Vasculitis
I was diagnosed 6 months ago with autoimmune vasculitis. I already had lupus. Now I’m finally diagnosed with anca vasculitis, retinal vasculitis, verovegal syndrome, APS, raynaurds syndrome, along side lupus.
They put me on methotrexate and Hydroxychloroquine for six weeks with the intention of starting me on Rituximab and finally tapering me all the way off of prednisone during this process.
I’ve followed along with this group and many others for a long time now, and I guess I’m a bit worried.
My rheumatologist told me that remission is the goal, however he can’t fix what is already broken. Our goal right now is to keep me at my baseline, and make sure I do not get any worse.
This disease took my ability to walk normal (I’m in a walker with permanent muscle and nerve damage) They scored me at a 2/5 muscle weakness, my eyesite is almost gone and I’m at extremely high risk for going blind (the reason why we are switching to infusions in 6 weeks and tapering prednisone) because my retinal doctor said I’d go blind quickly without proper treatment, and that prednisone is helping now but can contribute to my blindness if I am left on it too long), I have horrible neuropathy and am on pain management as well. My kidneys were leaking protein but my urine has been clear this last month, thank goodness. And I am now am considered permanently disabled. I’m 35 years old.
I have read so many posts of people on these same medications for years and years, with no sign of remission and just staying at their own personal baseline.
And I’ve read a lot of stories of people achieving remission but still being miserable because their baseline is like mine, and the damage that was already done is what they have to live with now. And lastly ive read a lot of stories of people achieving remission, just for the disease to show its nasty self again a year or so later.
I guess I’m having a hard time wrapping my head around it all. It sounds like the biggest hope I can have is my baseline now.
I can’t heal the damage in my legs or my eyes. But I can stop myself from being completely paralyzed and blind (which that I am thankful for) but my life will never the same again, I will never be the same again, and that is a lot to process.
I fought so hard to get diagnosed and now that I have it, I feel more depressed than before.
How to I accept that my baseline is my new way of life, and what if treatment doesn’t work at all?
There are just a lot of “what ifs” and I truly miss the girl I used to be