Everyone is so supportive in this group! Thanks!
I admit to being jealous every time I read "I am in remission". I myself, am NOT in remission.
Meds: Prednisone 5 mg daily (20 mg in Aug 2021 through March 2022 - almost no taper just reduced to 5 due to side effects) Methotrexate 20 mg since Dec 2021; Rituximab infusions - 2 - June 2022
No improvement in labs since August 2021. NO IMPROVEMENT NO REMISSION with 1 year of treatment.
Seeing rheumatologist Monday. I am beyond discouraged. The ANCA vasculitis does not respond to treatment. But, I do have lovely side effects from said treatment. More importantly, the disease is wreaking havoc. I am at a loss as to what to try. The pain level reached a 12 two weeks ago. I can barely walk to the bathroom, it feels like little rocks are in my legs, calves, thighs, knees, hip, elbows, wrists. I remember 2 months ago I walked 4.5 miles every day. Now it is agony just sitting or laying down, forget about walking! The lowest the pain has gotten is a 7. I am afraid that if I go for a walk and collapse, I'll end up at a hospital full of doctors that have NO IDEA what they are doing. I am terrified of this thought and stay isolated.
This is NOT the same pain as the periphery neuropathy (controlled by gabapentin 400 3x day).
Note: ultrasound last week - kidneys appear good
Yes, I have had second and third opinions, biopsies, MRIs, etc. It is multiple types of ANCA vasculitis, symptoms: skin, ear, lungs, cardiac, nasal crust, digestive, eye, neuropathy, Raynaud's, etc..
Bonus to ANCA, I have Schamberg's Disease: I have 100s of blood capillaries that spontaneously burst on my arms, legs, and torso and blood leaks under the skin in pools the size of an American nickel. They are BRIGHT RED and there are a few new ones daily. People comment on them. Several have now burst on my neck. The hematological oncologist said there is nothing they can do about them and if I can achieve remission with the ANCA the bursting sports may or may not slow down. The spots may or may not get reabsorbed in 3 to 5 years but every day there are more. It is horrifying to me, grotesque. I feel like I am dissolving before my eyes as the blood spreads under my skin.
Anyone have a different idea? Anyone try medical marijuana for the pain? I am getting desperate.
Thank you for reading this mess. I really didn't want to ruin anyone's day. Sorry.