Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group taken off biologic, help

Hi Winter,
I am sorry to hear about your pain. The following worked for me, greens and chicken . Try to eat salads, or anything green and chicken or turkey for a few days and see what happens. It really gave me some relief. Then I add foods in and see if I feel the same or worse. How much prednisone do you take daily? I still take a low dose too, I am trying to reduce but I have to do it slowly or the inflammation will just feed the inflammation , so its best to wean slowly.

I got accepted at Mayo Clinic and going there in a few weeks. The docs don’t know why I have neuropathy and tachycardia but they said it could be another autoimmune disease or it could have been triggered from being on Simponi. My doc said I should wait to start Cosentyx until I get back from Mayo Clinic. My AS is flaring and I have painful neuropathy so I have two battles to fight right now.

Thanks for pulling for me guys.

Shari

Winter, I have been on Cosentyx since June of this year. One month skip due to bronchitis. This stuff is miraculous! I couldn't do the anti-TNF after developing congestive heart failure on Enbrel and then Humira. Cosentyx is an IL-17a inhibitor, so it doesn't have the same side effect as the TNF inhibitors. Prior to Cosentyx, I was attempting to manage with MTX and pain meds, and could "function". With Cosentyx and MTX, I feel like I'm living. Good luck with the Mayo Clinic, let us know how things are and if you have any questions about Cosentyx!

Snipe-Chief- so glad you are doing well on Cosentyx. I am not surprised you got bronchitis after starting the Cosentyx but glad you kicked it ok and that you are back to living life again. Sorry you ended up CHF due to the TNF biologics. Is your CHF getting better off the TNF biologic? The docs are not sure exactly how damaged I am from Simponi but my heart is stable now on Corlanor and I am hoping Mayo visit will help me with the neuropathy symptoms. I will keep you posted and thanks for sharing your story.

I am back from Mayo Clinic. I did get more drug options in terms of biologics to try than what my current rheumatologist is offering, including going back on the one I was taken off of. They didn’t figure out the cause of the heart tachycardia but assured me I am on the proper medication to control the tachycardia. Also, the Mayo neurologist was more thorough than neurologist at home and is recommending I have an MRI done so I am glad I went. The doctors spend over an hour with you and take time reviewing medical records. I wanted others to know it was a positive experience in case someone else decides to go to Mayo Clinic.

Shari

Hi Winter, good to hear you’re getting back on a biologic and that Mayo was helpful. I’ve been following your story with interest - I have a POTS dx as well and I’m always curious about the POTS/AS/small fiber neuropathy combination. I haven’t been as active on the kickas site as I’ve been really battling the POTS thing in the past few years.

Megan

Hi Megan - sorry you have POTs too. I was diagnosed with borderline POTs. I most likely have some small fiber nerve damage but there is nothing they can do for it except for nerve medications to lessen the pain and antidepressants. I am interested in knowing how you treat your POTs and AS. Do you have the small fiber damage too? I feel like mine was triggered by my biologic Simponi so now that I am off it, I think things are improving a little bit in terms of the POTs symptoms but still struggling with numbness and tingling and tachycardia. Mayo wants me to get MRI done at home. As of yesterday, I started Cosentyx and I think it is helping a little bit so I am hopeful. Would love to hear more of your story. Feel free to send me a private message.

Shari