GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

Posted by dar9216 @dar9216, Jan 7 12:34pm

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?

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

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@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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@joybringer1

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

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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.

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@johnbishop

@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 have PMR which currently is in remission. I started on 60 mg of prednisone and I’m currently on 7 mg of prednisone. I live in a small town that does not have a rheumatologist and I’m wondering if it is safe to get the Covid 19 vaccine while taking prednisone.

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@cavachon

I have PMR which currently is in remission. I started on 60 mg of prednisone and I’m currently on 7 mg of prednisone. I live in a small town that does not have a rheumatologist and I’m wondering if it is safe to get the Covid 19 vaccine while taking prednisone.

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Hello @cavachon, Welcome to Connect. It's good to hear your PMR is in remission. Here is some information I found that may be helpful but I would still ask a doctor before getting the COVID vaccine.

"Dec 18, 2020 — There is one important exception: People taking corticosteroids (e.g. prednisone) at doses of 10 mg or higher have an increased risk of being hospitalized with any infection, including a COVID-19 infection." –
COVID 19 FAQS Medication Treatment and Vaccines – Arthritis.Org: https://www.arthritis.org/health-wellness/about-arthritis/related-conditions/other-diseases/covid-19-faqs-medication-treatment-and-vaccines

Have you talked with your doctor about taking the vaccine?

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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…

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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

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@cavachon

I have PMR which currently is in remission. I started on 60 mg of prednisone and I’m currently on 7 mg of prednisone. I live in a small town that does not have a rheumatologist and I’m wondering if it is safe to get the Covid 19 vaccine while taking prednisone.

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@cavachon It’s great that your PMR is in remission! But, you’re still on prednisone and worry about the safety of the vaccine. I’ve talked with my doctors (a neurologist and an oncologist) and they have been fine with my getting the vaccine. I’m currently on 20mgs of prednisone and a monthly dose of a chemotherapy drug. I had the vaccine on Jan 7 and will see my doctor tomorrow.
I agree with @johnbishop, though, you should ask your doctors before getting the vaccine. Let us know what they think!

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@cavachon

I have PMR which currently is in remission. I started on 60 mg of prednisone and I’m currently on 7 mg of prednisone. I live in a small town that does not have a rheumatologist and I’m wondering if it is safe to get the Covid 19 vaccine while taking prednisone.

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@cavachon I'd like to extend my welcome to Mayo Clinic Connect, a place to give and get support.

Below I have linked a discussion specifically related to your question and I have also linked the COVID-19 Group main page.
– PMR and Corona Virus (COVID-19) vaccine https://connect.mayoclinic.org/discussion/pmr-and-corona-virus-vaccine/
COVID-19 Group
-https://connect.mayoclinic.org/group/covid-19/

I've already posted this elsewhere on CONNECT but, below I have linked CDC information regarding the COVID-19 vaccine and underlying conditions
– How CDC Is Making COVID-19 Vaccine Recommendations https://www.cdc.gov/coronavirus/2019-ncov/vaccines/recommendations-process.html
-Vaccination Considerations for Persons with Underlying Medical Conditions https://www.cdc.gov/coronavirus/2019-ncov/vaccines/recommendations/underlying-conditions.html

Like John, I'd be curious what kind of guidance providers are giving regarding the COVID-19 vaccine and other conditions?

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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.

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was one of your symptoms fatigue

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@rivergirl8243

was one of your symptoms fatigue

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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.

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