# Crohn's Related Arthritis



## beth

I'd like to ask people who have joint pains which you think are related to, or have started with or after your Crohn's, about your joints, and the pains you experience:

Have you been officially diagnosed with a form of arthritis, which? (or which do you suspect you have if not officially diagnosed?)

Which joints?

How do they feel? chronic non-specific ache, full of gravel/rust/chili pepper/glass/etc, electrical zap! pain shooting hither and zither, swollen, hot, acute nasty ache that makes you cry, hurts when you try to lift a le cruset pan of water, etc. No need for an essay just some key feelings.

Thanks muchly!


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## FEELING MUCH BETTER

Yes, arthritis can be one of the "offshoots" of Crohn's disease. I put that in parenthesis because it's not a symptom, but there is a word for it (maybe "side effect" would be better?) Everyone is probably different, but mine comes and goes with my flareups. I mainly get just achy in the hands a lot, but when it gets worse, it can go to several if not all my joints, sometimes in the left and right knees and elbow and wrist. It's hard to explain, but it travels around my body at random. Yesterday was weird because I woke up and it was really bad on the right side of my jaw. I had the hardest time trying to chew my food!


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## imisspopcorn

I saw a rheumatologist a few years back. I get the soreness in my wrists, knees and hip...As soon as the flare goes away I always feel better. I don't think its the type of auto-immune arthritis that affects so many people. Rheumatoid arthritis is very disabling and disfiguring. 

Does any one have any disfigurement of their joints as a result??


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## CrohnieCarolyn

I never had a problem with my joints til I went on Remicade and boy did I get a nightmare...One day my elbow would be swollen and red and hot to the touch - then two days later it would be gone - then my knee would blow up - then that would be gone - then my toes would blow up to the point where I couldn't walk - since being off the Remicade I have had NO arthritis...


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## GI Joe

I have RA in my hands, neck, hips and shoulders. Remicade helps some but about 5 weeks after infusion pain and stiffness returns with full force. Cold weather also makes things worse. Pain is hands is a constant heavy, dull pain. Shoulder pain is sharp pain when I exercise. Hip pain comes and goes but when it comes is a sharp pain that makes all activities--sitting, standing, walking, everything painful.

RA and Crohns are related. They both are autoimmune diseases where the immune system attacks the body as if its a foreign substance.


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## kskitt

my mum has arthritis in her left knee


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## boydman

I have had joint and muscle pain on a constant basis(probably because i install cabinets every day) but also surely a result of having crohns and not being able to get essential nutrients. I have tried a new health drink that contains 13 servings of fruits and vegetables in  one 3 ounce serving it has helped me temendously with my aches and pains as well as other ailments   have


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## GoJohnnyGo

boydman said:
			
		

> I have had joint and muscle pain on a constant basis(probably because i install cabinets every day) but also surely a result of having crohns and not being able to get essential nutrients. I have tried a new health drink that contains 13 servings of fruits and vegetables in  one 3 ounce serving it has helped me temendously with my aches and pains as well as other ailments   have


Is it okay to mix me up a cocktail of Ocean Spray and Welch's (readily available from my local grocer's shelves), or do I need the Brazilian wonderberry?

So, do you take 3 ounces for your arthritis and 4 ounces for your Crohn's, or am I confused? Please clarify.


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## cheeky

i was diagnosed with palindromic rheumatism, before they diagnosed me with crohn's. 

i don't know if i still technically have that... i think it was just the crohn's causing the joint inflammation. 

the joints that bothered me the most were both of my ankles... they'd take turns acting up.... but i've also had inflammation in my knees, elbows, wrists and fingers...  but overall the inflammation in my ankles were always the worst. 

the pain would bring me to tears at times... it was just very sore and my skin would get red and swollen and a little burning...  umm the pain is indescribable... i guess just kind of like a really bad cramping pain??  i don't know.  

it was also worse in the mornings... or after i'd been sitting a while and had to get up.   also, it would act up more in the summer time and winter... but worse in the summer.


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## boydman

go for the welches i dont care. its not the point all im trying to say is i dont eat fruits and my vegetables have to be cooked down to a point where there is hardly any nutritional value. whats wrong with thinking a supplement giving me what im lacking would make me feel better. i never said a brand name and many companies sell th same thing. all that i am saying is its helping me maybe its worth looking into


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## bella_sky

I have not been diagnosed with arthritis but the joint pain didnt start til after the remi and is continuing to get worse. I'm going to leave another message with doc on monday, not sure if i can continue this pain. My next infusion is in 2 weeks and am seriously reconsidering doing it.

Joint pain - ache in hips, sharp shooting pains in lower back, aching in shoulder bones (sometimes sharp), sharp pains in back of neck and sometimes all the other joints hurt but everything else just comes and goes. The hips and back are constant.


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## beth

So some people have it after starting Remicade - guess I better not have that then! And others smell of Salt Pork And Ham. But I'm obviously far from alone with this. 

I started the thread because I saw a Rheumatologist on Friday. Now, he said it wasn't rheumatoid arthritis as he could not find any evidence. How the flying bleep he thinks he might have found anything at all with the cursory examination and history he did I'm not sure. He seemed to reach a conclusion far too quickly for my liking. However, to be fair, when he moved my arms around/etc they did not exhibit the symptoms I generally see: like today it hurt to lift a mug of tea to my mouth. So I tried moving my arm in the same way as he did, and lo' it didn't hurt. Move my arm in the same manner as a mug, and it did. Go figure, as you say across that side of the pond.

He utterly dismissed my thinking it was an arthritis, with a had-wavy 'its soft tissue'. Which was really less than helpful.

There were two things that came out of the meeting: I have an MRI on thursday - should be exciting as I've never been in the clonky machine before. And he suggested I try some other painkiller, but we couldn't remember the name: began with met- something. Anyone recognise it? - google didn't come up with anything. 

Paracetamol and codeine doesn't touch the aches and pains, and whilst tramadol does help a bit. It bungs me up something rotten. Kinda ironic isn't it.


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## drew_wymore

I've got pain in my wrists, shoulders, hips, knees, ankles and feet Beth. I've seen Rheums and I'm negative for RA factor but x-rays showed some degenerative stuff going on as well as a genetic thing with some of my fingers .. Might be related to Crohns or the immune problem but not sure yet.


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## beth

It's a right ol game trying to get to the bottom of these things isn't it Drew! I dont know whether Crohn's Related Arthritis exists as a recognised separate problem, to the other auto-immune arthritis's. Looking at the RA wikipedia page I dont seem to tick many of the diagnostic criteria, but was interested in the paragraph that suggested treatment should be started early to avoid degeneration of joints rather than waiting until all the boxes had been ticked. 

Certainly, I dont want to be like my neighbour with RA who has to ask us or random people in the street to help open jars or put the bin out for the dustmen for her - I'm far too young for those kinds of issues! And I guess you are too.


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## Sparky

I have RA, diagnosed about 5 years before I started with CD.  It got markedly worse when the CD appeared.  Mine was diagnosed quite quickly as I presented with classic symptoms - high ESR/CRP, positive Rheum. factor plus obvious symmetrical pain and swelling in my hands, wrists and knees.  These days it affects far more of my body, and when I'm in a chrohns flare there are very few joints that don't cause me pain - I struggle to eat at times because my jaw is so painful I can't chew.  I can tell the difference between Chrohns pain and RA - hard to describe, one is 'deeper' than the other although there's no real difference in the intensity of the pain.

Imuran has definitely helped (shame about losing my hair and eyelashes but hey!), but on a cold day, I am that woman who has to ask random strangers to open jars 

I was lucky in that my doc was of the opinion that you treat as soon as symptoms show to try and minimise the amount of degeneration, and so far (after 11 years) Ihave very little in the way of visible damage.  My hands are usually obviously swollen, but not twisted in any way which is down to the early treatment I believe.  On Xray, the only joints that are severely damaged are my shoulders, right in particular.  That's a bit knackered tbh, and replacement has been suggested once or twice as an option for the future.

It's particular movements that are most painful for me beth - I can't move my right arm without thinking about it, because I have a very limited pain free range of movement - your comment about lifting the mug of tea struck a chord.

Treatment - used to love my voltarol but obv. it's a no-no now.  Codeine and paracetamol is about all I can take, but it only takes the edge off the joint pain.  Hate tramadol, it made me feel most odd.  I have steroid injections which are fab - bloody big needle but they work a treat and I usually get about 6-8 weeks of no pain in whichever joint I've had injected (usually shoulders/hips). I'm currently waiting to see my consultant for a follow up and ongoing discussion re: infliximab, and plan to raise the whole pain control thing with him.  I cope reasonably well with the gut symptoms on a day to day basis, but I find the constant pain very wearing and it makes me grumpy/narky.


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## beth

Hi Sparky. I know what you mean about tramadol. I'm thinking of asking my doc for plain codeine instead. At least it doesn't bung me up so I need to take laxatives. And the grumpy thing, yup, I just can't think straight through it either. So even tho I know I'm being a grump I can't get out of it.

I've been for a short buzz round the block on my bike this morning and now I know what the chili pepper joints are like. My left wrist has a burning sensation. Didn't really think of it like that before.


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## cvickers

I have had Crohn's for about 45 years.  The painful joints, primarily my hips, started almost 30 years ago but no one knew of the relationship to Crohn's and I was not treated until the arthritis had destroyed my hips, knees and lower back.  Those of you who are having joint pain need to seek treatment so that you don't end up with joint replacements, which I'm dealing with now.  Your gastroenterologist is not the one to treat it.  You need to see a Rheumatologist ASAP.


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## Gerrilauren

So I have had crohns for 15 + years and eventually needed an ileostomy. After 5 years with the ileostomy I am getting the joint pain again. It's been a long time since I experienced it. It's in my wrist and my hip. I am in pain and don't know what to do. To top it all off I had thyroid cancer a few years ago and moved to a new city 2 weeks ago so I have no dr's and I hate to complain to my husband, between the crohns and cancer I am always sick and in pain. I don't want to take more medicines any over the counter pain meds work?


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## marti

I have Osteoarthritis and Crohn's disease


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## deb123

I have never experienced joint pain until recently.  Hips, knees, tops of my feet, inside of elbows.  The pain comes in waves, and random joints affected, but usually constant in hips.
I saw Rhematologist recently, who ruled out arthritis with an examination of lifting arms this way and that, but i laughed when i read Beths account of the mug of tea, the same arm the next day hurt like hell at the elbow when i lifted cup, or tryed to brush hair!

Whatever the pains are they are really good at hiding, as blood tests show nothing.  And i'm definitely not making them up.  Maybe its referred pain??
Well whatever it is i wish it would stay in my gut so i know whats going on at least.


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## KayleighMeek

I have enteropathic arthritis which is an extra intestinal manifestation of crohns. It usually occurs in the large joints so hips, knees, shoulders and ankles. The joints are usualy warm to touch and very swollen. At the moment my arthritis has flared up again in my knee at times I can't walk at all when flares get very bad as I can't bare any weight at all. The treatment I have for this is usually the same as for my crohns, so I find when my crohns is under control my joints are usually pretty good. 
Hope this helps and you find some relief for your joint pain x


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## jxarias1

I was diagnosed with arthritis of Crohn's disease in January of this year. I have been on Remicade. I started off with every 8 week treatments, then every 6 weeks, 4 weeks, and now I am down to every 3 weeks. :ymad:

My knuckles, wrists, and feet swell and are hot to the touch..sometimes on both sides and my knees ache immensely. I cannot drink any antinflammatory medication due to my Crohn's disease so I am left with waiting around for my Remicade infusion shot. :sign0085:

The pain I would get from my flare ups does not compare to the arthritic pain I get...at least I was able to manage my flare ups better. I am also taking calcium and Vitamin D3 5000 mg supplements. My blood work showed I was deficient. 

I also discovered that humidity really swells my joints terribly to the point I cannot walk or even have trouble opening things with my hands.

Anybody know if instaflex supplements with tumeric root really help with joint pain? Best wishes for those of us going through this ordeal. Not many people understand what we go through.


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## mf15

If I somehow strain a muscle,many times my immune sys will attack, it might be sore for weeks,with intense pain. Short dose of pred will fix it.
Have UC.
Old Mike


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## Paul Cronk

I have a number of issues with my back, all of which were manageable before Crohn's, all of which are much worse while Crohn's is active.

There is a compacted disc pressing on the nerve in my neck. I also have sacro-iliac pain. these are real, existing problems, but in a flare of Crohn's, somebody twists a screwdriver into these areas.

All this is supposed to respond to the Humira I am now taking. There seems to be some improvement all round but the jury is still out.

There is no proof, but the rheumatologist is convinced everything is related. It goes something like this: the Crohn's sets off an generalised inflammatory response which, apart from specifically screwing your guts, will also seek out vulnerable spots elsewhere. Arthritis is another auto-immune disease and a few people who are diagnosed with Crohn's actually have more extra-intestinal symptoms than gut problems.

For me, one is as bad as the other, but let us hope that Humira will help both. Fingers crossed.


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## angiemitch

I am also experiencing intense joint pain.  Mostly in the areas of my neck, shoulders, hips, knees and sometimes ankles.  It also seems to be aggravating my carpal tunnel (which I've had on/off for many years).  At night my arms and hands burn like fire and it hurts like crazy.  The other joints (especially the ankles and hips) mostly hurt when I get up from a chair, out of the car, or to a standing position when I'm down on the floor or squatting/kneeling.  Once I'm in one spot, they don't hurt, it's when I move that they hurt.  Even getting out of bed after resting, I hurt like crazy when I first stand up and start to walk.  Once I'm moving, it's okay again.  I even notice that when I go to grab my purse and get out of the car, I barely have the strength in my shoulder/arm to pull it out with me.  

The strange part for me is that I am not currently in a flare at all.  I had a small bowel resection in June, and have been feeling better than ever with regard to my gut/bowels.  This problem with my joints started about a month or so ago (several weeks after surgery).  And other than an iron supplement and various vitamins, I am on zero meds.  The only meds I've really ever taken for Crohn's is Pred, and I've been completely off that since May.  Seems weird that this is happening now, when I'm otherwise feeling great, and I have NEVER experienced it before in my life.  Annoying!


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## sash

I have the same systems. When I sit for a little while and get up, I can hardly walk. It takes a few steps to get going. Everyone keeps asking what is wrong. I had internal bleeding back in April because of Meloxicam that a foot doctor gave me for arthritis in my feet. My crohns dose not seem to be acting up, but my joints in my legs, feet and ankles just seem to be getting worse. Also, I am getting to where I can't open the simplest of things. It is really hard at 48 to ask people to open stuff for you when you have always been a strong person. Most of my joint pain is in the lower part of my body.


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## jxarias1

Hi, Sash! As I had posted previously, I have been on Cimzia for 9 months now. I have never felt better. I have had no joint pain since the first time I switched to Cimzia. I have not had any flare ups with my intestines in about four to five years now. 

I recently got my eyes checked, because Crohn's disease can eventually damage your eye sight as well. Doctor said my vision was perfect. He did say that Cimzia may be causing some slight side effects (blurred vision), but not a big concern. 

I also got my blood results last week and all is great...no more low levels of Vitamin D. It really helps that I've been drinking this veggie shake: cucumbers, ginger roots, celery, lemon juice, spinach, rasberries or strawberries, apples. Feel pretty energized. 

Oh, and recently I saw in a Dr. Oz show that eating red cherries is a good source of anti-inflammatory remedies. It also boosts your energy too.

You should look into Cimzia. Hopefully it will work for you. 

P.S.
I was diagnosed with arthritis of Crohn's disease about a year and a half ago at 40 years old. So age does not matter...our disease is not prejudice.


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## Crohnergirl

I have been seeing a rheumatologist for about 18 months.  She has always suspected I had 'Crohn's related' arthritis.  I was diagnosed with Crohn's in 1985 however I had never heard of an arthritis relation before this.  I have eight siblings.... all of which have one form of arthritis or another.  A few have IBS,but nothing more serious.  Two weeks ago, I was set up for a complete new set of X-rays as my rheumatologist now suspects I may have Seronegative Arthritis.  Regardless, my pain comes and goes and doesn't target any one area.  I do often have sore hands and elbows, but I would have to say my hips are the worst.  One more than the other.

Surgeries:
-small bowel resection / January 2003
-right hemicolectomy / September 2004
remission ever since


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## hbrekkaas

If I'm in aflare I get terrible pain in my right knee and hip, and left elbow and shoulder. But now that things are "under control", those pains are gone. In their place are terribly stiff fingers and sometimes toes. The doc just said its a "extraintestinal manifestation" and that I get to live with it. I'm 2.5 months post surgery, their hope is that my body is still just adjusting to things.


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## jrtdogmom1

I have arthritis in my fingers, hands, wrists and knees.  My finger joints are swollen and painful and the fingers have rotated so that they are no longer straight. It is worse in the winter,  and it does seems to flare and subside. I have had arthritis long before a Crohns diagnosis,  but have probably suffered from Crohn's for much of my life with incorrect diagnosis of Irritable Bowl and Celiac disease.

I have used a lot of ibuprofen for the arthritis and for degenerative disc disease and this has probably contributed to the stomach ulcers and bleeding ulcers.


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## Vonnie

I have crohns and have been on humira for over 3 months.  I have always had some type of joint pain through the years and before being diagnosed last year, I had terrible problems with swollen achilles tendons.  I just woke up one day and one foot was huge and it hurt like crazy.  Prednisone fixed that.  Then a few months later, the other foot.  Same thing.  A few months later, my knee.  Same thing; prednisone made it better.  Have had a bowel resection since those times and I still hurt in my knees, lower back, hands, feet, ankles.  GI doc wants me to go to a rheumatologist and I have put off doing that. I hate having to take more medicine but if I sit for longer than a few minutes at a time, I am so stiff that it is hard to get up and move.  Some days are better than others.


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## Kaevata

I am hobbling into clinic later this afternoon and I want talk to the Dr about back pain and hip pain that I am getting. 
I suspect sacroiliitis which is a feature of Crohn's along with many other conditions. Shooting pains on waking and getting up are the worst but they get better as the day goes on. The hip just aches and moans all the time and I was told two years ago that I have osteopenia in that very hip. 
I will see what he has to say.


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## nogutsnoglory

Is anyone else having full body pains from crohns arthritis. Mine is not limited to select joints, its all of them. I am told this will dissipate once my inflammation goes down.


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## bozzylozzy

I have not been diagnosed with IBD (long story)
But I have been diagnosed with seronegative inflammatory arthritis. Mainly affects my knees, feet and hips

I dont have big red, swollen joints.. they look completely normal.. except my physio says he could feel swelling. Also.. when it is bad, even just a stroke of fabric across my knees, hurts so much!

I am on sulfasalazine for this and it works a treat (also had a steroid injection into my left knee which was fab!)
This all began when I had my first ever flare 2yrs ago.. I would have to walk sideways down the stairs like a crab and would be in tears due to the pain just sitting as a passenger in the car


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## ce1210

I am pretty sure I have some kind of arthritis, my GP tested me for RF last week and it came back negative, but my father has been diagnosed with RF and tested negative 3 times over 10 years then got a new doc and was retested and it showed positive. She described my symptoms as asymmetric polyarthritis because all my painful joints seem to be on the left side(neck, back, shoulder, hip, knee) but both my elbows and hands get stiff and pop a lot. I was having all of these issues before being diagnosed with crohn's but docs pretty much just told me to take NSAIDs and to try stretching/heat and ice none of which ever worked. In the past doctors always treated me like I was a junky trying to score any time I complained about pain, but since being diagnosed with crohn's, all of a sudden docs seem very interested in whats causing my constant nagging pains. 
The worst of my pains are in my left neck/shoulder and in my left hip/groin area...the hip and groin area are a constant ache that makes it way up to my rib cage and my shoulder is a constant stabbing/burning pain that seems to feel better if I poke around my scapula pushing pretty hard on whats underneath there and my neck feels like a pinch when I turn my head to the left and a pull when I turn it to the right.


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## Jhsmith1167

I have had crohns for at least 10 years. I have had 3 bowel resections, plus battles with fistulas. I have been on Remicade for years and I am currently taking Methotrexate also.I have recently in the last six months been experiencing joint pain. But, as of late I have severe swelling of my hands, wrists, and feet. I have pain in my knees particularly when I get up in the morning. It moves around from finger to finger, and wrist to wrist. Currently I have swelling in my fingers in my left hand. My right wrist is so swollen I cannot wear a watch, both my feet are swollen on the bottom.My GI is sending me to an arthritis DR. but I'm not sure if it is arthritis. Any suggestion?


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## Sparkle2012

beth said:


> So some people have it after starting Remicade - guess I better not have that then! And others smell of Salt Pork And Ham. But I'm obviously far from alone with this.
> 
> I started the thread because I saw a Rheumatologist on Friday. Now, he said it wasn't rheumatoid arthritis as he could not find any evidence.
> He utterly dismissed my thinking it was an arthritis, with a had-wavy 'its soft tissue'. Which was really less than helpful.


Although this is an old post, I saw my rheumy today and he saw no evidence of arthritis in my hand xray or in blood tests and offered me Tramadol for the pain, which is not that bad really.  He also said that glucosimine can be used but there is no proof after studies that it works.  Then as an afterthought, he was reminded that I have Crohns and said it's probably Crohns arthritis and it's not disfiguring.  And offered to stick some synovisc in my knees which I need to research.   I also felt it was a quick dismissal and someone said he didn't check 2 of the most common Crohns arthritis markers  sedimention rate and protein C-reactive.  Now what?  I guess I go back and ask why along with my 3 sticks of synovisc that are supposed to be kind of hurty.  Any luck on your side?


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## Jhsmith1167

I have seen a Rheumatologist and after ex-ray and blood work, not much info. Other than my ANA inhibitor reading in my blood work was extremely high. Which is my auto immunity. The Rheumatologist suggests I may be having a reaction to the Remicade. I have been on Remicade for years. My GI is on board with the arthritis Dr and they are trying to come up with a fix. Meanwhile my hands are swelling like balloons, I cannot wear my wedding ring or even a watch. The pain is indescribable. They gave me Norcal. When I go to bed at night is tough, my elbows & knees ache also. What suck is my crohns is finally in remission, and now I have to deal with this.


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## Sparkle2012

That's reallly discouraging to hear.  It's almost like the Immune System is determined to attack something, if not the gastro...on to the joints.  I'm really sorry to hear...  I hope they can get it under control soon.  Could be time to move on from Remicade.  Seems like these drugs don't work forever and you have to play musical drugs from the feedback on this forum.


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## lizbeth

I've had joint pains for 15 years, starting when I was 30. First it was my right hip and SI joint and I was dxd with sacroiilitis. Since then I've gone on to have pain in my hands, shoulders (had surgery for impingement syndrome and being investigated for other shoulder now), neck, hips, SI joints and knees.  I've been dxd with polyarthralgia and a rheumy said it's not related to my Crohns which was dxd 15 months ago, though I know when my tum is bad my joints get worse.  It's hard getting out of bed cos my spine is so sore. When I sit for even for a short time it's incredibly painful to stand and stairs are a nightmare, you can imagine getting to an upstairs loo in a hurry is tricky lol.Recently I've had a new pain in my knees were if I change direction of where I'm walking I will get an excruciating pain along with a loud crunch and am not able to put any weight on that leg for a few minutes......I've no idea what's going on with my body but I don't think it looks me very much lol.


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## Sparkle2012

Lizbeth....my doctor has been talking to me about Synvisc injections.  Sounds like your knee cartilage is shot.  I'm looking into it before I agree to injections but it will buy you 6 months of knee cartilage.  Have you heard of it?  I've been diagnosed with "non rheumatoid arthritis" however; he thinks it might be Crohns arthritis or Osteo.  I have been diagnosed with osteo arthritis in my knee by an orthopedic doctor.  My hands ache all the time and other than an old injury in knee and ankle, the hands are the worst.  I will probably opt for the Synvisc injections if my insurance will pay.


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## lizbeth

Sparkle2012 said:


> Lizbeth....my doctor has been talking to me about Synvisc injections.  Sounds like your knee cartilage is shot.  I'm looking into it before I agree to injections but it will buy you 6 months of knee cartilage.  Have you heard of it?  I've been diagnosed with "non rheumatoid arthritis" however; he thinks it might be Crohns arthritis or Osteo.  I have been diagnosed with osteo arthritis in my knee by an orthopedic doctor.  My hands ache all the time and other than an old injury in knee and ankle, the hands are the worst.  I will probably opt for the Synvisc injections if my insurance will pay.


I hadn't heard of these but would consider them myself with some more research, very interesting. My gp has suggested it's a cartilage problem and I will have it checked out shortly, well end of next month which is shortly with the nhs ).


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## Sparkle2012

Doesn't seem to be much in the way of side effects unless you are allergic to chickens and chicken products.  The cartilage is taken from the "cone" of the chicken....as it is very similar to our existing cartilate.  Other than that, it will give you 6 months of cartilage and then will go back to normal until you have another injection.  I'm still researching but I can find no bad rap on this product.


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## lizbeth

I would definitely have a look into the treatment, though not sure if it's available here? Have you heard of your insurance will pay yet?


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## Sparkle2012

lizbeth said:


> I would definitely have a look into the treatment, though not sure if it's available here? Have you heard of your insurance will pay yet?


The VP of nursing in a hospital here has been have those injections in her knees for 6 years.  That's good enough on my investigation because these hospital folks have the latest data on these things.  My insurance has agreed to pay but I have military insurance...Tricare.  Im not sure if other insurance companies are paying.  You should inquire if your insurance covers.  I would be interested in knowing to share with anyone else on the forum from the UK who  might benefit.


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## lizbeth

I rely on the good old NHS so don't need insurance like you would although quite often I wish I did have insurance. However as I haven't been seen by anyone other than my gp I don't know what will happen or even if it's available here but I will keep you posted.


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## strawberrys78

I don't know if it's arthritis, but I always assumed it's from Crohn's. I'm only 20 and my knees and upper back where it bends always hurts. My knees and back always feels super stiff, if I sit down for a couple of minutes I feel like I need to move around, and my joints also crack a lot. I can't ever get comfortable with my back! It sucks.


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## Sparkle2012

That sounds like arthritis....best to keep moving and get you some yoga CDs --- that stretching is underrated.  Awesome stuff.  keeps you feeling good.


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## Tryagain

Hii came across this post when looking for help with joint problems after surgery. I noticed both anglemitch and hbrekkas both described having sore joints especially fingers and hands in the first few months after surgery, and this is what is happening with me too. I would really like to know how you both managed these problems and whether you have found relief from them. Many thanks. TRyagain .


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## chicky402

hi. I also get a lot of joint pain, especially in my hips. Its so scary how cd can do that. I read a while ago (on a different blogging site) that a lot of people got arthritis  after taking Humira.


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## Sparkle2012

I think the entacort after surgery...or perhaps the pentasa...brought it on.  I know they say that it's part of the Crohns deal.....but I think it's part of the medicine deal.  My Doctor told me that those on Humira loved it because "no more joint pain."  I am not on Humira and have only used pentasa which I've heard is known for arthritis issues.  I had hand xrays recently...results were "no signs of arthritis."  My hands ache every day.  Went to a rheum doc and he said "could be Crohns arthritis" and I can give you a script for Tramadol...that was the end of it.  I don't take it though.  It's aggravating, not that painful.  I wake up with "trigger finger" in the morning....my pinky and ring finger both hands.  Within a few minutes, it's resolved.  So I bought a wrist splint because I sleep in a fetal way with my hands.  I think that has helped the trigger finger today.  Knuckles continue to be achy and hold some water retention at the base.  Doctor hinted at carpal tunnel so this should help both.


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## Sparkle2012

FEELING MUCH BETTER said:


> Yes, arthritis can be one of the "offshoots" of Crohn's disease. I put that in parenthesis because it's not a symptom, but there is a word for it (maybe "side effect" would be better?) Everyone is probably different, but mine comes and goes with my flareups. I mainly get just achy in the hands a lot, but when it gets worse, it can go to several if not all my joints, sometimes in the left and right knees and elbow and wrist. It's hard to explain, but it travels around my body at random. Yesterday was weird because I woke up and it was really bad on the right side of my jaw. I had the hardest time trying to chew my food!


Make sure you aren't a "teeth grinder" - that could give you TMJ in that jaw and it's painful to chew.  I know what you mean about the prednisone.  I put on about 30 from Entacort and it's not coming off!!!!  It doesn't help that after surgery I can now eat without pain.


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## Essieluv

I was just recently diagnosed with Crohn's arthritis, and have started sulfasalazine. I guess I'm joining y'all.


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## Sparkle2012

Essieluv:  how are you doing on the sulfasalazine?  You do not have Rheumatoid Arthritis right?  Is your arthritis in your hands?  

Lizbeth:  I have had Synvisc knee injections in right knee and am on my 2nd left knee injection (2 of 3).  It has helped for comfort and swelling a great deal.  The shots aren't really painful - it's quick and you just have to avoid anything strenuous for 2 days.  No exercise until one week after they are all done.  (oh darn!   I will start a walking regime in 2 weeks to try to get off the steroid fat I gained a year ago after surgery.  It seems my appetite has also increased since eating without pain. haha  I was told losing 5 lbs is like losing 40 on the knees.  They are looking at the possibility of Synvisc injections into other areas of the body I read recently.


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## chicky402

Ugg this is so scary reading about everyone's experience with medications. I see my GI doc (for the first time since being diagnosed after surgery) on Tuesday and I am so nervous about the meds being offered. I am trying to do research but I think these blogs help a lot more.


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## dave13

chicky402 said:


> Ugg this is so scary reading about everyone's experience with medications. I see my GI doc (for the first time since being diagnosed after surgery) on Tuesday and I am so nervous about the meds being offered. I am trying to do research but I think these blogs help a lot more.


I recently saw my GI for the first time after surgery.He wants me on pentasa.I'm not pleased it may aggravate my arthritis.I'll trade no stricturing for aggravated arthritis.If it helps me,that is.Some days I get overwhelmed and confused so easily dealing with my new normal. :ybatty: Look forward to more on this thread.


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## lente

I started having joint pains when I was lowering the prednisone dose after being diagnosed. At first the GI thought that the pain was caused by the lowering of the prednisone, but after 2 weeks I had so much pain and stiffness in every joint that I could hardly move or eat.

I was sent to the rheumatologist, and this doctor really knew what he was doing. He didn't put me trough al lot of useless tests, just tried to move my joints, asked which movements hurt the most and said: you have crohn related arthritis. According to him it is typical for crohn's related RA that pain medications such as tramadol and nsaid's do not work.

He started me on depo-medrol injections, what a wonderful stuff! It took about 2 weeks, but then I started feeling better each day, and after 3 weeks I was completely pain free. Got the second injection after a month, since the third one I can call whenever my joints start hurting. The time between the injections is getting longer each time, last injection I needed after 5 months! 
And from the depo-medrol I have no side effects, absolutely none...

I hope that some of you can be helped with this stuff the same way I was. Don't know of depo-medrol has a different name in other countries, but I have been reading different stories on this forum, and so far no one said anything about depo-medrol.


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## dave13

Glad to hear depo-medrol is helping you,lente.It would be simpler if meds had consistent names,no matter where there marketed.We shouldn't be as familiar with different types of meds like a pharmacist,too much.I won't rant about meds...glad your doing well,lente. :smile:


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## pink&green

Hubby went to see PCP today about his joint pain, breathing and side effects of Remi. Dr didn't like what he heard so he sent hubby over for chest x- rays he also requested lab work for his arthritis. Hubby has elbow, shoulder, and wrist pain he also had knee surgery in 2012 there was lots of arthritis in the knee.


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## Essieluv

My arthritis in my back has been so bad today. Pain is at a 9 when I try to move or walk, hopefully some percocet will help. I really want to avoid the ER...


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## lente

I would strongly advice those who haven't tried it yet to ask the rheumatologist for DepoMedrol (Also called SuloMedrol or methylprednisolone). It's a sort of prednisone, but works long-lasting and not as aggressive as regular prednisone, which makes the side effects almost non existing for most patients. 
For me it works wonders, also for my niece and 4 other Crohn's patients whom I personally know. All of them experience no side effects whatsoever, and the time between the injections varies for all of us between every 2,5 months to every 6 months. 
I really hope someone is helped with this stuff as wonderful as we are, because I sadly know very well in how much agony you all are! 
Best of luck to all of you! :hug:


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## Dianna lynn

boydman said:


> I have had joint and muscle pain on a constant basis(probably because i install cabinets every day) but also surely a result of having crohns and not being able to get essential nutrients. I have tried a new health drink that contains 13 servings of fruits and vegetables in  one 3 ounce serving it has helped me temendously with my aches and pains as well as other ailments   have


What drink is that your talking about i have been having large amounts of joint pain in my knees wrists and back and my primary care doctor put me on loratbs but it doesnt seem to help so anything will help me about the pains i will be back on prednisone ina few days and I am regretting it


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## Jajabinks

Essie, how are you feeling? I am doing really badly with my back as well and took a Percocet which may me dizzy but helped a bit.


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## Essieluv

I'm not doing well at all... But apparently my arthritis isn't flaring too badly, my pain is coming from fibromyalgia. Yikes!


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## Sparkle2012

Jajabinks said:


> Essie, how are you feeling? I am doing really badly with my back as well and took a Percocet which may me dizzy but helped a bit.


jajabinks:  how are you doing with the turmeric?  Do you think it has helped you?  I notice a difference in my achy hands when I forget to take it.


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## Jajabinks

Essie the nerve pain comes with the arthritis. It's possible there is some active inflammation in your bones somewhere. I get nerve pain in my legs that mimics Fibro but it's really enthesis. The arthritis affects my muscle and ligaments in the joints.  I've heard things like Cymbalta and Flexeril work so I am hoping my primary can give me something tomorrow.

Sparkle, turmeric and slippery elm are my favorite. I feel a difference with the slippery elm. As a matter of fact, it's listed in the Crohns for Dummies book as a great herb in the alternative medicine section. It helps both my IBD and joints. I need to order more ASAP! I like the turmeric in powdered form in my warm almond milk. Everything in it's original state instead of capsuled seems to work better for me.


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## jazzygirl52

drew_wymore said:


> I've got pain in my wrists, shoulders, hips, knees, ankles and feet Beth. I've seen Rheums and I'm negative for RA factor but x-rays showed some degenerative stuff going on as well as a genetic thing with some of my fingers .. Might be related to Crohns or the immune problem but not sure yet.


_I have Crohns after years of Colitis/Crohns and then colon cancer.  I did Humira for two years but started having reactions...one was disabilitating knee pain, another was psorasis of the scalp and eyebrows and rash/itching.  Now I am on Remicade.. just a few months and working my way up to the 2 month treatment periods. I am having the worst achy joints - all of them-- that tylenol cannot even touch.  I have used Voltaren Gel (aspirin like rx creme) on the joints and have tried medical mj creams and heat packs and more.  Living in the northeast with cold winter weather doesnt help but this is new since the Humira/Remicade.  I have not been to a pain mgmt doctor, but did just go to an alternative medicine dr who has some supplement that may help and diet (taking out dairy completely..... cant eat fruits and veggies, cant do dairy, sensitive to gluten. UGH)  ....good to know others have the arthritic pains from crohns.. well not good but good to know it isn't just random .  I do not have RA. My brother has RA and IBD though.  UGH_


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## Amn

Hi everyone,
I'm new to the forum, but already somewhat familiar to this page.. I just finally decided to join to share my (brand new) experiences about Crohn's related arthritis... my CD started 9 years ago, never had hardly any joint or muscle issues. But an ileum surgery (late 2014)put me to remission, and in the last few years I got some tastes of lower back pain, knee pain and swelling...they were rather short lasting though. Until a week and a half ago.. when my right knee totally swelled up, then the left joined, then my right ankle got all inflamed and hurt like hell, and any weaker joint in my body followed these too   left thumb, jaw.. 
I don't take any meds, nothing worked out for me just the side effects. I do take supplements, my real medicines. 
Oh, speaking of which, I had been taking Reishi mushroom for about a year and a half, and I finally tapered it off -- guess WHEN... A few days before all the joint issues started.  

Systemic inflammation is the key to all our sufferings... so now I know, that Reishi was really doing great for my system. So last week I went back to it and also started taking high dose of Tumeric extract capsules (with added black pepper extract, it's crucial for its absorption),  and then finally, thanks to just divine luck, I found the best anti-inflammatory supplement I've ever heard of: it's a blend of enzymes that works systematically, called Wobenzym N.

I seriously have all my hope in these supplements listed above, that's the only reason I'm sharing it. I had some improvement with my legs (knees+ankles), but due to all the struggling to walk it also worsened...overall it seems to be getting slowly better. Turmeric takes longer to effect, Wobenzym, not sure, but today was the first day I took it (3x3). I will come back and write about how it goes forward.

Sorry in advance though, but I don't want to spend lots of time on IBD forum again (like I did in the beginning), it is supportive but it also contributes to getting stuck in this "disease identity" and often when many people are so desperate and stuck due to this 'crazy disorder' , it is unconsciously keeping the majority in similar patterns... 

Wishing everyone new ways to open up for this healing journey!!!


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## swamper

I am diagnosed with enteropathic arthritis. In fact I've had more trouble with back pain over the years than I have had with Crohn's. My back pain started with extreme stiffness in the morning. The pain itself is an aching pain mostly in my mid-back that sometimes progresses to a burning pain. Sometimes when its really bad my sternum and ribs get inflamed and its hard to breath without pain.


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## Norton

Does anyone know a good rheumatologist in London. I have had Crohns for nearly 40 years and I have the crohns under control. Now have terrible arthritis in hands, knees, feet, ankles etc and am desperate to find a great Rheumatologist in London. Does anyone know a doctor they trust who is good with Crohns Arthritis. Many thanks, Norton


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## debyflores

I have had arthritis symptoms off and on for years. I live in south Texas, and after hurricane Harvey I had horrible arthritis all over my body...equally on both sides. Went to rheumy and he diagnosed enteropathic arthritis. Has anyone heard of this? I've had CD for 27 years, but things are changing so fast in the realm of discoveries and new medications. The arthritis lasted about 6 weeks and now I'm having a flare in my gut. Any comments are appreciated!


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## Droopy Drawers

debyflores said:


> I have had arthritis symptoms off and on for years. I live in south Texas, and after hurricane Harvey I had horrible arthritis all over my body...equally on both sides. Went to rheumy and he diagnosed enteropathic arthritis. Has anyone heard of this? I've had CD for 27 years, but things are changing so fast in the realm of discoveries and new medications. The arthritis lasted about 6 weeks and now I'm having a flare in my gut. Any comments are appreciated!


I have that type of arthritis too.
My Rheumatologist explained that it’s related to Crohns & can run independently of bowel inflammation


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## debyflores

Thank you so much for responding! Does it bother you often? Mine seems to be associated with my Crohn's flares for some reason.


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## Droopy Drawers

My hands & wrists just kill me when my tummy is going to act up.
The pain in my back is a constant companion.

Rheumatologist sent me to a back specialist who sent me for physical therapy.
All I can have is a tens unit & massage.

We’re expecting a huge snowstorm currently & my back is on fire.

I hope you can find some relief.


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## Debthom

My Crohn's arthritis is independent of what my bowel is doing. Been on lots of sulphasazine which has not worked and offered methotrexate which I don't want. Any more ideas of how to get rid of this awful shooting pain which feels like I am being electrocuted.


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## cmack

I know some people take gabapentin for the treatment of neuropathic pain. I'm not sure that's what you are suffering from though, although it does sound similar. Best wishes.


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## Gfullner

boydman said:


> I have had joint and muscle pain on a constant basis(probably because i install cabinets every day) but also surely a result of having crohns and not being able to get essential nutrients. I have tried a new health drink that contains 13 servings of fruits and vegetables in  one 3 ounce serving it has helped me temendously with my aches and pains as well as other ailments   have


What drink are you taking? I also have pain in my joints and would like to try a natural remedy before a prescription. Thank you.


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