Recently diagnosed

Hi Everyone,
I'm so glad to find this group!! After going through last winter wondering what I was allergic to with ongoing sniffles, a right swollen hand, and excruciating joint pain all over, I called an ambulance to go to the hospital ER late May with the arrival of red spots all over my lower legs and feet. It was then that I was finally diagnosed! My sinuses were infected, nose inflammation, joint pain, and kidneys inflamed. I was on Cytoxen for several months along with prednisone, my hemoglobin and energy continued to fall and this didn't settle the inflammation, going by urine tests, CRP levels, hgb. I then took IV Rotuxin twice which settled things down and put this into remission. However, now that I am completely off the prednisone, I feel pain in my joints again. I have an appointment with my doctor in a few weeks. This makes me question if I'm truly in remission. I've been taking these "successes" all in strides, dealing with this day by day, and trying to come to grips with what this disease actually means to me as far as quality of life. I want to be in remission, but part of me is hoping there is another treatment I'm going to get to work better because of painful joints. This is how it all started concurrently with the rhinitis, which got progressively worse that I needed help to stand and to get out of bed, or to get pain pills from the bottle to relieve pain. I'm not currently taking anything. My specialist was going to put me on methotrexate but we're waiting insurance approval for every 6 month rituxan intravenous. I am 52, had no signs of arthritis prior to this, and athletic. Is this me now? Sore painful joints to contend with?
Thanks folks!

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Even when doctors consider you in remission, residual symptoms can still cause you discomfort. Many people find they have to stay on pred and and some other drug to suppress immune system to be able to feel well enough to function like they wish. I have to sometimes increase my maintenance meds (AZA and pred) to handle increases in my residual symptoms of GPA but my doctors still consider me in remission as long as I don't need a major new drug treatment like RTX.

Consult with a doctor with lot of experience in treating GPA (one of the recognized experts is usually best choice if possible) to see what else can be done to improve your comfort level. Most of the time some tweaking can improve things and help you feel better.

@Don2000

I’ll second Drz’s thought about consulting with a vasculitis specialist.

For me, roaming joint pain and the purpura rash on my legs are indicators of a flare.

Many of us have been on prednisone for years. I was on 5 mg/day for several years. That was the easiest way to keep the disease under control along with an annual dose of 1000 mg of rituximab. My final taper was at -0.5 mg/month. I’ve been off pred since June 2018 except for a 4-week blast this past summer when I had a stress-induced flare.

Good luck and let us know how you’re progressing.

Thanks to you both. I'm in Nova Scotia Canada. We see who our family doctor can get us in to see. My specialist is a rheumatologist. As far as my family doctor, I am her first case. I get scheduled in to see rheumatologist every 2 months. I really dont believe we have a specialist in vasculitis. To be honest, I havent asked my rheumatologist if I'm his only patient he's ever treated with this. I do a lot of searching for information and really try to advocate for myself. Strange thing is that when I was tapering off the prednisone from 7.5mg to 5mg, the specialist who called me at home weekly at that time, said go back up to 7.5mg for another 2 weeks. I then slowly went down again and came off it, feeling some hints of discomfort below the 5mg. Off it completely for about a month and told specialist and asked if the joint pain was from damage when my disease was acute. He said it doesnt work that way. Ok, here I am. I feel little twinges in my toes, my ankles, knees are stiff and sore. It seems the pain in my hips left me last week. This makes stairs really difficult. However, if I keep on my feet and keep walking, the pain goes. I can get out and go for a walk or the gym treadmill. Is this because my joints are getting more circulation with the movement? Is this how others joint pain works, goes away with use in the beginning?
Thanks!

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