Crohn's Disease Forum » Extra Intestinal Manifestations » Arthritis » IBD and ARTHRITIS post remission?


 
11-10-2013, 07:46 PM   #1
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IBD and ARTHRITIS post remission?

Hi guys,

I need your help. Has anyone ever experienced arthritis AFTER a remission?
I have been diagnosed since 13 years (35 yrs now) and had never experienced any arthritis before. During a bad colitis crisis last year, I had to take a 50mg course of cortisone + purinethol , and within a week, I was healed almost completly. During my cortisone treatment I was highly agitated and enthousiAstic and I overworked with my hands. 2 months after, just when the cortisone was over, I started to feel pain in my wrists and hands. It took 8 months before a rheumatologist diagnosed a mild sero-negative (not RA) arthritis with a bone scintigraphy result. Its been 3 months I am on methotrexate now and still waiting to see some improuvements... Unfortunately, I am starting to feel arthritis in my ankles now. I am seeing my rheumy next week... Its been almost a year now that I suffer from this mild arthritis and clinically, my IBD (ileon-Crohn's + indeterminate colitis) is FULLY in remission. I dont get it. Does anyone know about a chronic arthritis during a remission? ITS BEEN 1 YEAR OF ARTHRITIS WITHOUT COLON PROBLEMS! please let me know if anyone has experienced such a thing with CD, UC or Indeterminate C.

OR HAS ANYONE DEVELOPPED ARTHRITIS AFTER A HIGH DOSE OF CORTISONE?

thank you so much.
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''UC-like Crohn's'' (2001)
wrists + ankles arthropathies (2013)
on: Humira
Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only, Vitamin D + B12 shots
Past meds: prednisone 50mg, 5-ASA (pill, rectal), cortifoam, cortenema, Imuran, Purinethol, methotrexate.

Last edited by CrohnsChicago; 11-12-2013 at 05:23 PM.
11-10-2013, 07:53 PM   #2
Clash
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There are some EIMs(extra intestinal manifestations) of Crohn's disease that run independently of active Crohn's disease.

First there is this:

As previously mentioned, peripheral or axial articular involvement can precede, be synchronous with, or develop following the diagnosis of IBD, often by as many as 10 years. IBD-related arthropathy is part of a subset of diseases broadly termed “seronegative spondy-loarthropathies.” In addition to IBD-related disease, this category includes psoriatic arthritis, reactive arthritis, and idiopathic ankylosing spondylitis (AS). Arthritis occurs equally in males and females and is generally more common in patients with colonic disease than those with small-bowel disease. In addition, arthritis is more common in CD with colonic involvement than UC and is more common in UC with pancolitis than isolated left-sided disease. Subclinical colonic inflammation has been documented in approximately two thirds of patients with spondyloarthropathies
Then one this form runs independent of active disease:

Type 2 peripheral arthritis is polyarticular, independent of disease activity, and associated with fares that can last months or years. The metacarpophalangeal joint is the most commonly involved site. Less commonly involved sites include the knees, ankles, shoulders, proximal interphalangeal joint, and metatarsophalangeal joint. Type 2 peripheral arthritis is not usually associated with other EIMs, with the exception of uveitis. The severity of this arthritis appears to be independent of active bowel disease.
source
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PAST MEDS: remicade, oral mtx, humira
11-11-2013, 03:44 PM   #3
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Thank you very much Clash for your response and link to scientific review.

so I would like to know does anyone out here suffer from Peripheral poly arthritis that is independant of disease activity?


Has anyone developped arthritis just fallowing a heavy course of Cortisone pills?

thank you
11-11-2013, 03:54 PM   #4
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Hello I suffer with enteropathic arthritis quite badly as some others here do to. I have flares of arthritis even when my crohns is said to be in remission it can be really frustrating and incredibly painful.
I hope your rheumatologist can help you get some relief, I am off to see mine on Wednesday but not sure what is going to be suggested.
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11-11-2013, 04:07 PM   #5
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thx Kaleigh,

I see you are taking methotrexate pills, do you feel it is helping you with arthritis? I am taking the injections since 3 months now and still no improuvements, just some hair loss !!!... Injections are said to be better than pills for better absorbtion especially for us IBD sufferer, also less side effect such as nausea or gastro disturbance... I had the info for injections from my gastro team, so I asked my rheumy for the injections. have you considered it?
11-11-2013, 04:19 PM   #6
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I have been on methotrexate for over 2 years now and at first the nausea and indigestion was awful but after a couple of months it settled down. It probably started to work around 3/4 months stage as I slowly increased my dose. For the first year it helped a lot but after I started to get joint pain again. I now have cimzia but I am trying to taper down methotrexate to start a family but so far my symptoms aren't great so I'm just seeing how it goes.
11-11-2013, 04:26 PM   #7
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I would definatley consider going on methotrexate again after I have tried for a family and will see about injections maybe it would work better in the future.
I have lost some hair near my temples but I still have thick hair so it covers it but I don't like wearing my hair up as its more noticeable.
11-11-2013, 04:32 PM   #8
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I am curious to know for how long the arthritis has been affecting you? Its been 1 year for me now. Its long and I am scared because new joints are starting to be affected. I cant wait for methotrexate to kick in, hopefully it will.
When I wake up in the morning, my fingers can bend only half way and it take time before I can use my hands. There is almost no swelling, just a little bit, very minor. I experience mostly pain and stiffeness.
11-11-2013, 04:39 PM   #9
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I have been diagnosed with crohns coming up to 6 years I think and the arthritis 4/5. It didn't start of this bad it would be controlled a lot easier and coincide with bowel symptoms. It's only in the last 2/3 years I have been having real problems with it no matter what is do I always have the pain it is always worse first thing getting out of bed is horrible. There are people who have managed to get it under control though.
The main joints that are affected for me are hips, knees, ankles and in the last year my back has started to get involved and I now always walk with a limp someone asked me the other day will I ever be able to walk normally again I said I really don't know but I hope so. There is always hope even when some days it really doesn't feel like it I try to remind myself of this as often as possible.
11-11-2013, 04:51 PM   #10
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hopefully the cimzia will help you. I wish you all the best so that you feel good enough to be able to conceive. Thank you very much for sharing your story .
11-11-2013, 04:54 PM   #11
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That's ok I don't mind. I really hope the methotrexate starts to work for you soon and you can have relief x
01-16-2014, 09:34 PM   #12
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Hey there, I've been suffering from horrible debilitating arthritis from Crohn's for over a year now. During the summer of 2013 it was so bad that i could barely walk and was stuck in bed much of the time. So far the only thing that has really helped has been Prednisone, which I've been on for 6 months now. I've been on Methotrexate for 3 1/2 months but I don't think that it's helping. I moved from Pittsburgh PA to Phoenix AZ and the warm dry weather has been helping tremendously as well. I really need to try to get off the prednisone soon since it's not good to be on it long term

It's hard to say how related to my intestinal flare ups it is. Normally my flares last only a few days but are very painful and crampy, and usually I can determine what the trigger was. I haven't had a flare like that for over a couple of years, but throughout 2013 I was seeing blood on my stool regularly which is not normal for me, but no pain or anything like what is a normal flare for me, yet the arthritis got completely out of control and was really taking over my life all year last year, so it's hard to say how related it was to the flare because my intestinal situation was so different (not sure if i had a flare or not)

Anyway, I really hope the best to both of you.

Sigh
01-16-2014, 10:10 PM   #13
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hi Sigh,

Im sorry to read about your situation. Blood in your stool may reprensent active symptoms in the colon. Symptoms and disease location can change over time. (happened to me). Did you have a colonoscopy this year while having those symptoms?
have you ever tried sulphasalazine for arthritis? its normally the first step in crohns arthritis.
my first rheumy prescribed to me methotrextae first and that was a mistake. I now have a sulpha prescription, but before I take it, I am trying elemental diet EN as an experiment.
01-17-2014, 06:32 PM   #14
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No I've never tried sulphasalazine. Why do you say that methotrexate is a mistake?

Like I said I just moved to the desert which is 2,000 miles away so I'm going to be seeing a new rhumetologist so maybe they will have a different plan than the one I was seeing in Pittsburgh. The one I was seeing wanted me to start Humira soon which I am a little afraid of so I would be happy to investigate an alternative drug. When are you planning on starting the sulphasalazine? I am most interested to see if it helps.

KayleighMeek, your profile says that you had no improvement with sulphasalazine, do you mean that it didn't improve your intestinal issues or your arthritis? Did you take it while you were experiencing the arthritis?

Oh and yes I had a colonoscopy in september, revealing really big pseudopolyps which are sort of scars from past flare ups that almost completely block my terminus ileum. The bleeding was just from proctitis, which I've never had before and has since gone away (mostly), possibly from the medications.

Also, out of curiousity, is your arthritis symmetrical or asymmetrical? Like is it both knees, both ankles, etc. or is it one ankle on one side, one knee on the other side etc? Also, is it usually the same joints or does it move around? I'm asking because it's strange how much the crohn's arthritis seems to vary from person to person, making it hard to really do research on it.

Thanks for all your help! You guys are awesome! This disease, particularly the arthritis, has really taken over my life for the past year, and it's really good to know that I'm not completely alone in this.
01-18-2014, 01:11 AM   #15
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sulphasalazine should be the first treatment option for crohns arthritis. If that doesnt work, then methotrexate and then ultimately anti-TNF agents. This is the traditional route; conservative approach. I dont know for your specific case maybe it required methotrexate or a immune-suppressive agent for your crohns at the same time? The same typical route is usually taken for IBD (mesalazine, sulpha, cortisone, immuno-suppressive, anti-tnf) unless the disease is really agressive with complications many doctors will now use anti-tnf as first line therapy.

methotrexate was even more of a mistake in my case because I was well in remission for crohns with Purinethol and the rheumy could have simply added the sulpha on top. However she decided she wanted methotrexate for me, but that meant that I had to stop purinethol. So we took the risk to create a flare up for my crohns with this medication I had never tried before. Luckily, I am still in remission after 5 months with methotrexate. The only problem is the arthritis that is ther since a year, just like you.

about IBD arthritis, there are 2 types of peripheral arthritis
and there is also the axial type-(sacro-illiac joints and spine often evolving into spondylitis/ankylosing spondyloarthritis) .

type 1 peripheral arthritis: preceeding or at the same time of the IBD crisis (most common type) tends to be asymetrical , moving from joints to joints and resume when IBD flare resumes.

type 2 peripheral arthritis (less common): independant of IBD activity, bilateral-symetrical with small joints, often involves hands, mimicking Rheumatoid arthritis. It is chronic over months or even years.

I am clearly type 2.

If you would like to know more about it, I suggest you find the fallowing article:

''Peripheral arthropathies in inflammatory bowel disease: their articular distribution and natural history''

written by T R Orchard and al. in GUT, 1998.

the PDF version of the article can be found in google. This article is the best first step in order to understand our situation. If you,d like to read some more, let me know.

these authors (gastroenterologists) are the first to come with a classification of IBD arthritis and are still the only reference today. The litterature on this subject is minimal. I have done lots of reseasrch on the subject because no one seemed to understand what I had.

If you want you can read my other posts in other threads. Before I start sulphasalazine, I am right now doing an experiment!!! Im trying Elemental diet for 4 weeks. I am at day 5. The idea came to me because I found out in the literature that fasting helps a great deal in rheumatoid arthritis and so did an elemental diet trial for 2 weeks. So my exploration for crohns arthritis is completly experimental and I hope it will work!!! I am highly motivated.

im trying anything I can before I take some more pills.
01-20-2014, 09:28 PM   #16
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Yeah I've seen the description of the two types of Crohn's arthritis before but mine doesn't seem to match either one since it's independent of my intestinal activity yet it's asymmetrical and affects mostly the larger joints except for my pinky finger and thumb.

When I first saw a rhumetologist in september he said that I had "the worst arthritis". He was dead serious but I got a good laugh out of the statement. Maybe that's why he started me directly on the steroids and methotrexate, bypassing the more mild medications.

I appreciate that you're experementing a lot. Let me know how the Elemental Diet works. I tried a few things last year but nothing helped except the prednisone.

I'll read the article too.

Thanks!!!!
01-21-2014, 09:54 AM   #17
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Hi again,

yes these are the 2 typical types, but still a few % of people can fall in between as Orchard and al. found out. The 2 types are not clear cut, there seems to be a 20% floating in between.

what amount of prednisone have you been on? and for how long?

in december, we tried a 15mg prednisone decreasing on 2 weeks and that helped me by 25%. It helped speciffically in the reduction of morning stiffness. I went from waking up with fingers blocking at half-way to almost being able to form complete fists. Since beggining of january, this benefit is maintained. is that what you experience with prednisone? my wrists discomfort and lack of flexibility is still fully there along with MCP lack of flexibility.

is your hip, lower back/spine stiff-painful-affected? Did you have X-rays or MRI in that region? Its important in order to rule out spondylitis. X-ray showed possible sacro-illitis in my case, but MRI comfirmed I had no inflammation.

have you tried High dosage of Omega3-fish oil? If not, I 'll send you 2 research projects, one in rheumatoid arthritis and one for spondyloarthritis with good results with high dosage over 3 months study.

also regarding your proctitis, rectum inflammation, I would not underestimate the link between that and the ongoing arthritis. is your proctitis better now because of the prednisone?

Last edited by Lady Organic; 01-21-2014 at 10:38 AM.
02-10-2014, 04:32 AM   #18
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Hi. I am so glad I have found this thread as my situation sounds very like yours lady organic.
I have had crohns for 14 years, with occasional mild joint pains in different places. 2 years ago when my crohns was settled I started waking with stiff fingers. I saw a rheumatologist then who said it was crohns related. It was mild anyway and settled after a few months.
3 months ago I had an op to remove the diseased terminal ileum and I now have a temporary stoma whilst a bit of damaged large bowel ( fistula from ileum ) heals. I have never had crohns in the large bowel.
About 6 weeks after the op the stiff fingers started again, and it has got progressively worse over the last 6 weeks. It is worst when I wake up, on both sides and it is now also starting to affect my wrists, shoulders and ankles. Like you, there is no swelling or redness, and the stiffness eases with movement. I am baffled by this as I am told my intestinal crohns has gone !! I wondered if it is because after the op I came off a low dose budesonide which I had been on for several years, also the surgeon prescribed a few days of another steroid because I hade a partial blockage, or is this happening because my large bowel is inactive ?
A nurse friend said my symptoms sound like lupus, and it have read about a lupus like syndrome happening when people are on humira and it stops working. I then panicked that maybe I have lupus as well as crohns !!
I have not been to the doctor because I keep hoping it will go away and I can't face another round of hospital visits and being prescribed more drugs. I'm scared to get another diagnosis !
However it is definitively much worse than 2 years ago, it wakes me in the night often, sore shoulder now as well as numb stiff hands and I am worried it will keep getting worse, so I need to do something.
Like you I am trying to follow an anti arthritis type diet with turmeric and berries and veg, no gluten, less dairy and sugar, but no found benefit yet from this.
Thank you so much for sharing your experience and finding out about this condition. Thanks for the great research you did. I will now see my doctor and show him the article you mention. I will also start with sulphasalazine if I do have to take medication for this.
I hope the elemental diet works and gets you into remission with the arthritis. Please let me know how you are doing. I used elemental diet a lot for flares of crohns. So I may try that too. I also wondered about trying the SCD diet before starting medication.
It is so frustrating to have to deal with this just when We should both be enjoying better health with crohns remission. I also need to be well enough to have the reversal op in a few months time.
Please do let me know how you are and I hope we can share some positive experiences with this.
02-10-2014, 09:29 PM   #19
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LadyOrganic!

Hey there, I will make this quick since I just typed up a long response which this site deleted when I hit the 'post quick reply button'...

Anyway, sorry it took so long to get back to you! i've been on an elimination diet for the past 3 weeks but have yet to see much benefit. Gonna give it another week or so. How is your elemental diet?

I've been on prednisone for 6 months, starting at 40mg/day and now i take 15-20 a day. It works wonders and has given me my ability to walk, but I need to get off of it because of the long term side effects.

In reply to the rest of your post, I am sero-negative so no Ruematoid. Proctitis is better and only see blood ocasionally. Tried high dose fish oil for a few months last year to no avail.

I just got a Rx for Low Dose Naltrexone today. Hoping this works so I don't have to do Humira.

Please let me know how the elemental diet is working for you!! I am very curious and it's interesting you are doing it while I do the elimination diet!

Sigh
02-11-2014, 08:32 PM   #20
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Hi Tryagain and welcome to this thread.

it does seem like you have a crohns arthritis, the type 2 peripheral just like me. However, I'd really encourage you to see a doctor (rheumy) so that you can have the blood tests to rule out Rheumatoid arthritis or lupus. The chances are really low in my humble opinion, but just in case, its wiser, especially that RA is destructive and can cause damage to the joints. Are you sure you have no swelling? Mine was/ is very minimal, but it was there especially in the first months, I couldnt wear my usual rings. Since january 2013, its been decreasing slowly and especially after the cortisone in december 2013. and even more now.

The fact that you had a first episode 2 years ago and that it resumed is encouraging. It make me believe it could resume again, even if this episode is stronger.

As for me, I have done 16 days on Vivonex (elemental diet) and after a shortage due to mechanical problems at the factory at Nestle, I decided to do a water-fast. I lasted 7 days!!! It was extremly difficult but I am glad I have done it. It was the biggest challenge i have ever had in my life. fasting was on my mind for a long time but I didnt think I could do it. Reseasrch has shown that fasting is beneficial for arthritis, so I finally decided to go all the way. I am not here to recommend it because its an extremly stressful experience. I took a risk in doing it.

At first, i wanted to do the EN for a month, maybe 2, but after the 7-day fast, I was so exhausted, both mentally and physically that I resumed to vegetable juices and then solid vegetables and brown rice. Tonight, I 'll start reintergrating the legumes, chick peas. I have not yet reintergrated all the foods, and I plan on staying vegan for a while. I belive that meat is bad for the health and therefore should be eaten to a minimum. It rottens in the large bowel at body temperature and destroys the flora.

I am really happy because with this 3 week experiment, I have gained some benefits. Its not remission and I still have some arthritis, but it is weaker. The morning stiffeness has improuved, I feel more strenght in my arms and I have gained flexibility extending my fingers out. My range of motion is definately wider. (I keep a diary with measures) Overall, I think I have gained a 25% improuvement. I wish I could have continued the fasting or EN, but I had to stop because I got scared for my crohn and didnt want to wake the monster up!!!

At this point I really dont feel like I am going to start the sulphasalazine. My condition is acceptable and I have other plans in mind. I keep on the vegan (always excluding gluten) diet and I will start 3 month intensive fish oil therapy in a few week when I will be out of the fasting spiral. Here is a study about RA and mega-dose of fish oil :

http://www.ncbi.nlm.nih.gov/pubmed/2363736

and one study in SPA:

http://www.ncbi.nlm.nih.gov/pubmed/17062435

I am also starting physical activity 30 minutes/day in order to give more oxygen to my body. I found an indoor bike and I put it in front of the TV! I am hoping physical activity will help me. A friend of mine has RA and gentle swimming helps her a lot. After the swimming she can extend and flex her fingers a lot more.

Since you are in the UK and already tried Elemental diet, I would definately encourage you to try it again. It is not stupid to think it can help arthritis and its been studied in RA with success:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2805936/

Elemental extra028 seems like a breeze compared to the dreadful Vivonex!! If I ever plan on doing another round of Elemental diet, whether for crohns or arthritis, I'll do all I can to get E028 from England.

BTW, yes Humira and the like can induce lupus or other inflammatory conditions, arthritis, psoriasis, etc. However, in my knowledge which is minimal regarding those medication, is that when the medication is stopped, the inflammatory induced condition resumes as well. Are you on Humira at this time? what are you taking?
02-11-2014, 08:50 PM   #21
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Hi again Sigh,

you can read about my experiement with Elemental diet and Fasting in the previous post.

yeah you are right, you must get off the prednisone, its been long enough. The fact that you still see occasional blood even now with the prednisone questions me... When is your next gastro appointment? When the rectum and last part of the colon are affected, 5-ASA enemas/suppositories are indicated and can be combined with oral sulpha for greater efficacy. This could be a possibility for you before trying Humira. The sulpha could help for both rectum and joint inflammation. This combination is less toxic and risky than the Humira so it could be worth the try.

Elimination diet can take up to 3 months before showing some improuvement signs, so please dont give up. What did you eleminate?

I know my suggestion might seem radical, but try to go Vegan for a while emphasizing on vegetables for the majority of your food intake during the day. Avocados, boiled squash (easy to prepare with our arthritis) are really filling and you wont feel starved if you eat a lot of them. Eat natural food only and cut all sugars. Its drastic, but thats how you can best know if diet can help you or not.
I eat 2 avocados per day, sometime mixed with other vegetables in salads with olive oil or sometimes plain with non-raffined sea salt.

Last edited by Lady Organic; 02-12-2014 at 10:20 AM.
02-12-2014, 05:10 AM   #22
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Thank you for your advice lady organic. I am amazed at your self control and determination. I can't imagine being able to fast like you did. Thanks for the links to fish oil and elemental diets research too.
I have seen my GP yesterday and she has taken bloods to test for RA and lupus, so I am hoping they come back negative.re the swelling, my whole hands do swell in the night, but not specific joints, my rings are tight and the skin can feel tight too, but they go back to normal at some points in the day. What bothers me is how dramatic and quickly it has progressed from a couple of stiff fingers to waking in the night with really sore fingers and hands and weak achy arms, even after taking paracetamol. And it's strange how when I get up and move around it gets so much better quickly. I have been going swimming regularly and that makes me ache too ! Maybe I need to take things easy for a while.

Sigh M I have read about LDN, I really hope it works for you, and look forward to hearing how that goes.
I really appreciate both of your sharing experience as you are further ahead with your experiments and treatments. I am not on Humira, or any medications at all except antibiotics for cystitis ( and I wonder whether that is also connected to the joint issues ) and like you my reading of information about humira and lupus is that is does go away when the meds are stopped. Oh I also take regular Imodium to help reduce high output from stoma .

My crohns hasn't been as bad as many people hAve it, I got by for many years on the lowest does of budesonide ( entocort ) and occasional elemental diets. I had to have surgery because of a fistula attaching the ileum to sigmoid. My quality of life has been worse since the op ! First I had a blockage and then problems with high output and now this.

I hAve also wondered whether dehydration from having the stoma could be part of the condition, but it seems a very severe reaction to be that and I drink plenty. Also I have recently gone through menopause which can affect joints. I also was told that I have some hypermobile joints, so I have looked into hypermobile joint syndrome as a possible explanation, but again my symptoms seem too widespread, they seem much more to indicate an inflammatory process. Did your doctors consider these other issues ? The problem is that so many conditions have similar symptoms it is hard to know what is going on.

Lady Organic, Do your symptoms get better in the day or do you still have restricted movement, and do you find that your muscles get stiff too ?

I will try the elemental for 3 days now before I go away on a trip, and let you know if there is any benefit. Good luck to you both with your plans.
02-12-2014, 10:50 AM   #23
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Hi Tryagain,

I am in my 30's so other conditions related to aging are discarded. I dont have hypermobile joint either.

when I sleep, I dont have pain.

when I wake up, I am stiff. The stiffeness gets better as the day goes on, but it never comes to feel like normal hands. There is always some restriction. But much better now than at the beginning of this journey. I help the stiffeness by diping my hands in hot and cold water alternating for a few minutes when I wake up. 2 months ago, it would take me 2 hours before feeling like I could go out freely. After the prednisone and Vivonex and Fasting, I am ready to go out in 30 minutes. I have gained a lot of freedom and really hoping I'll be able to maintain this condition and not regress.

if I do too much of a repeated activity, like cutting food, I can start to feel pain that can last for 24 hours and it irradiates in my inside wrist and arm, really aweful feeling. But its been a while now that I got this bad feeling. However, i must be conscious at all time to be careful not to exceed my limits and to find the good balance between moving and resting. My wrists are the most sensitive, annoy me a lot more than the MCP or fingers. In november 2013, I went through a ankle episode that lasted for 3 weeks after having sitten with my legs crossed. I got so worried the arthritis would evolve in my ankles, but, it finally setlled down after 3 weeks. It was 1 ankle in particular but during this 3 weeks, I felt discomfort in both my knees on some occasions and on this other ankle too. Since then I never cross my legs again!!! and always sit very ergonomically never pressuring any joint!

the thing that worries me the most is that since this full year, I have been having gradual muscle atrophy in my hands. The rheumy is not worried, but I think its pretty intense. My inside palms are really atrophied and we can see all my tendons very clearly, its hard to understand since my arthritis is mild...

Have you talked with your doctor about trying EN? I am thinking about that with your stoma. I have no knowledge regarding stoma and EN.

all the best to you too, lets keep in touch
03-06-2014, 07:25 AM   #24
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Hi lady organic and sigh.
I would love to hear how you are both doing.
I have had my blood results, no lupus or RA markers, which is good news and makes me fairly convinced I have the Crohns peripheral type 2 arthritis. It would be good to find out more about this, like whats the chance of it going into remission ! I am also interested to know if the trauma of surgery / stopping longerm steroids / by passing my large bowel with ileostomy has anything to do with it. I would really like to know whether having the ileo reversal surgery is likely to improve the situation ir make it worse. So many questions and there is so little I can find about this condition on line. Do you know if Is it possible to put out a general question on this site to all members to ask if anyone has this and if so what their experience is ?

My symptoms have got a little worse, still mostly my wrists and finger joints but also painful shoulders have woken me, and sometimes my knees, apart from the hands the other pains come and go.
I hope that the LDN and diet therapies are working well for you both. I have been cutting down dairy meat and sugar and trying to stay gluten free, but can't say I have noticed a difference, but then I have had the odd piece of bread / cake, so maybe not strict enough.

There is a book called the IBS low starch diet, which is really about how starch affects ankylosing spondylitis and related gut conditions. The arguments a bit like the one in Breaking the Vicious cycle ( specific carbohydrate diet ) and it makes sense. I imagine maybe the lining of my small bowel is weakened or "leaky" allowing bad bacteria to pass through causing an inflammatory reaction. So eliminating the bacteria and the conditions in which they grow and thrive is crucial.t seems similar to the anti inflammatory diet. The problem is I really need starchy food to manage this stoma so I can't stick to these diets just now.

I am waiting for my first rheumatologist appointment on 14/4 for more tests. Meanwhile I have started a course called " mindfulness for health " it runs over 8 weeks here in manchester. There is a book with CD which is very good and available on amazon. It's called Mindfulness for Health by Burch and Penman. It is helping me deal with these symptoms and my anxiety too.

So I hope you are doing well and to hear from you

Tryagain
03-06-2014, 08:34 AM   #25
Lady Organic
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Hi Tryagain!

good to hear its not other diseases you have. very little is known about type 2 peripheral arthritis, even most rhuematologist or even gastro dont know about it. My first rhuemy kept telling me '' your pain means your crohns is coming back, its coming back!!'' Well its been 14 months and its NOT coming back, IDIOT!'' She knew only about type 1 arthritis in crohns...

We can suppose, well in my case, thats going off strong corticosteroid dose (50mg) combined with lots of manual work also combined with a long year of colonic disease all triggered a articulary condition I was predisposed or more vulnerable... There are some genes (HLA-B44) which is related to peripheral arthritis type 2. With this gene and crohn or UC, and peripheral arthritis type 2, we are also more at risk for Uveitis, an eye inflammatory condition with crohnies. So if you ever notice prolonged redness in your eyes, see an eye doctor.

In the only descriptive article to date, by Orchard 1998, its said the average time the arthritis lasts is 3 years. But it can go much over that for some people. Nothing else is widely known as no other resaerch have been done since then. Its been a year for me, and I can say the tendency is to go lower. I am pretty positive, within a year or two it could be over at this paste.

I met a guy I know with RA and he is treating himself since years with 500 mg glucosamine 3 times /day, no medication. he said he reached remission in 2 weeks. I am going to try it along with the omega 3 high dose.

Did you try Elemental diet? another of my friend here in Montreal with active RA will try a course soon too. I cant wait to see the result in her.

When we try an food exclusion diet, the food must be eliminated at 100%. If its not, then yes the damage continues into the small bowel for increased permeability and its letting penetrate the toxines inside the blood.

The author of a French book here in Québec has just translated her book . here it is :

http://www.amazon.ca/End-Pain-Nutrit...ne+lagac%C3%A9


She is retired director at medical Immunology departement at University of Montreal, she reached RA remission with Dr. Seignalet hypotoxic diet. And she brings to us the knowledge of Jean Seignalet who treated more than 2000 people with chronic inflammatory diseases in France, including crohns (UC failed the nutritional treatment). I have a friend with a crohns a lot more complicated than mine who is now fully in remission for more than a year with the diet. She takes no medication, only the diet. The diet allows no-gluten cereals, such as buckwheat, quinoa and rice, so it is a little bit different that the no carbo diet.
04-04-2014, 07:38 AM   #26
Lady Organic
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Sigh, I would like to ear of your new treatment, Low-dose-naltrexone. How are you, is it improuving your arthritic condition? Do you continue the methotrexate?

Whats up Tryagain? how is your arthritis, any development?

as for me, I am doing intensive acupuncture with needles and a laser at a acupuncture school twice a week (less expensive, 20$ per treament).

I am thinking also of trying what is called Magnetic pulse therapy. This therapy is more expensive, but this should not stop me in my research for that missing piece of my puzzle.

04-06-2014, 12:04 AM   #27
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Hey there, thanks for checking up!

I stopped the methotrexate in late january/early febuary because it was doing nothing for me except making me feel ill a couple days a week.

I tried the LDN for over a month, starting at 1.5mg and working up to 3mg, but had to stop because I believe it was counteracting the prednisone and my symptoms were actually getting worse. I take that as a good sign however that the LDN was having a powerful effect and will try it once i'm off the prednisone someday.

Now I'm continuing the prednisone and have been taking sulfasalazine for 2 and a half weeks. not sure if i see an improvement yet. im now taking 2000mg of the sulfa, might be taking more. if it doesn't work within a month then i go on humira, which ive been avoiding...

also i have recently gotten steroid injections into my knees and ankles which has helped to varying degrees.


does the accupuncture work for you?
04-06-2014, 09:11 AM   #28
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Hi Sign,

good to hear from you. Its too bad the LDN didnt work for you. Some people here use it for crohns with positive results. You may be right about the drug interaction because I have read, for instance that LDN shoulnt be given when taking immuno-suppressant. And yes it could be a possibility to try it at some point if the sulpha doesnt work.

Im glad you're trying the sulpha and really hoping you get a positive response from it. About the sulpha, I discussed with my rheumy last time and I told her I was postponing taking it because I wanted to try natural experiences first. She told me to remember that sulpha can take up to 3 months before taking effect. Did you rheumy had another opinion on the subject? Where you at with the prednisone? when is the last dose planned?

have you ever tried Imuran (azathioprine) for your crohns? I have read it can be prescribed for arthritis, its a immune-suppressor medication such as Purinethol and methotrexate... But just like mehtotrexate and sulpha, it can take in between 7 weeks and up to 3 months before being effective. I have tried it in the past for my IBD when Purinethol was back order but discountinued taking it because it was not effective in my case.

About acupuncture, I have done 9 sessions so far and plan on doing a total of 20 or 25 sessions. I dont notice any change at this time. They've told me for immune condition such as ours, the treatment is a lot longer than for some other less complex issues.

What I am really wanting to do now is electro-magnetic pulse therapy. Im not sure of the name in English... We lay flat on a mat and magnetic electricity come out from the mat and it would be beneficial for many inflammatory conditions such as IBD n arthritis. 8 sessions is 400$ here. Im really close to trying it. If it helps, we can buy the mat for home use and its 1500$ including installation and teaching. It is mostly known in Europe. Ive also looked at hyperbaric oxygen therapy but thats a lot more expensive. It would be beneficial again for inflammatory condition.
04-03-2018, 09:56 PM   #29
Debthom
 
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I think I have type 2 peripheral arthritis and I was wondering if anyone had found anything which worked. The doctors I have seen don’t seem to know anything about this form of arthritis and so far I have been offered sulphasalasine which has not worked and methotrexate which I am not keen on. I have read professor Orchards work like Lady Organic and what he says seems to make sense. And if it is a problem with the gut then that is the bit which needs fixing. Any ideas since I have been in terrible pain for 3 months and don’t seem to be getting any better. Close to despairing. By the way I have had crohns for 40 years and thought I knew all angles re the disease so really worried about this latest development.
04-04-2018, 04:19 PM   #30
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Hi Debthom,

I understand your situation and distress. For me, the joint issues are more difficult to accept and deal with than the gut issues. After sulfa, I have tried methotrexate injections. Unfortunately it didnt help me. this was the 2nd step proposed by my rheumatologist. Biologics such a Remicade or Humira could be options too. I have never tried them. After 2 years, my hands pains and stiffeness started to decrease gradually naturally without pharma intervention. They are still sensitive and I must be careful not to overuse my joints though. My whole skeleton has become really fragile and I have issues with lots of different joints for my age. At this point, it seems it is not arthritis, but mostly arthralgia from a fragile structure.

have you seen a rhumatologist?
what medication are you on right now?
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