Dear Desperatemom,
It's a pretty amazing feeling having a daughter who is a warrior - no doubt, the apple doesn't fall far from the tree. I have been Blessed with one too.
Yes, one of the excruciating side effects of Crohn's Disease is joint pain, and at times it is transient. My transient joint pain was prior to starting Remicade and after verifying with a Rheumatologist, tests, etc. - completely Crohns related.
In short, by the end of a typical day, I would have tremendous pain in a joint or even several joints. When I would awaken the following morning, the pain would be gone. The pain would come back the next evening, at times, in different joint(s). It was like a bad movie - I would awaken and it would be gone and then by nights end it would come back. However, as time progressed, the pain remained longer and longer each time. This was clearly associated with my Crohn's Disease flaring. My drug choice was very conservative; Asacol with an occasional Norco for pain. The Norco would only take the edge off, and my doctor later prescribed Ibuprofen (NSAIDS) which worked extremely better. However, relying on Ibuprofen for too long can create issues… such as, blood loss. In my case, ulcers formed in my stomach and I slowly lost blood over time - ultimately leading me to immediate hospitalization so I could receive four (4) blood transfusions.
It was at this time, I finally pulled the trigger to aggressively treat my disease, thus, I began Remicade. The induction period was amazing, it was as though my prayers were answered and I received immediate healing. This lasted for several months, however, after taking a 9 week break from Remicade; my joint pain was back shortly after receiving my next maintenance dose. My doctor prescribed me small doses of Prednisone to help with pain, however, it really did not help much. After my next maintenance dose, within 48 hours I again had excruciating joint pain and my doctor suggested Nopraxam (NSAID) which was not the best idea given my previous blood loss due to Ibuprofen (NSAID).
My results from a Prometheus blood test proved, that although my Remicade trough was zero, I had built-up antibodies of approximately twelve (12.0). My doctor then suggested we double the dose to 800mg every four (4) weeks - which I tried for two (2) cycles before slamming on the brakes. In short, it gave me no relief and I believe it was clearly the Remicade, at this point, causing the excruciating joint pain. For when time would lapse after my maintenance dose - I began to feel better. Or in other words, when my trough (Remicade almost out of my system) was low I felt significantly better. My doctor wanted to continue with the Remicade and I said NO!
In closing, I suggest that you and your daughter keep a detailed log of everything - from food consumed to when the pain emerges, etc, etc. In addition, ask about supplementing your daughter's Remicade with 50mg of Imuran - for it has been studied that Imuran can help reduce your bodies ability to build-up antibodies aganinst TNF blockers.
I understand that it is only when your quality of life and pain is at excruciating levels do we decide to aggressively treat our disease. For me, the building of my antibodies could have been because I went 9 weeks after my succesful Remicade treatments until I received my next maintenance dose. Unfortunately I will never really know. I have now begun Humira - and the jury is still out.
How bad is your daughter's joint pain on a scale between 1 - 10? Also, has she had any other pain other joints, etc.
My thoughts and prayers are with you both.
It worked great for a while.My GI switched me from every 8 weeks to every 4, but by that time I was only getting a few days of relief and it just wasn't worth staying on. My last hope is Cimzia but the doctor has little hope for me and cimzia since I have failed Humira too.What are you supposed to do?It's worth a try, at least, right?
