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trickynikki
Regular Member


Date Joined Jul 2003
Total Posts : 481
   Posted 1/25/2008 6:44 PM (GMT -7)   
I have been having joint pain pretty much since I've started Remicade infusions.  I had no joint problems at all before that.  The pain has gone from annoying to unbareable.  I called my dr's office and spoke to the nurse there early this week.  I thought I was clear about how bad this joint pain is, but apparently not, as I haven't heard back from the doctor at all.  The nurse said that lately when the gastro dept. has been calling rheumatology about their crohn's patients they have just been recommending to increase their Remicade dose or decrease the time between infusions.  This scares the hell out of me.  After my last infusion the joint pain was eased for about 5 days and then came back.  I was wondering if anyone else on this board has had this problem with Remicade, or has heard of it.  Does anyone know if switching to Humira would help this problem?  I can't live like this.  I feel like I'm barely making it.  I can't move barely at all in the evenings, I cry every night.  I don't know where to turn, can anybody help me?  Apparently my dr. has no interest in helping me.  I feel like I need to get answers and pursue them on my own.  Anything anyone can offer would be more appreciated than you could ever know.  I have never felt so desparate in my life.
~Nikki


nazeha
Regular Member


Date Joined Aug 2007
Total Posts : 41
   Posted 1/25/2008 6:51 PM (GMT -7)   
i totally wish i could help you out! i haven't been on remicade so i don't know what the symptoms are like. however, i have had major joint pain. to the point of me crying and not being able to move. the only thing i could do was to take lots of tylenol or advil. maybe some sort of arthritis pain relief med will help. i hate how we always have to resort to meds. maybe google natural joint pain relief and it will give you some sort of nutrient that will help without having to take more meds.
i hope you start to feel better soon! 
good luck!
maya
Maya
Diagnosed with CD in Jan 07 after going to different doctors for fissures or what I thought were hemmeroids. After getting a colonoscopy they found out I had Crohns. I had no idea what the hell CD was, but once I read up on it, realized I've had mild symptoms since age 12. I'm now 19.
I have mild to moderate CD, and don't have many symptoms other than my 3 fissures, stomach pain after eating, diarreah, bloating, cramping, gastritis on occasion, and then other random health issues that are caused from CD like gingivitis for example.
Just got off of Entocort (too many side effects) and Cipro. I'm now trying the Maker's Diet as well as a bunch of vitamins and probiotics. Let's hope this helps a bit!
This site is great for support.
<3
 


trickynikki
Regular Member


Date Joined Jul 2003
Total Posts : 481
   Posted 1/25/2008 7:00 PM (GMT -7)   
Nazeha, Thanks for the reply. I was just wondering if you still were having the joint pain, or if you found somehting that helped it to go away for an extended period of time. Tylenol extra strength helps my pain sometimes, the arthritis stuff barely puts a dent in it for some reason. Thanks again for the reply.
~Nikki


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 1/25/2008 9:27 PM (GMT -7)   
Nikki,
I would very much like you to "timeline" your joint pain. You said that you never had the joint pain prior to Remicade. And you said that after the infusions you are good for about 5 days. Take us through what happens during the time between infusions. Are you in unbearable pain starting on post-infusion day 5 for the rest of the 8 weeks? Or does the pain come on like gangbusters on day 6 and then gradually lessens prior to your next infusion?

The reason I am asking these questions is that your doctor needs to know what might be possibly causing the joint pain - either the Remicade because you have built up antibodies, or you have Crohn's related arthritis. There is a test to determine if you have built antibodies. If it is Crohn's related arthritis then it might help you to have infusions closer together or an increase in dosage. I had to have my infusions every 5-6 weeks and my dosage was increased from the normal 5 mg/kg to 7.5 mg/kg.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


trickynikki
Regular Member


Date Joined Jul 2003
Total Posts : 481
   Posted 1/26/2008 6:50 AM (GMT -7)   
Ides,
I, unfortunately, have not kept great record of my life from my first Remicade infusion. Which I realize now was a mistake. The last time I saw my doctor she was asking me questions that I unfortunately didn't know the answers to as well. I believe I started my Remicade in late August (could have been a few weeks earlier or later). Shortly after that I started experiencing joint stiffness and mild pain. It was annoying, and made parts of my yoga workouts difficult, but that was pretty much it. It was bad enough in my shoulder that I considered going to a doctor in late October. I'm sure I had another infusion after that, but I don't have a for sure date or any kind of record of the pain, unfortunately. The day after Christmas is when it became a real problem. I could barely move, I was so stiff, and in terrible pain. The 27th of December I had an infusion. The day after my infusion my joint pain was gone. I totally thought that the Remicade had helped it and that I had been wrong all along about it causing it. But less than a week later my joint pain started to return. It started with the stiffness. Then the more severe pain at night. Then about a week and a half ago, less than a month after my infusion, the pain had fully returned. It's to the point where it's hard for me to do my job. I have difficulty getting dressed. If I sit for an extended period of time it takes me a ridiculously long period of time to get up, and I can't straighten my legs to walk. Sometimes I can't bend my arms to touch my face, depending on how bad the pain is. It's terrible. I mean, I can handle pain. I have this disease, right? I just feel like this is ridiculous and unacceptable and my doctor should be doing more for me or paying more attention to this. Right now, I just want to get some answers on my own and call her and tell her what I want done. I'm just not sure of what that is. I'm thinking I'd like to switch to Humira, if that would help, but I don't know if it would.
Do antibodies cause joint pain? I'm definitely going to ask if I can have the test done to determine if I have built up antibodies. Thank you so much for your reply, Ides. Figuring this out and what to do about it means so much to me and my life right now. I am so appreciative that you took the time to reply!
~Nikki


trickynikki
Regular Member


Date Joined Jul 2003
Total Posts : 481
   Posted 1/26/2008 6:52 AM (GMT -7)   
It might also be worth mentioning that I've had a constant sore throat ranging from mild to severe for several months now. Something I also had wondered if it were Remicade related.
~Nikki


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 1/26/2008 12:14 PM (GMT -7)   
I can't help you with the Remicade/joint pain issue, since I'm not on Remicade. But I have had CD joint pain for years and could not tolerate any of the normal pain relieving meds. The only option my Rheumy offered me was acupuncture. I was more than skeptical. But I tried it, and I was surprised. It isn't a miracle cure, but it does offer relief. It isn't right away, it takes a few treatments and you do have to keep it up. Some insurances will offset some of the cost and there are some low cost clinics, but it isn't cheap either. But it has made it so that I can function.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 1/26/2008 12:25 PM (GMT -7)   
Remicade can produce a lupus like syndrome, you might want to check into that...
Forum Moderator 
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...


Mr.Beebe
New Member


Date Joined Jan 2008
Total Posts : 11
   Posted 1/26/2008 7:11 PM (GMT -7)   
I would get an x-ray to see if there is some kind of orthopedic cause. I was on high doses of prednisone. It gave me avascular necrosis (dead bones in my knee and ankle joints). The doctors thought for a long time that I had developed juvinile arthritis. Luckily I got an x-ray and found that it was necrosis. I don't know if remicade can have this effect. It certainly didn't for me. Aevascular necrosis is really bad, it can effect the cartilage, and cause the bone to deteriorate. i am lucky that I made a full recovery and am able to walk again. i spent 2 years on wheels becasue of it.

trickynikki
Regular Member


Date Joined Jul 2003
Total Posts : 481
   Posted 1/26/2008 7:53 PM (GMT -7)   
Thank you all so much. You've given me a lot of things to look into. I appreciate it!
~Nikki


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 1/26/2008 8:44 PM (GMT -7)   

Nikki,

My recommendation is that you get yourself in to be evaluated by a rheumatologist. You could have a lupus-like reaction to Remicade as suggested, or one of the three types of arthritis associated with with CD. The CCFA has a brochure that describes the types.

The stiffness and difficulty getting moving are exactly what I experienced. I ultimately was diagnosed with Ankylosing Spondylitis. Please get a referral [if needed] or make an appointment with a rheumy right away.


Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


major2008
New Member


Date Joined Jan 2008
Total Posts : 1
   Posted 1/27/2008 7:00 PM (GMT -7)   

hi nikki

 I hope you find your answer soon because that is no way to live. I went though that when I tried to get off of remicade. I  thought that I had the flu. They also thought that I had lupus.  The test came back positive but the dr said that it was a false positive from all the meds I was on. So please make sure that you go to someone who is going to make sure everything is checked. I got back on remicade and everything is great . Good Luck

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