Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Possible HUMIRA caused Vasculitis/strokesymptoms

Hello all, I have been taking HUMIRA (and before that Enbrel & Remicade) for several years with great effect on my AS symptoms, but was taken off of it in early January after being hospitalized with stroke-like symptoms. An MRI revealed brain lesions, and when I left the hospital MS was suspected. A subsequent spinal tap and serum test revealed Ogliclonal Bands in BOTH serum & CSF which made MS less likely and now the Neuro is leaning toward systemic (CNS?) Vasculitis, but DX is difficult due to the depth of the lesion making biopsy less likely to be done. I have also had anemia showing in blood tests, and had been referred to a Nephrologist Hematologist, but since being taken off of HUMIRA this has improved so it may have been a side effect..... Recent increased Neuro symptoms lessen the likelihood of stroke as well (increased balance, difficulty walking, dizziness & blurred vision during hot flashes) I was put on a course of Dexamethasone which did help to knock back the new Neuro symptoms as well as my increasing joint pain fom being off AS meds for more than 4 months, but the Neuro problems (including persistent numbness in leafy hand, mental fog, fatigue & difficulty walking) have not lessened. I have had uncontrolled hypertension even with 3 different BP meds for a few years as well.
Bottom line is my Neuro has consulted with my Rheumatologist & thinks that treating the underlying autoimmune disorder can address both conditions, but my Rhuemy has yet to devise a new plan of attack & I feel like I'm just blowing in the wind here untreated. I am self-employed and now can only work a couple hours a day & as a result income has dropped dramatically, I tried to apply for 'temporary disability' but was imformed that my only option is to apply for permanent disability - problem is I still don't have any idea if my condition will improve or be permanent! It's a catch 22 -the medical bills are piling up, but the ability to pay them is decreasing.

Does any of this ring a bell?

- David

David,

Hello. I would look into infection. Perhaps roadback.org is a good place to research. I'm not sure what part of the world you are in, but have you ruled out lyme?

So sorry to hear about your condtion. I'll say a prayer for you, I hope you get some help asap, it sounds like such a burden. Try the no starch diet if you are able, it reduces my pain greatly when I stick to it. Hope you feel better soon, take care!

Thanks or mentioning Lyme - I've got several Dr.s looking into this from different angles, but it's worth asking if it's been ruled out.

- D

Thank you - it's been tough being off of HUMIRA for so long - its hard to tell where the AS ends & the Neuro problems begin. Getting IV infusion tommorrow to get me to my next Rheumy appt on Tuesday.
Take Care.
- D