed the humira to tackle both the crohns and joint pain??


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## beth

In theory only the Crohn's, but it's helped my joints alot. GI's don't tend to care about joint pains and just refer you to a rheumy, who note you are on Humira and says that'll do then. I guess some of them might try adding in DMARDS like hydroxychloroquine but I found before that it did little.


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## tiloah

Ergonomic... means like good for your body, spine, etc. On your side it would involve having a pillow (they even make special ergonomic ones) between your knees. When you lay on your side without one, it puts a lot of pressure on your spine. If I don't sleep with a pillow between my legs I get awful sciatica, which mainly shows up in the form of leg/outer thigh pain. With osteoporosis on board I can imagine sciatica could be a possibility.

By lower legs, do you mean ankles? I'm asking because from your descriptions it doesn't really sound like joint pain (although that may be the result of you telling us rather than the person experiencing it). There aren't any joints in the lower legs, from the knees it would be the ankles and feet. I had crazy bad joint pain in my toes and fingers when I had problems with that.

How long has he been on the Humira? It's possible it could help once it reduces the inflammation. Do his joints become red, hot, or swollen? It may be worthwhile to consider Celebrex. It is an NSAID but it is SUPPOSEDLY not as dangerous as aspirin and the like. So it is considered safe for us to take. But it's at your own discretion. In a case as severe as his (where he can't sleep) he should weigh the pros and cons. He probably should be seeing a rheumy though, because it sounds pretty severe. Good luck.


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## ponygirl

thankyou. the osteopath said something about sciatica. he has been on the humira since february this year following surgery.......he doesn't seem to get any redness or swelling.


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## beth

Some GI's are really down on celebrex/etoricoxib/etc as whilst they have much less gastro downside they do still thin the mucosal lining to some extent. A rheumy prescribed etoricoxib for me but my GI said no way. So I get by on opiate pain relief patches and top up with codeine.


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## tiloah

I have been told by my GIs that it's fine to take a regular NSAID every once in a while; I am unconvinced. You have to decide for yourself if it's worth the risk (of course, unless your doctor says NO WAY). I haven't been taking any NSAIDs including the Celebrex because I don't feel it's worth the risk. But if you're truly desperate, it's an option.


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## scottmyster

Hi Dahl, I have the same problem i have Crohn's disease and have had it for 25years now and joint pain and i have degenerating joint disease. I don't know it this is useful or not but i have found that taking Glucosamine,Chondroitin, and MSM worked wonders for me and  i take acetaminophen every 4 to 6 hours at a time . They GL,Cho, and MSM usually come in the same bottle. Just take it as the instructions says and this could help alot, sense it don't interfer with other medications. Just a suggestion, take care.:rosette1:

Scott


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## Nichole

I was dx with Crohns Disease 6 yrs ago. I suffered from extreme joint pain until I started taking cymbalta last year. The pain was related to the inflammation in my large intestines & other areas of my body. The joint pain moved around - very inconsistent in location but severity was high. Cymbalta helped amazingly with the pain. I'm not sure why. I've never had problems with depression, which I was told is the main reason for taking this drug. Oh well. It works for me. This is the only drug I take on a regular basis... Besides ibuprofen about 3 days a week & the occasional medication for abdominal pain. I only take predisone & other meds when absolutely necessary.


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## David

Nichole said:


> I was dx with Crohns Disease 6 yrs ago. I suffered from extreme joint pain until I started taking cymbalta last year. The pain was related to the inflammation in my large intestines & other areas of my body. The joint pain moved around - very inconsistent in location but severity was high. Cymbalta helped amazingly with the pain. I'm not sure why. I've never had problems with depression, which I was told is the main reason for taking this drug. Oh well. It works for me. This is the only drug I take on a regular basis... Besides ibuprofen about 3 days a week & the occasional medication for abdominal pain. I only take predisone & other meds when absolutely necessary.


Hi Nichole and welcome to the forum!  If you'd be interested in sharing your story in our your story forum, we'd love to get to know you better and properly welcome you!

Is your GI aware that you're on ibuprofen?  I ask because it's known to cause all kinds of problems for people with IBD.  And have you had your vitamin D levels checked?  Many people with Crohn's Disease are deficient in vitamin D and proper supplementation can help a lot with joint and body aches.


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## hugodazzle

I know exactly how you feel.  The same is happening to me.  Random joints.  One day certain joints and then other days other joints.  I was told mine was crohns arthritis.  I too have been looking at the symptoms of fibromyalgia and I feel sometimes that it could be that.  I have had drug induced lupus in the past and all my joints hurt me then.  Are you on a anti TNF drug because it could be worth you asking about drug induced lupus when you see your rheumatologist.


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## jxarias1

Oh my dear God...I am not alone! Glad to know that I'm not going crazy after all. I have been diagnosed with Crohn's disease for fourteen years now...started with aching knees about three years ago, but nothing compared to now. (Under remission for Crohn's now.)

This past September I started noticing swelling and pain in my fingers, knuckles, and wrists. Thought I was experiencing carpotano since I do much data entry. Went to an orthopedic surgeon...said I did not have it...suggested I work out. After that, the pain left.

It came back with a vengeance this January...swelling of the fingers, wrist and elbow inflammation, knee pain, and randomly toe inflammation. SO I saw a rheumy doc...diagnosed me with arthritis of Crohn's disease...bumped up my Remicade shot to 8kg, had me on Prednisone and Sulfasalazine. 

Three weeks after my infusion, all joint pain came back again. Was told to get back on steroids...and still taking Sulf..meds. Awaiting my next Remicade shot...bumped now to 10kg...Trial and error I guess!!! 

Joint pain has become quite a nightmare...can't function very well.


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## Cavatina

*Awful pain*

Suffering from dreadful pain all over. GP says it's caused by my Crohn's. Getting worse - also exhaustion - sleep a lot. Going to see my Consultant on Moday so maybe she'll come up with something. I'm going to get vitamin levels - as suggested by David - so it may be that?? I've tried all the different pain killers and now on 'Butrans' patches, which help a little. Hope Monday is successful - I will post anything useful coming from the meeting. Good luck and best wishes to all who are suffering this - it's horrible!!


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## David

Cavatina said:


> I'm going to get vitamin levels - as suggested by David - so it may be that?


It can be a contributing factor and proper supplementation can make a big difference if you're indeed deficient.  But I wouldn't go so far as to say it is only vitamin deficiency in most cases.  It is most definitely worth getting checked.


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## JohnnyRottenAppleseed

The crazy thing is chrons and arthritis are all caused by inflammation. They can call it fancy fancy names, but it's all a name for inflammation. I've. Eek getting these arthritic pains as well. Is it aging? I'm almost 37. I'm trying to eat more ant inflammatory food, tea, supplements. It helps a lot. I read Nettles tea is supposed to be good for arthritis. I drink it sporadically. My fiancée uncle cured himself of prostate cancer. Y drinking a liter of nettles tea everyday for a year.


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## Cavatina

Hi - thanks for that. I do try to eat food with antioxidants. lots of different colours etc. Have low fat foods. Hoping it helps a bit. My husband is being treated for Prostate Cancer right now so we're watching both our diets!! Great fun!! Haven't tried nettle tea but will have a go - anything which might help!


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## Manatey

I have had joint pain for about 6 months that may be getting a little better since they gave me more vit to take a few weeks ago but I have had severe muscle pain out of this world in the last 3 months. In the last 2 weeks its so bad there are days I stay in bed. The docs say its due to long term high dose steroids and will get better when they lower my dose.


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## Spooky1

i wish i could believe your doc.  i haven't had steroids for years.  i can't do much physically either.  when i exert myself i puke.  hope you get better though


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## jxarias1

Hi, Manatey and Spooky1. Two nights ago I tried one pill of Meloxicam (antinflammatory for arthritis) and it worked wonders...my sis randomly gave it to me hoping that my joint pain would go away. It did!!!

I was already taking Prednisone and Sulfalasazine and were only controlling the swelling of my joints, but not the constant pain.. 

In a couple of days, I will be getting my Remicade infusion shot (10kg)...hopefully this helps as well. 

Might want to ask your doc about Meloxicam. Hope you guys get relief.


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## Cavatina

*Joint Pain*

Hi all. As promised, and as suggested by David, I've been to see my Consultant and discovered the following details re my vitamin levels etc:

Vitamin D 62.8 (should not be less than 75)
Iron 14.4 (average is 14 - 28)
Sat 22 per cent (average is 15 - 50)
B12 359 (should not be less than 190)
Folate less than 20 (average is 3 - 15)

She seemed to think that the levels were ok and wouldn't be a factor in causing my extreme pain. Anyway, she has written to my GP recommending that I be referred to rheumatology. I had a blood test for that department as well, so once again, I'll wait to hear whether they can come up with a magic answer!! I very much doubt it but will try not to be negative. It's really difficult when I'm very tired and very 'down' due to the above. Thanks to everyone for comments and advice. Anything else would be welcome. In the mean time, keep smiling folks.


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## David

Not bad overall, good for you   I personally feel that B12 should be over 500 and D should be over 75 but I think your going to a rheumatologist is a good idea.  I hope they're able to get to the bottom of things.


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## Cavatina

Thanks David. I was quite pleased with what the Consultant said. I will, however, try to eat more Marmite (Vegemite in U.S) and try to get out in the sun more - if we ever have any! Best wishes

Chris


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## Spooky1

Sun, Cavatina?  aren't we in Britain? LOL


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## Cavatina

Oh sorry, I forgot!!!!!! We can hope. Spring *must*be here soon though?!!:ylol2:


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## ifeelsick

It's been a while since I've visited the site, but my joints are absolutely KILLING me today, so I did a google search and stumbled upon the thread...

After reading a few posts, I would like to give some clarification on the use of Celebrex for joint pain/inflammation on Crohn's patients. If your doc prescribes it to you, you need to seriously question whether or not it is the right medication for you. As most, if not all, of us know, nSAIDs can be severely detrimental to our condition(s), and Celebrex is exactly that. diesanduhr is right to be leery. Personally, I have never taken the stuff as I stay as far away from nsaids as I can. My dad, though, has severe degenerative arthritis and literally would not be able to move without it. Recently he has been having bouts of severe diarrhea, often bloody. He has never been diagnosed with any type of bowel disease, but since there are a few in our family that do have severe digestive issues, he got it checked out. They did all the typical diagnostics and found nothing. He recently moved and is now under the care of a new doctor. When the doctor compared his symptoms to his medications, he said that if all the previous tests came back negative, then it is most certainly the Celebrex causing the painful, bloody diarrhea. 

I know all our bodies react differently to certain medications, but I just wanted to make it known to everyone that Celebrex is no different from any other nsaid. As far as I can tell anyway. If it'll make someone who doesn't have IBD have bloody diarrhea, just imagine what it would do to us. So yeah...it's probably best to stay away from that stuff.


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## head_above_water

Ah, the joint pain.  When I have flares it tends to get worse.  I've had it in my shoulders and now I have it all the time in my left knee.  I did not have joint pain before my diagnosis.  Since my MD has forbade the use of NSaids, I take Tylenol. I also get massages - but they only help for a little while...


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## JohnnyRottenAppleseed

I wonder is cipro is causing my joint and tendon pain?


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## ifeelsick

JohnnyO said:


> I wonder is cipro is causing my joint and tendon pain?


If you are taking Cipro, and experience sudden joint pain or tenderness, stop taking it immediately and call your doctor! This can be the sign of an allergic reaction. Cipro is a strong antibiotic, and while it will probably disrupt the balance of your gut flora, it should NOT be causing you joint pain.


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## JohnnyRottenAppleseed

ifeelsick said:


> If you are taking Cipro, and experience sudden joint pain or tenderness, stop taking it immediately and call your doctor! This can be the sign of an allergic reaction. Cipro is a strong antibiotic, and while it will probably disrupt the balance of your gut flora, it should NOT be causing you joint pain.


It does long term I've been off it for almost a year. I will post a thread about Cipro and tendon and joint pain. I know I'm not the only one.


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## pjmel

I posted late late year that I had been diagnosed with dengue fever (a mosquito borne virus that causes joint pain/fatigue etc). I went back to the doctor a week or so after I posted and was told that it *wasn't* dengue fever (further blood test results had been received), but looking more like lupus. (Apparently the lupus can give false positive readings for all sorts of things??) The joint and muscle pain progressed quite severely, to the point where I couldn't walk or lift my arms or even open a bottle. Have had a referral to a rheumy (I live in North Queensland and the wait is ridiculously long - up to 2 years for urgent cases), saw my GI for a general appointment. She seems to think that it could be drug-induced lupus from the humira, I am no longer having the humira injections so I am hoping that the lupus goes away. I have also been taking a course of steriods which helped get rid of the pain almost immediately - it was a huge relief even though I got quite a few of the side effects - night sweats, uncontrollable hunger, moon face etc. I am down to 5mg at the moment and the pain is starting to come back which is quite distressing because I know what is coming if the pain gets as bad as it was. I am crossing my fingers that once the humira is out of my system I will be well again.


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## head_above_water

Oops! Johnny O! I should change my signature...I'm not currently on Cipro. I'm currently on 6MP and Apriso.  I was on Cipro for a year...but my joint pain is not specific to my time on Cipro.  It tends to jump around and it's in my left knee now.  Of course, if you didn't have joint pain before taking Cipro and now you have it...I would talk to your MD.  Isn't it so hard to tell sometimes what is from the IBD and what might be a side effect?


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## Judith

Hello Jessyy21,

I _literally_ feel your pain! I had rheumatic fever back in 2002 that went into my nerves and joints that was so painful I was in agony constantly and saw every specialist and took every medication available at the time. Finally, my (now) husband convinced me to go to the Harvard-affiliated, Brigham and Women's Hospital in Boston, MA. It was difficult to convince me to go since I had seen every specialist in my area and was extremely disenchanted with the profession as a whole.  I was wrong.... and finding a doctor that "gets it" can change your life.

Sorry about the long diatribe but here are my answers to your questions.

What makes it worse:
1. Your pain is erratic because many things affect it.  For me, weather is a big one. Increased pain will result from damp cold and/or a low pressure system moving in. I can tell if it is going to rain far more accurately than any weather person on TV.

2. I have many many environmental and diet allergies that were diagnosed after the rheumatic fever. A HUGE factor for me is my diet. If I drink milk, eat soy, or have anything with wheat in it my joints are a disaster for at least 3 days. I was unaware of this connection because the joint pain due to food does not increase until 1.5-2 days after I eat the allergen.

3. When I am getting sick, before I exhibit symptoms, my joints know it. It feels just like it is about to rain but instead of it raining, I am actually getting sick. This actually results from your immune system fighting off the infectious agent. In the normal immune reaction, immune complexes will build up in your joints. For us it is painful because our joints are already irritated.

What does and does not work

1. Laying in bed hoping the pain will just go away DOES NOT WORK. This will actually make things worse. A vicious cycle will begin in which your joints hurt then your muscles will spasm and tighten around your nerves which cause your muscles to spasm and your joints to hurt.... etc etc.  The most difficult thing to do is to get up and move.  The best thing for your pain is to get up (put on warm clothes if it is chilly at all) and do any movement that does not cause impact on your joints. Swimming is excellent (if the water is warm and you will not get cold when you get out), or a hot tub with stretching, take a bath and stretch in the hot bath (this is what I do). Yoga is probably the best thing as far as I am concerned. It is very low impact on your joints and works every muscle, ligament and joint in your body. You would be surprised how a tight hamstring can wreak havoc on your neck. Yoga has helped quiet the shooting pain down my legs. Now the shooting pain is nearly gone.

2. A decent TENS unit will be your best friend. A TENS (Transcutaneous electrical nerve stimulation) device coupled with a nice warm heating pad can do wonders for your joints. Using electric shocks to help your arthritis sounds awful but it is really wonderful and feels like a massage chair and not like electric shocks at all (unless you put an electrode directly on a bony process like your knuckle- dont do that- ouch!). I highly recommend a TENS. 

3. Unless you see an excellent pain specialist you will be prescribed opiates for your pain. OPIATES DO NOT WORK! I have taken every opiate that exists (I am not kidding). Non-pain specialists were prescribing these drugs to me like they were candy. I was on everything.... Tramadol, Vicoden, Vicoprofen, Percocet, Oxycontin, Ultram, Ultracet, Hydromorphone, Fentanyl/Duragesic, etc. None of these drugs even touched my pain except the Fentanyl but this drug made me so nauseaus I had to take an anti-nausea drug that made me so out of it I barely knew my name. The funny thing about chronic pain is that even if an opiate initally helps with your pain the pain will quickly break-through that dose and require you to up your dose again and again until it does not work at all.  My pain doctor knew that. This is what he prescribed: 25mg Nortriptyline (I also take Flexril as needed). Initially I was seriously irritated. I have been taking Fentanyl plus about 14 other medications to combat my pain and he wants to take me off all of that and give me this Nortriptyline???  at a dose far lower than therapeutic doses for depression??  He was right.  He was SO right. Nortriptyline is off-label for use on chronic pain and the dose is much lower than what they start you at when given as an antidepressant.  I know that chronic pain and depression go hand-in-hand but they are treating your pain with this dose they are not treating you for depression. But when your pain is managable you automatically become less depressed (novel concept). My pain is not completely gone but I can deal with it now. It is secondary to my life.  Often, I do not think about it at all.... unless of course it is about to rain.........

Hope it helps


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## Cavatina

*Very interesting!*

Hi. I've just read your story. It's given me much food for thought. I'm on Butrans patches, 30mcg per hr. Used once a week. My GP has tried all sorts of other pain killers. Several other opiate patches, but these are really helping with my pain. They don't take it all away but they're the best I've had up to now. I can't take oral pain relief as I don't have enough bowel to absorb it and it also irritates my stomach in a big way. Also, as I have a stoma, I can't take anything containing codiene as it slows my system too much and I may have a blockage, as has happened lots previously. You're absolutely right! I have depression a  lot and I feel sick and take anti sickness tablets. It drives me nuts!!! Anyway, I have an appointment with rheumatology on 20th April so I'll tell them about you and ask whether taking the Nortryptiline would be any good for me.  The only thing is, it would worry me as I read last week that people who take TEMAZEPAM to try to sleep are at much greater risk of dying. Did you hear anything about that? Are they similar to your tablets? It was in my local newspaper.

Very interesting reading anyway - thanks a lot for that


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## Judith

Cavatina said:


> Hi. I've just read your story. It's given me much food for thought. I'm on Butrans patches, 30mcg per hr. Used once a week. My GP has tried all sorts of other pain killers. Several other opiate patches, but these are really helping with my pain. They don't take it all away but they're the best I've had up to now. I can't take oral pain relief as I don't have enough bowel to absorb it and it also irritates my stomach in a big way. Also, as I have a stoma, I can't take anything containing codiene as it slows my system too much and I may have a blockage, as has happened lots previously. You're absolutely right! I have depression a  lot and I feel sick and take anti sickness tablets. It drives me nuts!!! Anyway, I have an appointment with rheumatology on 20th April so I'll tell them about you and ask whether taking the Nortryptiline would be any good for me.  The only thing is, it would worry me as I read last week that people who take TEMAZEPAM to try to sleep are at much greater risk of dying. Did you hear anything about that? Are they similar to your tablets? It was in my local newspaper.
> 
> Very interesting reading anyway - thanks a lot for that


Hi Cavatina,
I am so sorry you are having to deal with so many health issues. I am surprised you are on Butrans and you are on a high dose too. Any narcotic will constipate you (i.e. codeine or Butrans) so I am worried you might get a blockage with your stoma on the Butrans patch. I really feel for you. Chronic pain is awful, especially if you cannot get away from it. When I would sleep (rare) I would even dream that I was in pain. I know taking those anti-nausea drugs if they work can make you feel loopy exacerbate depression symptoms (primarily because that is their mode of action).

Good luck with your rheumatologist. Just so you know the nortriptyline use for pain is off-label and I had previously seen many many doctors for the pain and none had suggested this drug. Also, you will need to take it every day so it builds up in your system and it will take about 2 weeks to see an effect (that is what they tell you but I saw an effect in about a week or so).  Every doctor previously had just given me another opiate. They may work for acute pain but not chronic pain. Nortriptyline may also have a constipation or diarrhea side effect. I will look up the rates for you but just so you know I didnt have any issue with it. And the doses you are taking are like 25mg and for the on-label use for depression they start the doses at around 100mg. I really like the idea of less drug in my body! NO nausea at all, in fact it did not feel like I was taking anything at all. And, I slept so much better. Not just due to the pain decrease but because of the drug. 

Regarding your temazepam question.... totally different drug. I have taken it though (I have taken everything seriously). Temazepam is used for sleep. Brand name is Ristoril. I do not like that medication because the half life is too long and I would wake up in the morning with the "hangover effect". I also do not like Ristoril because I had a reaction to it. I did not fall asleep and was mentally not competent. I had to be taken to the ER. It very likely interacted with one of my other meds. This is when I was on about 15 of them at once. The ER doctor looked at my list of meds (which I kept on me because I could never remember everything) and said he did not believe that I was on all of these drugs. I was though. I am pretty sure its a bad sign when a doctor doesnt believe your meds list.  

Are you looking for a sleep aid? Some people like temazepam. I am just not one of them. Also, temazepam you would take only on nights you have trouble sleeping, but nortriptyline is an every day type of thing. I took it at night because it is supposed to make you a little sleepy. If it does though, it is very mild. I could take it in the morning too with no problems.
Good luck with everything. I hope you have an excellent visit with your rheumatologist.


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## Judith

Cavatina,
I said I would look up the constipation side effects of nortriptyline. Here are the results. There was a study done back in 1970 about this (it is a pretty old drug). Patients were put on 50mg dose of nortriptyline for psychiatric symptoms. In the placebo group 43% of patients reported constipation during the study. In the nortriptyline group, patients reported constipation less frequently when they had been on the drug for a period of time. The study looked at patients on the drug for 1 week - 4 weeks. Here are the percentage that reported constipation:
Week 1: 61%
Week 2: 51%
Week 3: 44%
Week 4: 29%

At week 3-4 patients actually report constipation equal to or less frequently than placebo controls. The study also reported less frequent headaches in nortriptyline treated patients.

One side effect that did increase is "dry mouth". I have heard this is true more often with increasing doses. This side effect also appears to decrease over time.
Hope it helps!
Here is the study in case you want to check it out:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1820531/pdf/brmedj02156-0032.pdf


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## David

Judith,

You mention Nortriptyline.  Do you know if amitriptyline would work as well since they're in the same class?  I ask because low doses of amitriptyline are prescribed for IBD patients to help control other symptoms (such as abdominal pain) with EXCELLENT results so it would be nice if multiple issues could be controlled with one drug.


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## Judith

Actually, Nortriptyline is one of the metabolites of Amitriptyline (your liver makes Nortriptyline from Amitryptiline). Nortriptyline has fewer side effects than Amitriptyline (likely because it is given only as the active metabolite). I would think that many people would benefit from Nortriptyline especially since it has a very low incidence of side effects. But, as with any drug, just because it worked wonders for me doesnt mean it will work for everyone.  For example, I take Tylenol for a headache because Advil is useless. However, I know many people swear by Advil..... it just doesnt work for me.


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## jxarias1

Well, tapered myself off of steroids, but had to get back on them for tapering so soon. Had my Remicade shot also about two weeks ago. Did great until this week...went to Houston, TX for a 3 day conference. It was raining and humid. The swollen fingers, feet, elbows, and aching knees all came back!!!! Hard to explain to colleagues that were with me. No one really understands what we go through...


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## Cavatina

*Update re visit to rheumatology - sounds good!*

Firstly, thanks a lot Judith for info. re Nortryptiline really interesting - I don't get constipation with Butrans thanks. The doctor is going to put me on 
Nortryptiline to help me sleep, but from what you say, it should help with other stuff too - fingers crossed! The blockages I have are usually caused by adhesions re having had six major operations. Loads of pain - hell at these times. Luckily I haven 't had an incident for a while. It has, I feel, improved things since I stopped smoking three years ago.
Anyway, the visit to the new doctor in rheumatology was extremely encouraging. She was brilliant! Really listened to my history and thoroughly examined me in a way no-one has in the past few years. Even the Pain Clinic told me to go away and keep taking the tablets, two years ago!! After a consutation with the rheumatologist lasting around half and hour! Unheard of! She said that my problems are caused by Crohn's. She thinks I have inflammatory arthritis, accompanied by Fibromyalgia and Joint Hypermobility. Obviously, the effects of all these, plus the fact that I was in a hospital bed in 2001 for 9 months. Fed by tube for 7 months. On a life support machine for nine days. I'm very lucky to be here!  If anyone wants me to elaborate, I will, but it's a long story. Anyway, I digress! The new doctor, Dr Lane, who I will add to the list, has put me on a short, intense course of Prednisolone, for a month. (Bit scary!) She has written to my GP to ask her to give me Nortriptiline. I'm seeing her after a month, when she will do a blood test. Then she is going to give me Methotrexate and/or (I can't remember which) Sulfasalazine. She's also pleased I go swimming as it's obviously good to keep active. The next step in that is that she will refer me to a gentle circuit training six week course. It was such a revelation to think that someone was actually listening properly and knew what was wrong. Thanks to my Crohn's consultant for suggesting it. I had actually started to feel like a fraud because people were saying 'Why haven't your joints swollen? That's usually the case when you have arthritis" I don't feel bad any more because joints don't necessarily swell with my kind of arthritis!!!!! Does anyone know if I will struggle with the above meds. as I can't usually take anti imflammatories such as Ibrufen. Hope not. Thanks a lot for you interest folks. I'm so glad to have found you.


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## David

I'm really glad you found a Rheumatologist that you feel comfortable with!  That can make such a huge difference.    I like the idea of the circuit training course.  Let us know how you get on with everything.


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## Cavatina

Thanks David - great to have your input!


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## Cavatina

:ysmile:*Hi all - help!!!* I've been on the Prednisolone since 21st April, starting with six a day for five days, four for 5 days, then three for 7 days, reducing to one a day and finishing on 21st May. OMG!!! I feel so ill - is that normal? It's a bit confusing though because I was in hospital for two days last week with a bowel obstruction - much pain! Don't know if I'm sufffering the aftermath of that or if it's the steroids. I'm also wondering if my drugs are possibly reacting against each other. Went to the GP yesterday and she took me off Domperidone, which I didn't feel were helping with the huge nausea, which is my main, and most difficult to handle, problem. She gave me Gaviscon to take four times a day but it doesn't help much at all.  The only time I don't feel sick is when eating or sleeping. The Butrans were making me feel sick but it's much worse now. The pain is slightly improved but it doesn't seem worth it as I feel so bad. At the moment I'm taking 15mg Lanzoprasole and 135mg Mebeverine in the morning. Gaviscon, four teaspoons four times a day. Butrans patches, 30mcg once a week. Risedronate once a week. In the morning I also have Glucosamine, Multivitamin, and Cod Liver oil tablet. I have Paracetomol when necessary. The GP wants me to stop the Lanzoprasole if the Gaviscon works and when that has been stopped for three weeks, she wants to do a test to see if I have some sort of infection. Does anyone have any
ideas about what my problem may be and how to resolve it? The trouble is, my problems are complex and three different doctors are trying to help. Do I hang in there and see what happens? My next Rheumatologist appt. is on 29th May and Gastro Consult. on 11th June. That seems an awful long time away right now!! I feel as if I want to stop all the meds. and start again!!


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## David

Cavatina said:


> In the morning I also have Glucosamine, Multivitamin, and Cod Liver oil tablet.


I'd try stopping those three for a few days and see if it helps at all.


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## Cavatina

Thanks David, I'll try that. I'll let you know the outcome


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## Mountaingem

I've had good sucess with Sea Bands, which are an anti motion sickness product you can buy at the drugstore for like $10. They are these sweatband looking things with an acupuncture ball inside that when worn on the wrists interrupts the nausea signal from your brain. 

These are awesome for medication induced nausea. They're a bit tight but they helped me sooo much. Also Peppermint Altoids are helpful, too, and peppermint herb tea.

The doc could prescribe Zofran which is a very strong anti-nausea drug, too-but it is constipating, and with a bowel obstruction you don't want that!

Hope you get to feeling better soon!


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## David

Cavatina said:


> Thanks David, I'll try that. I'll let you know the outcome


Hopefully it works.  But that you had an obstruction recently is of course concerning and I'm worried it is related to your narrowing.  Do you know specifically where the obstruction was and did they evaluate how narrowed your bowel is?


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## Cavatina

Thanks a lot for that Mountaingem. I'll try the Sea Bands. You're right, no I don't need anything to constipate me!  After your info., I'm hopeful. I'm afraid I hate peppermint tea but find that lemon and ginger tea helps a bit. I've not heard of Altoids. Are they medication or sweets? Anyway, good of you to try to help.


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## Cavatina

Hi David. No, they didn't say where the obstruction was and neither did they say by how much it is narrowed. I didn't know they could tell me that, or even the relevance. I only know that they very much steer clear of operating as next time they do, they said I would be fed by tube permanently - hope that doesn't happen but I'm prepared if it does. I'm seeing my Consultant on 11th June so I'll ask to see the Xray and see if she can answer your questions. Thanks again


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## Dazzafarr

Hey, I get joint pain as well.
It calmed down a lot after taking anti-inflammatorys.
I also changed my diet as well, I was only eating veg,fruit,white meat and GF bread.
Now.. I'm on the gluten challenge and I must say.... I feel like s%*t.
But it's only way to find a diagnosis....
3 elements help with joint pain I found-
Vitamin D + calcium suppliments + antiinflamitorys...


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## Cavatina

Hi. Sorry to hear you're still having painful joints. It's all over my body so not a lot of hope for me! I'm in the early stages of steroid treatment and the pain seems a bit less so hopefully they'll sort me out. My main problem right now is the nausea so I'm trying all I can to beat that too. I can't take calcium or Ibuprofen as they irritate my stomach. Thanks a lot for the suggestions though.
Hope you continue to improve with your diet.


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## Mountaingem

Altoids are a candy-usually where you find breath mints or gum.


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## Cavatina

Quick update to the above. Thanks to everyone for help and advice. At the moment, I've stopped taking Lanzoprozole as the GP wants to do a test to see if I have an infection and can't do it until I've stopped those for two weeks. Also, on David's advice, and on the advice of the rheumatologist, who didn't think they did much, I've stopped Glucosamine and Cod Liver Oil tablets. I'm using Sea Bands - constantly, even at night, and I'm having four teaspoons of Gaviscon three times a day. I'm down to two steroids a day now. The last two days have been - and I can't believe it - nausea free! Also, the pain has improved a lot, so hopefully, I'm getting there. I think it will be a long process but so far so good. After spending soooo long feeling abbsolutely awful and not wanting, or not being able, to do much at all, today I weeded the front garden!!!  I feel so much happier. Thanks thanks and thanks again!!!


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## David

Something else for all of you with arthritis who are on either immune suppressors or biologics to discuss with your doctors if you feel it is pertinent:

Blastomycosis
Histoplasmosis
Coccidioidomycosis

These are fungal infections that can lead to joint and muscle pain and love people who have a reduced immune response or are on TNFa blockers.


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## Cavatina

That's very interesting David - maybe that's me. I'll let you know when I've had the test.I'll certainly put those suggestions to my GP. Thanks again.


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## David

No problem.  And in response to your post above mine, I'm so happy to hear you're doing a bit better!


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## #2asap

I discovered DMSO a year ago when my joint pain was out of control . It works and is a miracle. It does take 2 days for it to work. I advise you to read all you can about it. Love #2


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## Cavatina

Hi #2 - I've never heard of DMSO and will ask my doctor about it. Thanks. To update on what's happened recently. I've seen the rheumatologist who has put me on Methotrexate, starting tomorrow. It sounds, from the info., like a horrible drug with awful side effects but let's not be negative, if it helps with the pain, which is much worse, I'll try anything. The gastroenterologist has said it would be ok to take it as its often prescribed for Crohn's anyway. I didn't find out about the position of the obstruction or the narrowing. I did try to find out but she talks so fast that it was overlooked with everything else she was saying. It appears, although they failed to tell me, that I now have gallstones and she wants me to have an ultrasound to find out how many, and then to have my gall bladder removed. Thinks this may have been the cause of the blockage and the nausea. The saga continues!! :ysmile:


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## #2asap

Cavatina, Your Doc most likely will not know of DMSO. If you do an internet search for DMSO it will come right up. I was skeptical, but I gave it several days and it worked.


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## David

Cavatina,

We have a wiki entry on DMSO and at the bottom of it you will find threads on the forum where it has been discussed.  Some of it is quite interesting.


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## skippy111

The thing with the DMSO that bothers me is that it treats the pain but doesn't treat the underlying cause..  like throwing water on the fire...

Pain is the body's way of telling you something is wrong. If you are treating the pain without addressing the root cause of the pain, all you are doing is allowing whatever the problem is to get worse and worse even tho you may be pain free ..

The big question I think is What is causing MY joint pain? the source of mine could be different from someone else's ...

What works for one person may not always work for another so where it comes to drug interactions, do not rely on verbal advice however well meaning it may be unless it is from a pharmacist, or a liscensed health care practitioner.. 

This post is a bit long because I have a theory on joint pain.. in order to treat it we need to  identify the source.

I think the one thing we can agree on is that it is a muscular skeletal pain..

Usually for me, when my right knee starts aching I know that means my chron's is flareing and time to call my GI.. Usually he would put me on Prednisone because we pretty much know that there is inflamation somewhere. He would schedule a Colonoscopy to find out what is going on.

That was how it was back in the early 90's when I was first diagnosed with chrons.

with this latest eppisode, I was started with 60 mg of prednizone right in the er based on my history, and the fact that it had been nearly 15 years since my last colonoscopy. 

So from this, we can speculate that the root cause of my joint pain would be the lack of nutrients neccecary for strong bones due to malabsorption caused by inflamation ...

Between the pain meds, the Prednizone, the Cypro/Flagyl combo etc... I was in no pain.  The prednizone was preventing inflamation and the cypro and flagyl were attacking the bacteria...  then the zofran was preventing Nausea.

the pain meds are great, but they are meant to provide relief from pain.. the pain meds do not treat the underlying cause...  Dont get me wrong, when it was time, the nurse brought my meds in and I took em... I was not about to lay there and suffer needlessly..

Now that I am down to 50 mg of prednizone, My legs get stiff if I am on my feet too long and my knees ache. My Colon is disconected from my intestines to give them a chance to heal with the prednizone...

for my joints to be hurting at 50 mg of prednizone that would tell me that my inflamation was really bad...

In addition to watching to make sure I am getting the right nutrients and taking my prednizone, I take my  pain meds for relief of the pain..

As far as my colon goes, the surgeon thinks it may need to come out but we won't know untill they are able to do the colonoscopy. The hope is that between now and Aug/Sept, the prednizone will have cleared the inflamation in my intestines and by some miracle if the colon is ok then I wont need to have it taken out... I am keeping the bag tho, simply because I feel that a reconnection would only put me back to where I was before my flare up... and i will need to have a colonoscopy every year or so..

Prednizone is one of those medications that while they do what they are supposed to do, you don't want to be on it for too long because it can cause problems.

The pain meds are great, but prolonged use of them is not safe for me because of the Psych meds I take, 

my own experience would lead me to speculate that joint pain occurs when there is a deficency of the vitamins and minerals needed for strong healthy joints.. in other words, something is preventing proper absorption of those nutrients... Inflamation is one of many causes possible, sometimes medications will react with each other and cause problems... also, even taking vitamins together that should not be taken together can cause a reaction..

It is important that you use only one pharmacy if possible and in addition to your prescriptions, let the pharmacist know about any over the counter products you take.

most pharmacies now have a system where when you turn in your perscriptions, if there is a danger of an interaction an alert will come up.



> There are things we can do to reduce the risk of interactions. Awareness is one of the most effective measures we as patients can do. So being aware that drug interactions do exist and that Nutrients, Vitamins, along with food and vitamins must be included in the equation.
> 
> Second, always read the product labels carefully on both your prescription drugs and any over the counter products you buy. Learn about any warnings that may apply. The warnings are available in the drug packaging and also on the internet.
> 
> 
> there are programs online where you can enter in your medications and vitamins to check for any possible interactions..


Prescription for nutritional healing by Phyllys A, Balch, CNC

the link provided in the book did not work but if you type Drug interactions database you will get many sites,

this one works 
http://www.drugs.com/drug_interactions.html

no need to register, just click the I agree button on the page to test it out.

just to test it out,  I just checked remicade and 286 possible interactions popped up!

the classifications of interactions are either Major,Moderate or minor

right away two major interactions pop up even before you click the show all medications link..

Prednisone is one of them, and Methotrexate...

Flagyl came up under Moderate,

if you scroll down the list of major interactions, some of the common over teh counter meds show up too,


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## skippy111

David said:


> Cavatina,
> 
> We have a wiki entry on DMSO and at the bottom of it you will find threads on the forum where it has been discussed.  Some of it is quite interesting.


When I type in DMSO in the interaction checker, DMSC casanthranol/docusate comes up,  and that interacts with my celexa, not sure if the DMSO is marketed under another name or not but I DID find the DMSO article very interesting;


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## skippy111

Yesterday I was talking to one of my neighbors and he told me that he was trying that Joint Juice stuff, that Joe Montana is advertising..

He told me that it seems to work pretty good...  he gets the 4 packs in the supermarket for like $6,  I am going to give it a try and report back...

this is the link to what Im talking about in case anyone else has tried it.

http://jointjuice.com/


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## 723crossroads

skippy111 said:


> The thing with the DMSO that bothers me is that it treats the pain but doesn't treat the underlying cause..  like throwing water on the fire...
> 
> Pain is the body's way of telling you something is wrong. If you are treating the pain without addressing the root cause of the pain, all you are doing is allowing whatever the problem is to get worse and worse even tho you may be pain free ..
> 
> The big question I think is What is causing MY joint pain? the source of mine could be different from someone else's ...
> 
> What works for one person may not always work for another so where it comes to drug interactions, do not rely on verbal advice however well meaning it may be unless it is from a pharmacist, or a liscensed health care practitioner..
> 
> This post is a bit long because I have a theory on joint pain.. in order to treat it we need to  identify the source.
> 
> I think the one thing we can agree on is that it is a muscular skeletal pain..
> 
> Usually for me, when my right knee starts aching I know that means my Crohn's is flareing and time to call my GI.. Usually he would put me on Prednisone because we pretty much know that there is inflamation somewhere. He would schedule a Colonoscopy to find out what is going on.
> 
> That was how it was back in the early 90's when I was first diagnosed with Crohn's.
> 
> with this latest eppisode, I was started with 60 mg of prednizone right in the er based on my history, and the fact that it had been nearly 15 years since my last colonoscopy.
> 
> So from this, we can speculate that the root cause of my joint pain would be the lack of nutrients neccecary for strong bones due to malabsorption caused by inflamation ...
> 
> Between the pain meds, the Prednizone, the Cypro/Flagyl combo etc... I was in no pain.  The prednizone was preventing inflamation and the cypro and flagyl were attacking the bacteria...  then the zofran was preventing Nausea.
> 
> the pain meds are great, but they are meant to provide relief from pain.. the pain meds do not treat the underlying cause...  Dont get me wrong, when it was time, the nurse brought my meds in and I took em... I was not about to lay there and suffer needlessly..
> 
> Now that I am down to 50 mg of prednizone, My legs get stiff if I am on my feet too long and my knees ache. My Colon is disconected from my intestines to give them a chance to heal with the prednizone...
> 
> for my joints to be hurting at 50 mg of prednizone that would tell me that my inflamation was really bad...
> 
> In addition to watching to make sure I am getting the right nutrients and taking my prednizone, I take my  pain meds for relief of the pain..
> 
> As far as my colon goes, the surgeon thinks it may need to come out but we won't know untill they are able to do the colonoscopy. The hope is that between now and Aug/Sept, the prednizone will have cleared the inflamation in my intestines and by some miracle if the colon is ok then I wont need to have it taken out... I am keeping the bag tho, simply because I feel that a reconnection would only put me back to where I was before my flare up... and i will need to have a colonoscopy every year or so..
> 
> Prednizone is one of those medications that while they do what they are supposed to do, you don't want to be on it for too long because it can cause problems.
> 
> The pain meds are great, but prolonged use of them is not safe for me because of the Psych meds I take,
> 
> my own experience would lead me to speculate that joint pain occurs when there is a deficency of the vitamins and minerals needed for strong healthy joints.. in other words, something is preventing proper absorption of those nutrients... Inflamation is one of many causes possible, sometimes medications will react with each other and cause problems... also, even taking vitamins together that should not be taken together can cause a reaction..
> 
> It is important that you use only one pharmacy if possible and in addition to your prescriptions, let the pharmacist know about any over the counter products you take.
> 
> most pharmacies now have a system where when you turn in your perscriptions, if there is a danger of an interaction an alert will come up.
> 
> 
> 
> Prescription for nutritional healing by Phyllys A, Balch, CNC
> 
> the link provided in the book did not work but if you type Drug interactions database you will get many sites,
> 
> this one works
> http://www.drugs.com/drug_interactions.html
> 
> no need to register, just click the I agree button on the page to test it out.
> 
> just to test it out,  I just checked remicade and 286 possible interactions popped up!
> 
> the classifications of interactions are either Major,Moderate or minor
> 
> right away two major interactions pop up even before you click the show all medications link..
> 
> Prednisone is one of them, and Methotrexate...
> 
> Flagyl came up under Moderate,
> 
> if you scroll down the list of major interactions, some of the common over teh counter meds show up too,


If your problem is arthritis, there isn't mcuh you can do about it anyway once the damage is done. May as well use whatever works to treat the pain.


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## Spooky1

My doc looked at my joints and said 'there is nothing we can do for arthritis'  he offered stronger painkillers.  the joints are still excruciating.


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## 723crossroads

Sorry spooky1, I know how you feel. I can get away with going till about 5pm on tylenol some days, then I can't take it anymore and have to resort to my oxycodone. Otherwise ,I sit and don't do anything the rest of the day,.pain is too much!I am afraid of what it will be like in ten yrs!!!:yfaint:


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## Spooky1

yes, I do despair at what is to come.  its almost best not to think about what is to come really.  just cope with the day we are in


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## 723crossroads

Maybe we can still be on this forum and say,"Remember when?"


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## mtbr

Try eliminating sugars / Doing so saved my joints

I'm in my 30's and I've had moderate / sever ocerative colitis for 9 years and about 2 or 3 years after my first symptoms I started experiencing severe joint pain that would migrate from joint to joint (knees, knuckles, shoulders, toes, ankles, inner hip/groin, as well as in my back and chest muscles. The pain would last severely in one joint/area for a 1-4 days often being debilitating (sleepless nights, extreme pain, inability to use joint) then would travel to another joint usually then travel to the other or go dormant for a time then flair up again. 

After almost giving up on trying to fix the problem I saw a pattern (a few days after gorging on Halloween candy) that the flairs were directly associated with my consumption of processed sugars.  It was amazing after cutting candy, soda, and high fructose corn syrup and other processed sugars out of my diet for about a month the joint pain stopped completely. 

I found can eat natural sugars no problem such as in fruit and juice and have no problem. Once again the pain literally stopped after about a month and hasn't returned for now years. 

However, if I stray and start to each too much processed sugars I can feel it creeping in once in full force for a time after straying from my strict no sugar rule). Those little reminders and one large reminder have allowed me to stay "bad" sugar free and pain free. Before when I had the pain I used high and low doses of prednizone but even prednizone didn't completely help me. It wasn't until I stopped the sugar and stayed off it that I found relief. Also, I've been able to stay predizone free as well). Although my colitis is still an issue (mostly managed by Asocal / Asathiaprine) the joint pain is past. 

I hope this helps and I highly recommend you try this as it saved me so much pain. On a related note I also try to stay away from too much fake sugars (diet drinks, etc) as I have found that these have caused me some trouble although not nearly as much as processed sugars. 

Good luck!!!


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## mnsun

After a couple years of taking many supplements, specifically to remedy my worsening SI joint, I've finally narrowed it down to a few factors: 5,000 iu D3 daily, 1-2 grams Black Cumin Seed, and 8 hours of sleep daily.  The Black Cumin seed oil was the missing link for me which I discovered a few months ago.

I'm not sure how to classify the type of reoccuring sacroiliac joint pain I get, but I have found something that works for me if I take it daily, in the morning, on an empty stomach (I have had digestive issues when taken with foods and when taken within 3 hours of LDN).  If you do research on Black Cumin Seed oil and IBD, or BCS oil's scientific botanical name which isn't actually related to cumin spice at all, you will find that this stuff works locally on the gut's opiate/endorphin system--kinda sorta related to LDN's rebound effect.  However, this means you do not want to mix LDN and BCS oil or you will feel nausea.  However, while taking BCS oil, I now can have coffee like its water and I no longer am dependent on quality probiotics for solid BMs--this is a significant indicator for me since I've depended on them for 7+ years.

It is a 500 mg black cumin seed extract, called Thymocid, which I take in a supplement by Life Extension called Black Cumin Seed Oil. I previously tried their product with curcumin mixed in, but the single supplement works just as well.  I haven't tried any other brands, but this can be found reasonably priced, around $15 per month if taking 2 a day, online at some mega-warehouse websites.

I did not test positive for HLA-B27 and my SI joint pain occurs independent of any digestive flairs, but is directly related to not enough sleep and D3. I only get joint pain in the sacroiliac joint, nowhere else. My useless doctor suggested I start taking Pentasa (or maybe Asascol) daily for this axial joint pain--in my opinion, Pentasa is an expensive placebo, which may have limited efficacy for those with colitis symptoms and maybe peripheral joint pain, foisted onto crohn's patients with generally mild cases.

If I take 2 capsules of Life Extension Black Cumin Seed Oil daily, I don't get my si joint pain.  I've been upping my dose occasionally (to 1.5 or 2 grams) if I go days without reaching my 8 hour per night sleep goal and start feeling joint issues arise--I am a hopeless procrastinator when it comes to getting to sleep at a decent time.

Do a scholar.google.com search for "The Joint-Gut Axis in Inflammatory Bowel Diseases" and maybe do another for Black Cumin Seed and inflammation or ibd to see why this might work. I still haven't parsed through that first article... 

Please let me/others know if you try this.  It might take a couple weeks for the oil to work, maybe not.  I didn't take it daily until I gradually noticed the days I didn't take it, due to aforementioned effects.  This is actually very worth trying in my personal experience.

Nigella sativa (Black Cumin) Seed Extract Alleviates Symptoms of Allergic Diarrhea in Mice, Involving Opioid Receptors Swantje C. Duncker, David Philippe, Christine Martin-Paschoud, Mireille Moser, Annick Mercenier, Sophie NuttenResearch Article | published 29 Jun 2012 | PLOS ONE 10.1371/journal.pone.0039841
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0039841


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## David

Here are the nutrients found in cumin seed.  Your extract probably has substantially more than is listed here: http://www.whfoods.com/genpage.php?tname=foodspice&dbid=91


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## Spooky1

Does this help with any other joint issues?  My ankles, knees, hips, elbows wrists, and hands are painful.  My feet are a disaster.  I am having to suffer agonies when on them.  I simply cannot bear any shoes or socks at the moment.  the pain is too much.  
I haven't heard of this before but I'm willing to try as now the arthritis pain in my neck is just starting up and causing me major issues both day and night.  8 Hours sleep seems a huge amount.  I'm afraid I'm off to the loo plenty at night too.
Can black cumin seed be bought off ebay or amazon?  I really am pro giving these more natural remedies a go.  I seem to have failed entirely on big pharma stuff.


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## my little penguin

If you are having joint pain - you should try to see a rheumatologist since joints and muscles are their thing . Joint pain can happen during a Gi flare or independant of Gi activity.
SpA is common in those that have Ibd. It can involve the lower large joints as well as the SI.
SpA can progress to AS so it is very important to stay on top of joint pain with a Rheumotologist who can work with the Gi to reduce the joint aspect of things.

Article on SpA and AS



DS uses parafin wax baths for his joints as well as meds it makes a world of difference.


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## my little penguin

http://www.spondylitis.org/about/as.aspx

For anklyosing spondylitis 

For 

http://www.spondylitis.org/about/


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## mnsun

David said:


> Here are the nutrients found in cumin seed.  Your extract probably has substantially more than is listed here: http://www.whfoods.com/genpage.php?tname=foodspice&dbid=91


Actually, that article David posted relates to cumin seed (Cuminum cyminum), as in the spice which is NOT related to the Black Cumin Seed (Nigella Sativa) I'm referring to.  As always, do research whether this may or may not interact with other drugs/supplements you are taking, LDN particularly.

http://www.sciencedirect.com/science/article/pii/S1567576905001578
"Immunomodulatory and therapeutic properties of the Nigella sativa L. seed"
International Immunopharmacology
Volume 5, Issues 13–14, December 2005, Pages 1749–1770

Thymoquinone seems to be the most studied component of Nigella Sativa for its effects on ulcers, liver damage, antimicrobial effects, immunomodulating, cardiovascular, pain blocking, and antioxidant effects...  If you type into scholar.google.com thymoquinone and any of the above medicinal effects, you will get many results.


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## shaunbern2001

sunflower said:


> Here is a very helpful article on IBD and arthropathies!
> http://www.medscape.com/viewarticle/750045


So I'm reading through the comments, see this from Sunflower & go to the medscape article. All very good. An interesting read and I'm thinking I've got some ammunition next time I see the Rheumatologist. 

I get to the second page of the article and my finger joints start hurting like mad! This is just not fair. C'mon Crohn's, you gotta give me a break somewhere, even if it's just reading an article!


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## shaunbern2001

mnsun said:


> After a couple years of taking many supplements, specifically to remedy my worsening SI joint, I've finally narrowed it down to a few factors: 5,000 iu D3 daily, 1-2 grams Black Cumin Seed, and 8 hours of sleep daily.  The Black Cumin seed oil was the missing link for me which I discovered a few months ago.
> 
> I'm not sure how to classify the type of reoccuring sacroiliac joint pain I get, but I have found something that works for me if I take it daily, in the morning, on an empty stomach (I have had digestive issues when taken with foods and when taken within 3 hours of LDN).  If you do research on Black Cumin Seed oil and IBD, or BCS oil's scientific botanical name which isn't actually related to cumin spice at all, you will find that this stuff works locally on the gut's opiate/endorphin system--kinda sorta related to LDN's rebound effect.  However, this means you do not want to mix LDN and BCS oil or you will feel nausea.  However, while taking BCS oil, I now can have coffee like its water and I no longer am dependent on quality probiotics for solid BMs--this is a significant indicator for me since I've depended on them for 7+ years.
> 
> It is a 500 mg black cumin seed extract, called Thymocid, which I take in a supplement by Life Extension called Black Cumin Seed Oil. I previously tried their product with curcumin mixed in, but the single supplement works just as well.  I haven't tried any other brands, but this can be found reasonably priced, around $15 per month if taking 2 a day, online at some mega-warehouse websites.
> 
> I did not test positive for HLA-B27 and my SI joint pain occurs independent of any digestive flairs, but is directly related to not enough sleep and D3. I only get joint pain in the sacroiliac joint, nowhere else. My useless doctor suggested I start taking Pentasa (or maybe Asascol) daily for this axial joint pain--in my opinion, Pentasa is an expensive placebo, which may have limited efficacy for those with colitis symptoms and maybe peripheral joint pain, foisted onto crohn's patients with generally mild cases.
> 
> If I take 2 capsules of Life Extension Black Cumin Seed Oil daily, I don't get my si joint pain.  I've been upping my dose occasionally (to 1.5 or 2 grams) if I go days without reaching my 8 hour per night sleep goal and start feeling joint issues arise--I am a hopeless procrastinator when it comes to getting to sleep at a decent time.
> 
> Do a scholar.google.com search for "The Joint-Gut Axis in Inflammatory Bowel Diseases" and maybe do another for Black Cumin Seed and inflammation or ibd to see why this might work. I still haven't parsed through that first article...
> 
> Please let me/others know if you try this.  It might take a couple weeks for the oil to work, maybe not.  I didn't take it daily until I gradually noticed the days I didn't take it, due to aforementioned effects.  This is actually very worth trying in my personal experience.
> 
> Nigella sativa (Black Cumin) Seed Extract Alleviates Symptoms of Allergic Diarrhea in Mice, Involving Opioid Receptors Swantje C. Duncker, David Philippe, Christine Martin-Paschoud, Mireille Moser, Annick Mercenier, Sophie NuttenResearch Article | published 29 Jun 2012 | PLOS ONE 10.1371/journal.pone.0039841
> http://www.plosone.org/article/info:doi/10.1371/journal.pone.0039841


Very interesting about the BCS. Definitely worth looking into. My main point is that I'm inclined to agree about the Pentasa. I've now had two Gastro Drs tell me it's 'of little or no value for patients with Crohn's'. From what they said it has (basically) no impact on the small intestine. They were both surprised to see I'd been prescribed it (by a Consultant) & had been on it for nearly 2 years. Coming off it has not affected my symptoms negatively in any way.


----------

