Arthritis and Crohn's - help!

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jhicks
Regular Member


Date Joined May 2009
Total Posts : 177
   Posted 5/17/2009 5:30 PM (GMT -7)   
Hi everyone,
 
I am curious what others' experiences have been with arthritic pains and Crohn's. I have been in remission for 4 years. Valentine's weekend, I noticed a strange, click-like sensation in my right foot as I was trying to put on my shoes. Later in the day, the pain became more pronounced and the outside of my right ankle began swelling. At first I thought I'd somehow injured it or had been bitten by something and that it would go away. It persisted and kept going about my normal routine. I also began having intermittent and migratory knee pain between both knees. The pain and swelling would often shift between the outer and inner ankle and sometimes occur on both sides. Two weeks later, I drove over 200 miles round trip to see my grandmother. The next morning, my ankle was huge, I couldn't get it in a shoe and I was in so much pain I had to go to the ER. X-rays were normal. Swelling continued throughout the day but went down with elevation each night. Went to an ortho who drew fluid to test for gout. It was negative. Had an MRI that just showed extreme inflammation all around the joint, but no damage or root cause. about a month ago, my right jaw began hurting, too. Some suspicion of lupus or rheumatoid arthritis, but ANA tests were negative. Finally had colonoscopy last week that showed two areas of inflammation in my colon and confirmed Crohn's is active again. Small bowel exam was normal. Prior to my last flare, I had arthritic pains in my knees and shins. I am now taking prescription Mobic (and NSAID) to control the pain, along with Turmeric, fish oil and Osteo-biflex and Pentasa, but the swelling persists.
GI wants to begin a regimen of Remicade asap.
 
Anyone else have arthritic pains with their flares? And any success with remicade to resolve it?
 
Thanks.

isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 5/17/2009 5:34 PM (GMT -7)   
Remicade and acupuncture helps me.
I also skip wheat that helps alot.

I hate this joint pains more than I hate my crohn's.

Good luck hope you feel better soon.
24 year old female
Diagnosed with Crohn's disease in December 2008..
Medication - Asacol, Remicade, Entocort, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~


jhicks
Regular Member


Date Joined May 2009
Total Posts : 177
   Posted 5/17/2009 5:38 PM (GMT -7)   
Thank you. I am starting acupuncture tomorrow. Can you tell me how many sessions you did before you noticed any difference? My insurance does not cover it and I was recently laid off. Not sure how long I can afford the treatments. I am so psyched about my appointment tomorrow. Not so much for remicade.

Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 5/17/2009 5:47 PM (GMT -7)   
I've had the ankle swelling. The swelling isn't in my joints (which is why nothing showed on my X-rays). It's the swelling of my tendons around my ankle joints.

When my ankles swell, its a warning to me I'm going into a flare, usually. The swelling usually gets so bad I have to use crutches and can't walk or drive for about 2 weeks.

My GP & GI had no idea why my ankles were swelling and basically gave me no help until I suggested Crohn's Arthritis and ask they recommend me to a Rheumatologist. The Rheumy immediately said it was Crohn's-related arthritis and threw me in the Ankylosing Spondylitis category. She wanted to put me on Humira, Remicade or Enbrel, but that was a little too fast for me to be thrown on any of those drugs. I chose NOT to go that route...yet.
Diagnosed in October, 2004 at age 32 (misdiagnosed with IBS in 2002)
37/F/SC
Current Rx's: Colazal (generic), Omeprazole, Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Cranberry pills
Secondary conditions: swelling ankles, extreme fatigue, mouth ulcers, joint pain
Previous/occasional Rx's: Prednisone, Flagyl, Levaquin, Xifaxan, Carafate
4/7/09: Gall bladder removal laproscopic surgery (gall stones)


jhicks
Regular Member


Date Joined May 2009
Total Posts : 177
   Posted 5/17/2009 6:23 PM (GMT -7)   
What did you do?

omigrandma
Regular Member


Date Joined Dec 2008
Total Posts : 57
   Posted 5/18/2009 4:10 AM (GMT -7)   
I am experiencing all the same symptoms and also the Crohn's and Colitis have now caused extreme pain in my back, hips, knees and ankles. In addition to all the meds like the Remicade etc. the pain doctor has recommended Aqua Therapy 3 times a week for 4-6 weeks. Now if the Insurance Company would only approve it I would be on my way. For a while there I though I was imaging things but between all the potty trips and the all over pain, I just want to curl up and cry. There are days when I think that I just can't deal with all this anymore. But I know that things could always be worse but this is sooooooooooo depressing.

Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 5/18/2009 9:16 AM (GMT -7)   

Hey hicks - I didn't/don't do anything...except wait out the swelling. 

When the swelling is REALLY bad, it'll take about 2 weeks until I can a) move my ankles and b) walk without crutches or without hopping.  Then for another 2 weeks I'll have a limp or have some pain in my ankles when I walk but by that time my ankles can MOVE around enough to where I CAN walk and drive.  But at their worst, there is NO movement in my ankles.  Stiff as a board and hot to the touch.

Luckily I have a job where I can work from home if I need to.  It's easier to rush to the bathroom on swollen ankles and crutches at home than it is at my office.  So when my ankles are so swollen that I can't walk or drive, I work from home.

The Rheumatologist told me that she "believed" the kind of swelling I'm experiencing is NOT affecting my joints...that was one of my worries that if I allowed the swelling to continue WITHOUT taking a drug like Remicade/Humira that one day my ankle joints/bones would deteriorate and I wouldn't be able to walk again.  But she was certain that my joints were fine (since the X-rays showed healthy ankles) and it was "simply" swelling of the tendons around the ankles which made it appear/feel like my joints were the parts that were swelling.

Currently, my left ankle is swollen but I THINK it is from standing for 4 hours applying makeup to a group of teenage girls at a youth retreat this past weekend.  The swelling is not (yet) painful and I can still walk.  In this situation, I do take 2 Asprin/day for 3 days which usually helps.  Asprin has not (yet) bothered my stomach and I have the OK from my GI to take Asprin in small amounts when my ankles swell.  It usually helps.

 
 
Diagnosed in October, 2004 at age 32 (misdiagnosed with IBS in 2002)
37/F/SC
Current Rx's: Colazal (generic), Omeprazole, Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Cranberry pills
Secondary conditions: swelling ankles, extreme fatigue, mouth ulcers, joint pain
Previous/occasional Rx's: Prednisone, Flagyl, Levaquin, Xifaxan, Carafate
4/7/09: Gall bladder removal laproscopic surgery (gall stones)


jhicks
Regular Member


Date Joined May 2009
Total Posts : 177
   Posted 5/18/2009 11:10 AM (GMT -7)   
@Omigrandma: I am so sorry to hear of your pain. I can certainly relate to some of what you're going through, and it is quite distressing and painful. I've had a couple of crying fits in the shower myself. The Mobic definitely helps with the pain, but not necessarily the swelling.

@KittKatt: Thank you so much. My ankle has been swelling for three months now. I was on crutches for about two weeks at one point, and I definitely experienced the extreme stiffness, especially in the mornings. I'm considering Remicade because my stomach is starting to present symptoms and the ankle issue has not resolved in more than 3 months. From what I've read, it usually lasts 10 weeks, maximum. With an 8 and 2-year-old, it is really hard to stay off of my foot and it is really limiting my ability to do things with my family.

I am giving acupuncture a try today, and am praying for guidance in making the medication decision.

I really, really appreciate everyone sharing their experiences. It is SO helpful to know you're not alone!!

God bless.
Joyce

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 5/18/2009 11:48 AM (GMT -7)   
There may be two things happening - one an autoimmune reaction to the joint cartilage and the other a chronic inflammation of tendons caused by TNF interfering with normal healing of tendons. The only thing likely to help the autoimmune problem is steroids/biologicals - if that is what's happening. The TNF problem may be helped by vitamin D. It has been shown to modulate the immune system and TNF reduction is one part of that. Of course, the biologicals target TNF too, but they are expensive and have side effects. I would try the vitamin D first, but don't expect immediate results. I have been taking 2000 IU of vitamin D for the last 2 months and a chronic elbow and shoulder tendinitis is slowly resolving after more than 10 years.

lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 5/18/2009 1:10 PM (GMT -7)   
I have had arthritis in my hips, wrist and jaw (there was a post on this forum a while ago about the surprising amount of Crohn's people here with TMJ issues). My doctors call it either Crohns arthritis or reactionary arthritis, and that even though it is immensely painful and there is inflammation there it apparently doesn't cause lasting damage to the joint its affecting.
 
I find that when my joints flare it means a Crohn's flare is about to follow. Remicade has always so far managed to put both my joints and stomach in remission. A steroid injection straight into the joint can also help. I also found swimming helped loads as just being in water took the pressure off the joint so the pain reduced straight away and the movement would help disperse some of the fluid that had settled in the joint.
 
 


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 5/18/2009 3:11 PM (GMT -7)   
I too found vit. D to help my joints and tendons. Yeah they all hurt a lot. I feel crippled badly somedays, but it is better when I get moving in water. So that hydro therapy is the greatest. But just deep water moving in a belt works wonders if you can't afford other stuff. Some classes have teachers that are very knowledgeable. Getting the blood flowing through affected areas is most important.Hope you get some relief soon.

jhicks
Regular Member


Date Joined May 2009
Total Posts : 177
   Posted 5/18/2009 4:44 PM (GMT -7)   
Guys. Thank you so much! Please keep the exchange of information coming. I am finding lots of comfort in hearing what works for you and that I'm not the only one who feels she is literally falling apart, piece by piece. I forgot to mention that I have lovely canker sores, too! I will definitely try increasing my Vit. D intake. I tried acupuncture for the first time today. I was so excited to try it. It was very weird. I am trying to keep hope about it, but my insurance doesn't cover any of it and it is going to get expensive - quick! $65 a session, and from what I've read, I'll need 6-8 sessions, likely. I was laid off last month and my husband is our sole support. A lot of pressure on him to support a family of four, especially with noncovered treatment pursuits plus high deductible infusions and such. (I haven't heard whether my insurance will cover - or how much it will cover - for Remicade) Acupuncturist suggested I hold off on the infusions to see if the treatments work. Don't know how I could measure this, unless the ankle swelling resolves and other extraintestinal issues go away. I still wouldn't know what is happening in my gut. Speaking of which, anyone had stool analysis or leaky gut check to see if you have too much or too little bacteria? Acupuncturist has suggested it, but it's $200-$300 and not covered by insurance. ARGH!

Please keep sharing your experiences and insight.

Blessings,
J

Heathereno
New Member


Date Joined May 2009
Total Posts : 10
   Posted 5/19/2009 7:08 AM (GMT -7)   
Remicade is awesome. I have not had any swelling like I used to in my joints since I started Remicade.  Remicade is also used for RA (Rhumetoid Arthritis) as well so it is no surprise it does help the joints in Crohn's patients.  I am only on Remicade and no other drugs for my Crohn's and feel great.
 
There are resources to get assistance for Remicade. I posted them but let me know if you need them.
 
 
Diagnosed with Crohn's Disease at age 10, now 38.  Have had 5 major surgeries.  Been through it all. Finally found relief about 3 years ago when I found a great GI Specialist that put me on Remicade. If you need any info, please send me message. 


jhicks
Regular Member


Date Joined May 2009
Total Posts : 177
   Posted 5/19/2009 11:30 AM (GMT -7)   
Please do post them. How often are your infusions?

Thanks!

sickliz77
New Member


Date Joined May 2009
Total Posts : 12
   Posted 5/23/2009 12:25 PM (GMT -7)   
Hi everyone! I am new here. And I am finally feeling like someone might actually know what I am going through. I am 31 with two small children and a very demanding job, and am suffering terribly cry . I have severe inflammation in my joints, especially the knees, and my CIBD is more than one person can bear. I currently have NO doctor. My PCP refuses to treat me. She referred me to a Rheumatologist that my ins. won't cover, and my GI doc sucks! He diagnosed me with CIBD after a colonoscopy/upper endoscopy and literally spent 2 minutes with me and said "Ok here's another Rx for Nexium". He NEVER even gave me a darn pamphlet to explain to me what CIBD was, or what my treatment options were. He never asked me to come back in. It is only through the internet that I am finally learning about chronic systemic inflammation, and that it's almost never just one part of your body that's affected by inflammation. And I'm learning about TNF's and what auto-immune disorders are. If anyone has advice for me I would LOVE to hear it. I have been suffering for years with these severe bowel problems, psoriasis, and fatigue! Please help!
chronic inflammatory bowel disease diagnosed(FINALLY) in August 2008, Psoriasis, Had severe eczema and asthma as a small child (now no) Psoriatic Arthritis, chronic sinusitis,allergies,  including one episode of anaphylactic shock while having one of my "bowel episodes" at my daughters pediatricians office. Current meds: Omeprazole 20mg in AM,Flonase nasal spray, Quit Bentyl since it was the only med I had taken 30 min. prior to anaphylactic shock. Quit Nexium because it is too expensive! My PCP refuses to treat me, my GI doc only prescribed Nexium, and then NEVER discussed a treatment plan with me after telling me I had chronic inflammatory bowel disease when he got the results from all of my biopsies and test results from a colonoscopy and upper endoscopy. I need a GREAT doctor!


jhicks
Regular Member


Date Joined May 2009
Total Posts : 177
   Posted 5/24/2009 6:49 PM (GMT -7)   
It does sound like you need a good GI, for sure. I was misdiagnosed and treated for four months with 'silent reflux,' before an emergency appendectomy (which turned out to be more likely sepsis) revealed a severe Crohn's blockage! It can be hard to deal with doctors who don't listen and take the actual time to connect the dots. I am considering Remicade, as this arthritis pain is really becoming debilitation. I am only 37, and so very frustrated with this disease! Please persist in finding a doctor who will take the time to listen and review your charts and actually get you on a treatment plan. You are your best advocate (and sometimes the only one!)
Best of luck.
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