Remicade and spondyloarthropathy

[jonique]

Hi Everyone,

I have been on Remicade since Dec 16, 2014 and have had the three loading doses. The GI stuff is much improved, however the spondyloarthropathy seems to be lagging behind. For those who also have spondyloarthropathy, did it take a while for the remicade to work on it? in particular, the SI joints.

I am scheduled for my 4th infusion on March 19. If by the time i get my 5th infusion, the SI joints are still bothering me, I will be switching to Simponi.

For now, i have to supplement with Celebrex with some help but it seems to be causing my blood pressure to be high and I have major fluid retention.

Appreciate hearing about your experiences.

 

[Clash]

My son has CD and Juvenile Splondyloarthropathy(JSpA). Remicade alone didn't stop the pain in his SI joints. We had to tweak schedule dosage and add meds. What finally brought him relief was high dose remicade (12mg/kg) every 6 weeks along with methotrexate injections 20mg each week. He wasn't allowed celebrex since it can be bad with IBD. Also he had to do physical therapy 30 minutes 4 days a week(swimming) which helped with range of motion.

I'm going to tag maya142 as both of her children have experience with spondyloaryhropathy.

 

[Maya142]

Both my daughters were diagnosed with Juvenile Spondyloarthropathy that eventually progressed to Ankylosing Spondylitis. The older one is doing well on Humira and MTX, and the younger one (who also has IBD) is doing not so well on Remicade and Imuran. In their case, we have found that they don't respond to Anti-TNFs by themselves -- they respond to Anti-TNFs+ an immunomodulator (like MTX, Imuran, Arava).

When my younger daughter was on just Remicade, it didn't work at all for her AS. The second time, when we added MTX to Remicade it worked within 4 infusions. She was on 10mg/kg of Remicade at that time and 15mg of MTX. Now, she's on high-dose Remicade which is being studied by pediatric rheumatologists - doses up to 20mg/kg. I think Remicade has stopped working for her, even with Imuran. We will probably try Simponi (and stay with Imuran) next.

Their response to Immunomodulators is somewhat unusual - most adult rheumatologists will say that MTX does not work for spinal symptoms, but for whatever reason it worked for both my daughters. Most pediatric rheumatologists do use MTX in conjunction with Anti-TNFs quite frequently though.

Things that might help while you're waiting are heat, ice and a TENS unit. My younger daughter takes Tramadol for pain relief. She is also on an NSAID despite her IBD because her rheumatologist and GI decided that her AS was so much worse than the IBD that it was worth keeping her on NSAIDs. It took a lot of trial and error to find one that worked and didn't upset her stomach - for her that's Mobic.

Good luck! I hope Remicade kicks in!

 

[jonique]

Thanks Maya142 and Clash I cannot tolerate MTX. My rheum is looking at Arava but not sure if our provincial plan will cover it for IBD-related arthritis. I'm waiting to hear from her. She is concerned about it though as it causes diarrhea.

 

[Maya142]

My younger daughter actually tolerated Arava for a while, and it worked like magic with Humira. Eventually though, it caused diarrhea and fatigue and stomach pain and she was taken off it. Once she stopped it, the Humira stopped working.

We have thought about her trying Arava again at a lower dose - she's very small (89lbs) and was put on the adult dose.

We are in the US and had no trouble getting insurance to cover Arava, but I realize it will be different for you. It is mostly used for RA here.
The other thing she tried was Sulfasalazine but that didn't do anything at all. No side effects at all though.

 

[Pcoon]

My on with CD was just dx with ankylosing spondylitis and has been on Remicade for 2.5 years and done well until this last infusion. It healed 4 large fistulas and he had no side effects until now where it may be that he had serum sickness. I
I know very little about AS and and the recommended treatments. I am greatly concerned bc his GI specialist is thinking of switching him off the Remicade and going to Humira.It is a bit overwhelming to me tonight.

 

[Maya142]

Check out Spondylitis.org - they'll have a section on treatments.

The 5 approved TNF-inhibitors (Enbrel, Simponi, Cimzia, Humira and Remicade) ALL treat AS and are all FDA approved for AS. However, only Remicade, Humira and Cimzia work and are approved for Crohn's and Simponi is approved for Ulcerative Colitis, although it is used for Crohn's off-label sometimes. So if you have Crohn's and AS you really need one that treats both - Humira is a great option.

Enbrel is really the only one that does NOT treat IBD but treats AS.

Humira worked great for both my daughters and works for many people with AS and Crohn's. Good luck!