Xeljanz for IBD arthritis?

[Essieluv]

I know that Xeljanz is used for Rheumatoid Arthritis, and is even in trials for Crohn's. However, has anyone used it for (or heard of it being used for) autoimmune IBD arthritis? I'm just curious.

 

[Maya142]

I believe it's in trials for psoriatic arthritis and ankylosing spondylitis (and I suppose the other spondyloarthropathies?) and for Crohn's itself but I don't know any more.

 

[Essieluv]

That's what I had heard, too.

Since IBD arthritis is very similar to RA (i.e., both autoimmune, treated with similar medications), I was curious to hear if Xeljanz had been used to treat it.

 

[Maya142]

The kind of arthritis associated with IBD is currently best treated with methotrexate or biologics like Humira, Remicade and Cimzia. There are many more options (biologics) for RA that don't seem to work for this particular kind of arthritis or Crohn's (Orenica, Actemra, Rituxan to name a few).
My daughters are in a study in Houston and we were told that Stelara is likely to be the next drug to help both Crohn's and this kind of arthritis. The side effect profile of Xeljanz worried me because it's been denied approval twice in Europe because of safety concerns.

 

[Maya142]

CCFA has a good resource that explains the different types of arthritis: http://www.ccfa.org/assets/pdfs/arthritiscomplications.pdf

 

[Essieluv]

I was worried as well when I saw the side effects of Xeljanz, especially since it is in the process of becoming a new IBD treatment. Not very pleasant, although most of the "big guns" have harsh side effects.

 

[Maya142]

True, of course, but this one scared me most!

 

[Essieluv]

Yes, I agree. It does seem a little petrifying, to put it nicely. I can certainly understand why people take it, but I do NOT like the potential side effects.

 

[Maya142]

Yes, I would ask about Stelara before trying Xeljanz. Or I don't know if you've tried methotrexate, but it really helped both my girls.

 

[Essieluv]

My Rheumy and I have been discussing methotrexate. We are both hoping it will help my arthritis, and residual Crohn's symptoms that are hanging around. I have actually been looking at metho for a while, and am very happy to be starting it soon. It makes me hopeful that things will start to look up.

 

[Essieluv]

How are your daughters managing now? I think you mentioned that Humira wasn't working out for one of them, if my memory is correct?

 

[Maya142]

Both girls are back on Humira. The older one is on Humira and Methotrexate and is doing great and feels pretty much normal! She was told she would have to have hip replacements in a couple of years, but she's doing so well that her rheumatologist says it is unlikely now that she'll have to have them replaced soon.
The younger one is on Humira and Sulfaslazine and is just turning the corner and beginning to feel good. Her last scope and pillcam looked great!
Both of them have been on many biologics - Enbrel, Humira, Remicade and Simponi so I'm very grateful that things are finally settling down a bit.

 

[Essieluv]

That's so good to hear!! Yay! Biologics are not always fun, but if they get the job done they are nice. Just curious, do they use the pen or the syringe? When I was on Humira I used the pen and hated it; I always wondered if the syringe would have made my Humira experience better. I didn't mind the Cimzia syringe at all...

 

[Maya142]

You know they both use the pen, but I also thought the syringe might be better. The pen is easier to use though.
One mom on the parent's forum actually uses the syringe and injects lidocaine into it to make the shot less painful. She says it helped her son a lot. Humira is by far the most painful one - both Enbrel and Simponi don't hurt half as much!

 

[Essieluv]

Humira is awful! I really don't know how doctors expect us to be happy with such a painful shot. I had read about injecting lidocaine with Humira, I found that pleasantly surprising. I used emla cream, and it helped a little.

 

[Farmwife]

Hi I just wanted to add that my five year old also has JRA and has started mtx shots and has had no side effect what so ever. She just started humira and only has tiredness so far.

I hope you can find something that works. Just watch Grace in pain is hard,I can only image what it must be like for you.

Hugs from Farmwife and farm girl

 

[Lady Organic]

My Rheumy and I have been discussing methotrexate. We are both hoping it will help my arthritis, and residual Crohn's symptoms that are hanging around. I have actually been looking at metho for a while, and am very happy to be starting it soon. It makes me hopeful that things will start to look up.

Hi, have you tried sulphasalazine? I wish I had started sulpha which is one of the first line treatments in arthritis, just like for crohns and UC. instead, I was told to start methotrexate and stop the other medication I was taking before, purinethol. Im still on methotrexate injection but its not helping the chronic arthritis I have. Im currently trying different natural approaches before I use my sulpha prescription on top of the methotrexate.

 

[Essieluv]

Thanks Farmwife!

@Lady Organic, I have been on sulfasalazine. I was only on it for a week, though, because I broke out in hives all over my legs. I wish that I could have continued taking it because I was very hopeful that it would help. Ah well, what can you do...I should know by now that I can't make my body do what I want, lol.

 

[Lady Organic]

oh, sorry to ear about the bad sulpha experience! I feel positive methotrexate could help you. your arthritis appears to be a different kind than mine since you still have intestinal inflammation going on. Im in complete remission on that part. It would be different mechanisms and genes related to the different types of IBD arthritis. Methotrexate is powerful ingredient immuno-supressant. make sure you get the injections. (easy to do, nothing to worry about) the pills have more side effects, including gastro-intestinal and are not recommended for IBD.
let us know,
:smile: