About

First Name
Barb

State/Province
WA

Posts (15)

Wed, Mar 13 11:31am · Adjusting to life with temporal arteritis in Stroke & Cerebrovascular Diseases

I somehow lost the post I had been writing you. Having a normal biopsy doesn’t prove that you don’t have GCA. I had been on prednisone for a few weeks before they scheduled my biopsy so mine also came back as normal . My rheumatologist said that the clearest sign that I had GCA was that within a a few days of being on prednisone I felt so much better. Hang in there and if you feel like the doctors aren’t listening make an appointment with another one. Having a good working relationship with your doctor can help you get through a lot of the ups and downs
Sorry if I posted twice on this. I just can’t find the first one

Sat, Mar 2 9:34pm · Adjusting to life with temporal arteritis in Stroke & Cerebrovascular Diseases

I have also had problems lowering the dose of prednisone. I have had so many problems that After I got to 15mg my doctor had me go down 1/2 mg a month. I made it down to 7 mg and again felt so horrible that I went back up to 12 with my doctors approval. I am now just at 11.5 mg and am back on the 1/2 mg a month reduction plan

Sat, Mar 2 12:01pm · Adjusting to life with temporal arteritis in Stroke & Cerebrovascular Diseases

I have not but my rheumatologist always asks if I have experienced jaw claudication since I have last seen him. He also checks to make sure my temples aren’t hardening or swollen. He says it’s a sign of relapse so maybe the 60mg isn’t controlling the GCA?? Once they put me on 60mg I felt so much better within 48 hours. Have you had anytime without symptoms? So sorry you are going through this.

Fri, Feb 22 12:06pm · Adjusting to life with temporal arteritis in Stroke & Cerebrovascular Diseases

I neglected to say that I have both PMR And Giant Cell Arteritis so the tender spots on your head sounded very familiar

Thu, Feb 21 11:46pm · Adjusting to life with temporal arteritis in Stroke & Cerebrovascular Diseases

@amptrooper I was diagnosed when I was 58 and was told I was too young by the doctor that did my biopsy but my rheumatologist said not everyone fits in a nice neat box. When high doses of steroids made me feel better than I had in years my doctor said that was more convincing than any other test that I had Giant cell arteritis. Please don’t get discouraged and be your own best advocate. If you have any specific questions please ask

Wed, Feb 13 11:52am · PMR and the new Shingles vaccine in Autoimmune Diseases

No, my doctor didn’t say that PMR caused the shingles. He said it was from my immune system being so low and my stress level being so high

Sat, Feb 9 9:43am · PMR and the new Shingles vaccine in Autoimmune Diseases

I have PMR and GCA and had a shingles outbreak since coming down with these conditions so my doctor recommended I have the Shingrix shot. I recently had the first of the two shot series. I am still on 12mg prednisone

Thu, Feb 7 5:02pm · PMR Heriditary? in Autoimmune Diseases

I hope your son is spared too. We always want the best for our children no matter how old they get. I will keep him in my thoughts and pray for a good outcome if that’s okay with you