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09-27-2018, 01:20 AM
Hi everyone my name is Sandy. This is the first time I am posting my personal story and journey with GPA. Last year in May I started having face pain that I kept attributing to a Sinus Infection, and had gone to three different doctors and each of them told me they see no sign of an infection but went ahead and gave me an antibiotic, the last two also gave me the steroid pack. By end of June I was in awful pain and was not getting any sleep, I was finally told by my ENT that this was neurological and needed to go see a Neurologist. Finally was able to get into one late June and they put me on Gabapentin. I also got in with my PCP and he sent me in for blood work. Before I could get back with my PCP on my blood work I started having pain while breathing, I could tell it was with my lungs. Ran to my PCP and he told me he thought I had GPA and needed to go the emergency room and have a CT done on my lungs. I spent 25 days in the hospital with getting a confirmed diagnose after a lung biopsy was done on the infection in my lung. I also had several other infections in my body and was put on Vancomycin for several weeks. This in turn this caused damage to my Kidneys. They started me on Rituxan right away in the hospital. While I was in the hospital I started getting numbness in my fingers, toes, and left foot. I also lost 30% of my hearing in both ears, and now wear hearing aids. And of course I was put on 60 mg of Prednisone, along with many other drugs for blood pressure, and supplements. Before this I was not on any maintenance drugs and was pretty healthy. I live in the Orlando, Florida area and was very fortunate to get in with one of the best Rheumatologist in the area, and she has had patients with GPA.
In the fall they started lowering my Prednisone and eventually put me in Imuran 150 mg. I did another course of Rituxan in March this year. My Neuropathy has gotten worse in my left foot/lower leg, and now on 150 mg of Lyrica 2xd. I have also started joint pain which my Rheumatologist says in not arthritis so it has to be neurological. All my other organs that were bothering me last year are doing ok, my Kidneys are maintaining, my lungs have improved, and my heart is strong. My Rheumatologist is trying to decide to do Cytoxan for my next infusion instead of Rituxan, she is afraid the Rituxan is not getting to my nerves. So right now they are setting me up for a nerve biopsy to see if GPA disease is still in my nerves. If it is then she will do the Cytoxan infusion instead of Rituxan.
The Cytoxan scares me because of the side effects. Has anyone here had a nerve biopsy? As well as going through Cytoxan and what effects did you have?
Sandy
In the fall they started lowering my Prednisone and eventually put me in Imuran 150 mg. I did another course of Rituxan in March this year. My Neuropathy has gotten worse in my left foot/lower leg, and now on 150 mg of Lyrica 2xd. I have also started joint pain which my Rheumatologist says in not arthritis so it has to be neurological. All my other organs that were bothering me last year are doing ok, my Kidneys are maintaining, my lungs have improved, and my heart is strong. My Rheumatologist is trying to decide to do Cytoxan for my next infusion instead of Rituxan, she is afraid the Rituxan is not getting to my nerves. So right now they are setting me up for a nerve biopsy to see if GPA disease is still in my nerves. If it is then she will do the Cytoxan infusion instead of Rituxan.
The Cytoxan scares me because of the side effects. Has anyone here had a nerve biopsy? As well as going through Cytoxan and what effects did you have?
Sandy