Ankylosing Spondylitis in the Ankles

[kiltubrid]

I have had bad pain in my ankles for several months that my GP thought was plantar fasciitis. The stretching exercises for that didn't help so she sent me to the rheumatologist, and he pretty quickly diagnosed it as Ankylosing Spondylitis.

I know most people get this in their hips or back. Does anyone else here have it in their ankles? If so, what has been effective treatment? I'm already on Remicade for Crohn's and other joint pain, and that has helped me a lot, as have physical therapy exercises, but even with that course of treatment for the past 18 months, I've developed this new thing.

Right now I'm on prednisone and that helps but of course it's temporary. If anyone else has had experiences with Ankylosing Spondylitis, especially of the ankles, please share your stories. I have lived with Crohns since 1982, and so far this is the worst extra intestinal I've had to deal with.

 

[Maya142]

My husband and older daughter have AS and inflammation in their ankles (they also both have spine, SI joint and hip involvement). My husband has been on NSAIDs for years (he does not have Crohn's, just AS) and walked with a cane for a while, but eventually the ankle pain just went away (his ankle fused, but that is VERY rare!).

My older daughter is on Humira and methotrexate. The methotrexate really made a big difference to her, particularly to her peripheral joints. Physical therapy helped some. Once the Humira + MTX really kicked in though her ankles have been mostly fine. She needed Humira weekly plus 15mg of MTX (by injection) plus an NSAID to get her to a good place. She also used prednisone until her meds started working.

My younger daughter has AS and IBD but her ankles are just about the one joint that aren't involved. Everything else (spine, SI joints, hips, knees, fingers, heels, elbows, jaw) is involved. We are still working on getting the AS under control. She did have a period where the AS was under good control on Humira and MTX. She also did well on Remicade for a while but she needed a higher than normal dose and more frequent infusions - you could ask your doctor about that. I believe for AS most people have infusions at least every 6 weeks or sooner, whereas IBD patients can sometimes get to every 8 weeks. My daughter needed infusions every 4 weeks.

For her we use Medrol, a lot of heat and ice and a TENs unit for pain. She is also on Tramadol and an NSAID and has stronger painkillers if necessary. We have done a steroid shot into her knee before and that made a big difference - I wonder if that would be an option for your ankle? It provided relief within two days.

Orthotics (made just for her by a podiatrist) helped her heels a LOT. They actually helped so much that my husband got some made by the same doctor and his really helped his ankle.

You could also try an OTC ankle brace.

AS is the worst - I hope you feel better soon :ghug:

 

[Maya142]

You could also ask about switching to MTX - my younger daughter is currently on Imuran too and MTX worked MUCH better for her joints. She has trouble tolerating it, which is why we tried Imuran, but most people do ok with it.

 

[kiltubrid]

Thanks so much, Maya. The rheumatologist did mention something about methotrexate as a possibility if necessary. I got the cortisone shot in my knee last year (for osteoarthritis there) and it was a big help. But since I've been on prednisone, the knee pain has returned and has gotten pretty bad. It may be because I've been more active since my ankles are feeling better.

And, wow, it sounds like your family is dealing either more than their fair share of Ankylosing Spondylitis. Thanks for all the info!