I was diagnosed a little over two years ago with GCA (Giant Cell Arteritis) and polymyalgia. Down to 1 mg of Prednisone/day, started at 60 mg. Anyone else have this combination?
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I had PMR for about 1 1/2 years. I hated the Prednisone and marvel at your ability to go from 60 mg. to 1 mg. I do not think I would have been able to take 60mg. I am so sorry for you and your journey. My PCP said there was the possibility of getting GCA. So, I kept taking the Prednisone. I have learned something from your post. I did not know one could have both PMR and GCA at the same time. I thought PMR would turn into GCA. I am pondering my current situation because I feel like the PMR might be coming back. I hesitate to tell my PCP because I do not want the Prednisone. You probably had all the side effects that I had. You have my best wishes as you face these diseases. @joybringer1
@dar9216, You will notice that we changed the title of the discussion to better describe what it's about and bring in members who have both conditions. I have PMR but it is currently in remission. My doctor was concerned and checked me for GCA both times that my PMR was active. While we wait for other members to respond, here is some information I found.
"Approximately 50% of patients with giant-cell arteritis present with polymyalgia rheumatica before, at the time of, or after the diagnosis of vasculitis. Symptoms of …" – Giant-Cell Arteritis and Polymyalgia Rheumatica: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4277693/
That's great news that you are currently down to 1 mg of prednisone daily. It took me about 3 years to get to that point with my PMR when it first appeared on my radar. 😊 Have you made any other lifestyle or diet changes that have helped you get to this point?
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I lost sight in one eye from GCA in May 2020. I was immediately put on 60mg prednisone and now am in remission. I was not officially diagnosed with PMR but have had symptoms for years. Presently I am at 10mg prednisone and they say I'll need it for the rest of my life. I have some side effects but if it saves my other eye and keeps me on my feet, I'll deal with it.
I was diagnosed last August after a biopsy. I was put on 60 mg. of prednisone then and am down to 12.5 mg. and will change in 2 weeks to 10mg. I have had alot of side effects over the course so far but if I can successfully get down to monthly set levels of prednisone, some symptoms should start to diminish. I was told the "Moon face" and other swelling areas should start to lessen at around 5 mg. I have good days & bad days and will be on prednisone until Nov/Dec of this year. It does seem that there is a similar regime to get many of us to the end of taking prednisone…Hang in there…it does help to know we are not alone…
Yes, your "moon face"( I called mine "chipmunk cheeks"), swollen feet, weight gain, etc. etc. will diminish as you lower your dosage. I don't even have to mention all the other side effects because you know them. Prednisone can be awful, but it does help many medical issues. I suppose we could label it a necessary evil that brings a good outcome to many issues. You began at a much higher dosage than me, but you are surely making progress. Best wishes, @joybringer1
I’m in the same boat. Started with PMR, I think, then had the GCA symptoms but no diagnosis. I went for a few months before my Gen practice MD ran tests and found abnormalities in my blood work up but not definite PMR, decided to put me on 15 mg Prednisone and within 24 hours I was feeling somewhat normal. As I was tapering ( now know I went too fast) a couple of months later I got the head pain, jaw stiffness, and visual distortions. My doc put me immediately back to 15. Symptoms disappeared immediately. She didn’t bother to get a biopsy ( covid related) and said my symptoms were enough to treat it as GCA. So, I am quite concerned about the GCA, more than the PMR. I’m slowly tapering, and I mean snail pace. 10 mg now and only going down .5 /3-4 weeks. I too hate the prednisone but feel I have no other options.
was one of your symptoms fatigue
Yes fatigue has been a huge issue. I still cannot do what I used to but walk 2-4 mi / day thank goodness. I also have nerve pain and muscle cramping and spasms in the oddest muscle groups . Anyone else have that? Such as my abdomen, or inner thighs. Not your usual calf or toe cramps. Before diagnosis ( of PMR) I could barely ambulate in the mornings til 2 pm or so. And I lost 10 lbs, unheard of for me. Of course that has all returned with the prednisone.
I am okay with some pain when I lower my dosage of Prednisone, rather than no pain with the higher dose. But does this mean more risk of developing GCA? PMR is bad enough but GCA sounds much worse.
Hello @norieaugustine, Welcome to Connect. I have PMR which is currently in remission but when it was active my primary care doctor along with my rheumatologist would frequently ask me if I had any pain in my scalp or temple areas which can be an indication of giant cell arteritis (GCA). I also lived with some pain as I was tapering off of prednisone for both occurrences I had with PMR. My rheumatologist had me keep a daily pain log along with the prednisone dosage I was taking for that day which was helpful when I was tapering off of prednisone. Here's some information on GCA that might explain it a little better.
Giant Cell Arteritis – Fast Facts: https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Giant-Cell-Arteritis
You also may want to read through the posts in these discussion to see what other members have shared:
— PMR initial diagnosis: Can there be an underlying disease?: https://connect.mayoclinic.org/discussion/pmr-initial-diagnosis-1/
— GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica): https://connect.mayoclinic.org/discussion/giant-cell-arteritis-20c716/
Can you share a little more about your PMR diagnosis and how long you have been on prednisone?
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