Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

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Tendonitis and Orencia??

MarleneJ
MarleneJ

Since I went on Orencia, I have been getting bad tendinitis especially in my hands.  I don't think I have ever had it before, except maybe back in the beginning when I was so flared and had no diagnosis.  Or maybe not then.



When I was on Xeljanz, I had my first and last ankle flares.  I had never had it in 18 years with this disease.  It stopped a few days after I went of of it.  I know it was the biologic, maybe not causing it, but allowing it?  So now I am wondering if perhaps the Orencia is the cause of this tendinitis in some way.  Has anyone ever experienced this with Orencia?  Or, has anyone ever have the experience of gaining a new symptom on a drug, which left when the medication was discontinued?  I am looking for reasons to go off Orencia. Because it is not doing the job for me. It is the last possible biologic, except to go back to Kineret, if my doctor can find out how to apply for it in this province.  Ok, that is my goal - go back to Kineret, which worked so well with a DMARD. 


Please excuse typos. There seems to be no way to put the cursor down on my IPad, and correct the obvious spelling and grammatical mistakes. How frustrating!!! 

MarleneJ
MarleneJ
Bumping this up to complain about the system. You can only see one post at a time, and what, maybe 5 posts on the first page?? So anything that isn't immediately seen isn't seen at all. I don't know how many times I have looked through the home page on the old DS, and seen a post that had zero replies about 10-12 posts down, So I would always answer it to bump it up. Even if I didn't really know about the topic, just to encourage whoever wrote it. And 99% of the time, others would see it and reply, too!

This just sucks! And yes, this topic may not be relevant to most people, but it was gone off the main page in a few hours. I'm in a lot of pain due to so many severe deformities, some RA and some just damage. I need a support group that is set up to support people, not to be a social media site. Even FB you can just keep scrolling down, unlike here. I'm going to try and copy and paste this on the complaint site. But I am not expecting any changes, sadly!
WarriorGal
WarriorGal
Tendonitis is reported only by a few people who take Orencia. We study 5,708 people who have side effects while taking Orencia from FDA and social media. Among them, 2 have Tendonitis. Find out below who they are, when they have Tendonitis and more. http://www.ehealthme.com/ds/orencia/tendonitis/

Q: If you want off Orencia and to go back on Kineret - why not just tell your doctor??

https://treato.com/Orencia,Tendonitis/?a=s
MarleneJ
MarleneJ
Thanks for that info. I guess I would be the third in that group of 5709 people! As far as going back to Kineret, our provincial insurance plan makes it difficult. They technically don't allow you to go back to an old drug you have failed. Although technically, I didn't fail Kineret but the DMARDS - mthx and Sulfasalazine. Then, the drug is not even listed on the form for approval. But the other big issue, is that if I go to Kineret and it doesn't work at all, for some reason (we all know that these things happen!) then I would not be allowed to come back to Orencia, which is maybe working 75%. So that would be better than nothing. Plus, I have tried all the biologics that I am able to take. So if Kineret didn't work, there would be nothing left to try.

So my rheumatologist wants me to stay on it longer. But my hands are so swollen, I still have flares in them, plus the tendonitis. I have all kinds of new deformities this year, and I am now wearing all kinds of splints and things to keep them from getting worse. We will see if they work.

So, do I want to force my rheumatologist to change me to Kineret, and lose 75% coverage and maybe get no help? It is a real dilemma.
jteach
jteach
If it were me, I would stick with 75% coverage. That seems like a decent % and since you only have one more to try...
Yep, like you, not crazy about the new site. Pictures and ads seem more important than support!
Hang in there.
Juls
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