I was diagnosed with PMR and GCA at the same time when I was 54. PMR went away almost immediately after starting Pred but the GCA lingered. I was on 80mg a day for 8 months and then switched to Actemra. Took that until Nov 2021 when I was declared in remission and have been ever since.
Have you successfully stopped Actemra without a relapse? I took moderately high doses of prednisone for 13 years until Actemra was tried. I got off prednisone but I still do a monthly infusion of Actemra
I'm reminded that I still have a problem when I do my Actemra infusion. Otherwise I don't have any of the problems that were characteristic of long term prednisone use.
Have you successfully stopped Actemra without a relapse? I took moderately high doses of prednisone for 13 years until Actemra was tried. I got off prednisone but I still do a monthly infusion of Actemra
I'm reminded that I still have a problem when I do my Actemra infusion. Otherwise I don't have any of the problems that were characteristic of long term prednisone use.
I was 48 years old when diagnosed with PMR and a few months later with GCA. None of the doctors believed that it is possible in this age. Unfortunately it is...
I have the same problem. In the early 40s, I am now 78, I went to a rheumatologist told him my symptoms. I didn't know anything about PMR, but my symptoms were just like I read them out of a text book. Pain across my shoulder and hip girdle for no reason and fatigue. Without any blood tests he put me on 10 mg prednisone and within 6 hours I was a new man. My wife could tell the difference and I didn't even tell her what had happened. I tapered down to 0 mg prednisone (P) and all was fine for a year. Then the pain came back. We went through the same treatment many times over many years and the relapse returned sooner and sooner. I eventually went to 2 mg P daily for about 4 years and then 5 mg for a few years along with Aleve. Now I am going to a rheumatologies who thinks I never had PMR. He thinks I had spondylarthritis. I am on 200 mg of hydroxycholoquine and 4 mg P and no Aleve. I have had all sorts of problems with this dose like sleep problems, stiffness and lack of any anti-inflammatory properties. Would love to hear any comments.
I began having symptoms at 54. Of course I didn't know it at the time but it was PMR. Weeks went by numerous doctors couldn't pinpoint it. Then symptoms of GCA started. Still no diagnosis. I was sent to Infectious diseases. He gave me a physical and took more blood. It was at this point I decided to start my own investigation. I found a 50 something year old in the UK who had a blog. Everything he said pointed to my symptoms. It was around this time I started seeing double and had black dots in my vision. I also had severe depression. The next day I called the doctor and asked him if he had ever heard of giant cell arteritis. He laughed a little and said that was the first thing he thought of when he saw me, but you're way too young to have it. I asked if I could be tested for it and he said he would call me right back. After speaking to a rheumatologist he sent me to the drugstore to get prednisone and told me to take it right away. The rheumatologist told him that she thought that I had giant cell arthritis and I was in jeopardy of losing my eyesight. The next day I was taken in for a biopsy which confirmed what I had suspected. My PMR went away almost immediately but I had GCA for 4 years, with a relapse. I took my last shot of Actemra Nov 14, 2021. Yes, a day I'll never forget.
What was it about your last shot that you will never forget? Was it that you never needed it again or the you had side effects that you no longer have?
What was it about your last shot that you will never forget? Was it that you never needed it again or the you had side effects that you no longer have?
Yeah it was that hopefully it was my last shot for good. But my Rheum reminds me every time that I could go back at anytime. I have no lasting side effects (as far as I know)
I have the same problem. In the early 40s, I am now 78, I went to a rheumatologist told him my symptoms. I didn't know anything about PMR, but my symptoms were just like I read them out of a text book. Pain across my shoulder and hip girdle for no reason and fatigue. Without any blood tests he put me on 10 mg prednisone and within 6 hours I was a new man. My wife could tell the difference and I didn't even tell her what had happened. I tapered down to 0 mg prednisone (P) and all was fine for a year. Then the pain came back. We went through the same treatment many times over many years and the relapse returned sooner and sooner. I eventually went to 2 mg P daily for about 4 years and then 5 mg for a few years along with Aleve. Now I am going to a rheumatologies who thinks I never had PMR. He thinks I had spondylarthritis. I am on 200 mg of hydroxycholoquine and 4 mg P and no Aleve. I have had all sorts of problems with this dose like sleep problems, stiffness and lack of any anti-inflammatory properties. Would love to hear any comments.
I was 32 and male when I was diagnosed with reactive arthritis. Did your rheumatologist speculate on what type of spondyloarthritis you have?
When I had the onset of new and different symptoms at the age of 52, my rheumatologist was reluctant to diagnose PMR at first. I didn't know anything about PMR at the time but my symptoms seemed textbook too.
I asked my rheumatologist what happened to reactive arthritis because I was thinking my diagnosis was being changed.. My rheumatologist was sorry to inform me that I still had reactive arthritis. She said it was unfortunate but now it seemed like I had PMR in addition to reactive arthritis.
The problem with PMR and spondyloarthritis is that nothing is a specific finding that can be used to confirm either one. MRI is a useful diagnostic tool. Unfortunately, for our generation MRI wasn't used very often. A diagnosis was usually made based on the "preponderance of the evidence" which is greater than a 50% chance but that isn't definitive.
Connect
Connect
Like
Helpful
Hug
Have you successfully stopped Actemra without a relapse? I took moderately high doses of prednisone for 13 years until Actemra was tried. I got off prednisone but I still do a monthly infusion of Actemra
I'm reminded that I still have a problem when I do my Actemra infusion. Otherwise I don't have any of the problems that were characteristic of long term prednisone use.
-
Like -
Helpful -
Hug
1 ReactionYes, I am off everything right now. I did self injection Actemra for 4 years and finally my sed rate and C reactive protein fell.
I was 48 years old when diagnosed with PMR and a few months later with GCA. None of the doctors believed that it is possible in this age. Unfortunately it is...
-
Like -
Helpful -
Hug
3 ReactionsI have the same problem. In the early 40s, I am now 78, I went to a rheumatologist told him my symptoms. I didn't know anything about PMR, but my symptoms were just like I read them out of a text book. Pain across my shoulder and hip girdle for no reason and fatigue. Without any blood tests he put me on 10 mg prednisone and within 6 hours I was a new man. My wife could tell the difference and I didn't even tell her what had happened. I tapered down to 0 mg prednisone (P) and all was fine for a year. Then the pain came back. We went through the same treatment many times over many years and the relapse returned sooner and sooner. I eventually went to 2 mg P daily for about 4 years and then 5 mg for a few years along with Aleve. Now I am going to a rheumatologies who thinks I never had PMR. He thinks I had spondylarthritis. I am on 200 mg of hydroxycholoquine and 4 mg P and no Aleve. I have had all sorts of problems with this dose like sleep problems, stiffness and lack of any anti-inflammatory properties. Would love to hear any comments.
-
Like -
Helpful -
Hug
2 ReactionsWhat was it about your last shot that you will never forget? Was it that you never needed it again or the you had side effects that you no longer have?
Yeah it was that hopefully it was my last shot for good. But my Rheum reminds me every time that I could go back at anytime. I have no lasting side effects (as far as I know)
Being male and in your early 40's at the onset of symptoms is more consistent with spondyloarthritis.
https://spondylitis.org/about-spondylitis/overview-of-spondyloarthritis/?returnurl=/types-of-spondylitisI was 32 and male when I was diagnosed with reactive arthritis. Did your rheumatologist speculate on what type of spondyloarthritis you have?
When I had the onset of new and different symptoms at the age of 52, my rheumatologist was reluctant to diagnose PMR at first. I didn't know anything about PMR at the time but my symptoms seemed textbook too.
I asked my rheumatologist what happened to reactive arthritis because I was thinking my diagnosis was being changed.. My rheumatologist was sorry to inform me that I still had reactive arthritis. She said it was unfortunate but now it seemed like I had PMR in addition to reactive arthritis.
PMR and spondyloarthritis can coexist.
Any definitive tests (blood or radio graphic) to show that you have spondylarthritis?
Not really ... In the link that follows, scroll down to the subtitle "AXIAL AND PERIPHERAL SPONDYLOARTHRITIS DIAGNOSIS"
https://www.uptodate.com/contents/axial-spondyloarthritis-including-ankylosing-spondylitis-beyond-the-basics/print#:~:text=Ultimately%2C%20the%20diagnosis%20of%20axial,magnetic%20resonance%20imaging%20(MRI).The problem with PMR and spondyloarthritis is that nothing is a specific finding that can be used to confirm either one. MRI is a useful diagnostic tool. Unfortunately, for our generation MRI wasn't used very often. A diagnosis was usually made based on the "preponderance of the evidence" which is greater than a 50% chance but that isn't definitive.
E too just got diagnosed yesterday and I am 51 years old.
How have things been going for you
-
Like -
Helpful -
Hug
1 Reaction