Continue Remicade or not?

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almost30inMI
Regular Member


Date Joined Jul 2009
Total Posts : 61
   Posted 3/8/2010 10:39 AM (GMT -7)   
I have been on Remicade for almost a year and it was working great. However, in January (6 weeks after my infusion) I developed joint pain. It would move around and got worse until I had my next infusion. 2 or 3 days later the joint pain went away. I tested positive for HACA antibodies. Now about 4.5 weeks after infusion the joint pain came back. MUCH worse. I haven't been able to sleep and the dr is not taking the joint pain seriously. Referred to Rheum (which said that it was crohn's joint pain).

Dr is recommending moving to every 6wks and I can't get in until the 16th. The joint pain is worse at night or if I sit for a long time. After reading similiar stories, it seems like once you get this pain, you should stop remicade. I am not on the same page as Dr on this one. Do you think I should continue remicade or just get off and get it out of my system? I am leaning toward stopping remicade. Currently my guts are ok just the joints that are hurting.

Thanks for you input

Currently taking - asacol, remicade 8wks, prenatal vitamin
Diagnosed with Crohns in 1998. Been on and off pred, entocort, immuran, asacol. Currently on Remicade every 8 weeks and gotten off all other medications!! *currently in remission*


obxgal510
New Member


Date Joined Mar 2010
Total Posts : 12
   Posted 3/8/2010 11:48 AM (GMT -7)   
I was in the same position as you with the remecaid. I had been on it for 10 years!!! The joint pain got worse after years of taking it. Now that after 2 colonoscopies in 2 years both indicating "no indication of crohns" I decided alternative therapies for the joint pain since that is all I had symptoms for relating to crohns. I too went to a Rheum dr and everything was clean as a whistle but he stated I had to stay on TNF drugs forever. I about fell over knowing the inherent cancer risk. That was my defining moment - I took the leap off of remecaid (GI and primary dr were both agreed w me). This is the first time in 10 years no remecaid- like I told my GI - pain meds will not give me cancer but TNF drugs will. With all of that said- my new treatment plan is as follows: B12 shots once a month; chiropractor 3x per week; Vitamins from GNC with Glucosamine and Chondrotin (specific for joint relief) Vitamin water with taurine- 1- 16 ounce a day, heprine injection for my medi-port 1 per 8 weeks just to keep it open (will come out after a year of monitoring for my new treatment plan); sunshine for 15-20 min a day (either sitting outside or a tanning bed with UVB rays only); exercise 4-5 days a week (walking, exercise class, illiptical machine- whatever i can do depending on how the joints feel for the day); diet of fresh fruits, soft veggies, lean meats (usually fish only) red meat once a month, chicken 1-2 times per month, lots of yogurt and cottage cheese...

I have been doing this since December (last remecaid was Dec 23) - and all is good- no pain meds since then and feel better than ever with no toxic meds in my body anymore. I had to take control of MY life with this disease and be my own advocate. My current treatment plan got the ok with dr's as it is healthy and holistic and WILL NOT GIVE ME CANCER...

I hope this helps

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/8/2010 1:15 PM (GMT -7)   
I think if you are having joint issues that it might be best to get onto a different Crohns med. As remicade could cause lupus like joint issues. But whatever you do, find another med to take. You need to remember that this is a chronic and incurable bowel disease and really should be treated at all tines. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

almost30inMI
Regular Member


Date Joined Jul 2009
Total Posts : 61
   Posted 3/8/2010 3:01 PM (GMT -7)   
Thanks for your experiences. I just got back from my primary doc and found out that i am pregnant. So that takes quite a few medicines off the list. I think I will try the remicade every 6 weeks and see if that helps. I guess if i had to choose what is better for pregnancy, inflamed joints is better than inflamed guts. I plan on seeing the Rheumy before my next infusion.

@tsito - glad that the remicade worked for you the second time.
Diagnosed with Crohns in 1998. Been on and off pred, entocort, immuran, asacol. Currently on Remicade every 8 weeks and gotten off all other medications!! *currently in remission*


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 3/8/2010 4:45 PM (GMT -7)   
Have they tested you to see if you have antibodies for drug induced lupus and lupus? anti-ds-dns and ana I think the tests are called. When my husband had a bout with reactive arthritis, they suspected that perhaps he had developed drug induced lupus, and so they tested him. Ruling that out would be good I think before continuing on TNF therapy.

Congratulations on the pregnancy! How exciting. I hope everything goes well for you, and you get the joint pain under control. I've also read that Vitamin D can help with joint pain, so make sure you take some vitamin D. Is the awful prednisone ok to take while pregnant? Perhaps in low doses, it can help bring the joint pain under control, and be better for your crohn's than having to take NSAIDs to control pain. Of course once you have the baby you can try adding methotrexate, which people say works really well for arthritis.

Hope something starts working soon.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission


sunyata
New Member


Date Joined Aug 2009
Total Posts : 3
   Posted 3/12/2011 8:08 AM (GMT -7)   
I cannot seem to find any current postings on this so I am going to take my chances here.

What is going on with Remecaid? I started taking it in September 2009 every eight weeks for my Crohns Disease. After four months I began to develop joint pain that was mild during the days and get much worse at night. It would last for weeks, was migratory, in different joints every day, but about a week before the next infusion it would become excrutiating. My GI Dr. said that it could not be because of the Remecaid, but rather that after having the disease for 21 years, I had developed a new symptom of the Crohns Disease. And obviously, and this is the confusing part, the day of infusion, the excrutiating pain would completely disappear and not come back for a few weeks. So my GI decided that we should move to every four weeks (effectively doubling my dosage) and then I starrted having joint pain all the time. IT became debilitating at the end of 2010. I could not get in an out of bed by myself, could not hold a glass or pull the bankets up around myelf. I was finally diagnosed with Drug Induced Lupus and the two Rhematiologists I have seen say that all of the symptoms wil go away. In the meantime I have been off Remecaid since November 16, 4 months, the pain is still very bad and I am not seeing any changes.
I am curious as to whether your pain has disappeared or whether you are still dealing with it?

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 3/12/2011 2:15 PM (GMT -7)   
I developed drug induced lupus [DILE]. Sunyata, I understand your joint pain and concern that it is not going away. Are your doctors treating the DILE? I was put on Plaquenil and it helped alot with the joint pain. It took about 6 or so months for my joint pain to subside. After a year of being on Plaquenil and four months without fevers, joint inflammation, and negative blood work, I was taken off the Plaquenil.

BTW, welcome to Healing Well, Sunyata!
Moderator Crohn's disease, Osteoarthritis and Irritable Bowel Forums

CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, pulmonary hypertension, degenerative disc disease, asthma, severe allergy and a host of other medical problems.

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 3/12/2011 9:32 PM (GMT -7)   
I to had remicade induced lupus.  Extremely painful.  Prednisone and methotrexate are what my rheumy gave me.  I hope you feel better soon.
 
Julia
 

sunyata
New Member


Date Joined Aug 2009
Total Posts : 3
   Posted 3/13/2011 4:28 PM (GMT -7)   
Julia and Ides,

Thanks for your notes.
I am wondering Ides - is all of your joint pain now gone entirely and of so, how long did that take?

I also wonder as to whether your pain Julia has also disappeared entirely?

I started to take Plaquinol but then developed a severe allergic reaction to it. Then I took a low dosage (15mds) of Prednisone or six week but that had no impact. I began take 75mgs of Lyrica on February 11 and on March 1st I began to experience some relief. The joint pain has in fact improved quite dramatically but I still have extremely painful shoulder all of the time, sleeping is very difficult.

All I really want to know if when am I going to be pain free and be able to be physically active again and if so many people are experiencing this, why didn't they tell us about this possibility? How many off us are there? Are there any other Canadians affected by DILE?

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 3/16/2011 7:48 PM (GMT -7)   
Hi,

My joint pain is completely gone. I was on 25 mg of prednisone/day along with 25mg shot of MTX once/week. Together they worked great.

All the best,
Julia

sunyata
New Member


Date Joined Aug 2009
Total Posts : 3
   Posted 3/17/2011 8:18 AM (GMT -7)   
Julia,
 
You have made my day!!!! To know that there could be an end to this. Ccan I ask how long you had Remecaid infusions for and how long after diagnosis of DILE you became pain free?
 
Thanks
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