1. < Polymyalgia Rheumatica (PMR)

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

Posted by dar9216 @dar9216, Jan 7, 2021

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?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

grammy82 | @grammy82 | May 28, 2023
In reply to @moldy "Swollen feet and legs. Cushy (I looked like a cabbage patch doll) which, after I was..." + (show)
@moldy

Swollen feet and legs.
Cushy (I looked like a cabbage patch doll) which, after I was off it, left my old, non elastic skin, with major wrinkles.
Glucose reading of over 400 (up from 85-95 normal).

Jump to this post

I know @moldy I wear support hose and that really helps. Now I only wear them a few days a week. If I can get out for a walk, it helps the swelling. I know I sit too much for my circulation.
My highest sugar was 350, but I was in the hospital getting IV Solumedrol for asthma. The nurse would test me before each meal and give me insulin if needed. I used to, and still do, love Moose Tracks ice cream, but I just don't eat sweets anymore. Have you gotten any help in managing your glucose? 💞

REPLY
Teri | @tsc | May 28, 2023
In reply to @sirmac "I was diagnosed with P.M.R. 2 years this August was prescribed prednisone 3 .5 mg tablets..." + (show)
@sirmac

I was diagnosed with P.M.R. 2 years this August was prescribed prednisone 3 .5 mg tablets / day for 2 weeks, the 2.5 for 2 week , then 2 for 4 weeks then 1.5 for 2 weeks, then 1 for 4 week then .25 mg . when i am on .25mg i start to det an head ache, my temples ache, my neck and shoulders ache and my hands and fingers ache like and tingling burn. My dock re prescribed prednisone .25 to 1 5mg tablet /day. there are time when I am no the .25 tablet the body pain including head ashes and temple aches to the point of felling nashis. I go back up to 1 .5mg pill, the pain will go a way but after 5 days or so I start to fell the pain again. drop back to ,25 mg so far not to bad we will see

Jump to this post

Hi @sirmac, I'll chime in with @johnbishop below that the dosage of prednisone seems low for PMR. I think patients usually start with 15 - 20 mg of prednisone, then taper. The dosage also, seems very low if you have Giant Cell Arteritis. I was diagnosed with that and put on 40 mg of prednisone, as I am small in stature and low weight, then tapered down by 5 mg every two weeks. As John mentioned, Giant Cell Arteritis, untreated, is serious. It can result in blindness or stroke. Usually a biopsy of the temporal artery is done to confirm the diagnosis. It's important to see a specialist, usually a rheumatologist, who has experience in treating this disorder. I wish you the best!

REPLY
valerie6062 | @valerie6062 | May 28, 2023
In reply to @grammy82 "I also belong to a group in the UK and they are hard pressed to get..." + (show)
@grammy82

I also belong to a group in the UK and they are hard pressed to get Actemra for GCA. I don't think they can get it for PMR. I believe if their Dr. says they have RA, they can get it. I'm not sure about here in the States but this is a good place to find out.
I've been taking it since October 2019 and it finally enabled me to taper my prednisone, although my case was misdiagnosed for about nine months...so it got a running start. One month, 4 injections costs about $5000....don't faint! I only pay $45.00 for the first month of the year and then 'extra help' kicks in. I pay nothing after that. I think it falls under 'catastrophic illness'...though I don't feel catastrophic. I'm 82, and have Medicare Advantage through Blue Cross/Blue Shield.
I hope that at least helps.💞

Jump to this post

I too have LCA , 80 years old and live in Australia. Don't know but reasonably sure that Actemra is not available. My rheumatologist has not mentioned it. At the moment I am coming down for 2nd time from 50mg to now 12mg. Am taking advice to take it very slowly . I don't want to go up again. My dr suggests 10 mg by next time I see him which is in 3 weeks. I'm not rushing. Too traumatic to have to go up again.

REPLY
1 reply
sirmac | @sirmac | May 29, 2023
In reply to @sirmac "I was diagnosed with P.M.R. 2 years this August was prescribed prednisone 3 .5 mg tablets..." + (show)
@sirmac

I was diagnosed with P.M.R. 2 years this August was prescribed prednisone 3 .5 mg tablets / day for 2 weeks, the 2.5 for 2 week , then 2 for 4 weeks then 1.5 for 2 weeks, then 1 for 4 week then .25 mg . when i am on .25mg i start to det an head ache, my temples ache, my neck and shoulders ache and my hands and fingers ache like and tingling burn. My dock re prescribed prednisone .25 to 1 5mg tablet /day. there are time when I am no the .25 tablet the body pain including head ashes and temple aches to the point of felling nashis. I go back up to 1 .5mg pill, the pain will go a way but after 5 days or so I start to fell the pain again. drop back to ,25 mg so far not to bad we will see

Jump to this post

I am now on 1/2 .5 tablet and not feeling to bad ,fingers have a light tingling and a very light head ache just above my ears towards my eyes . Went for a 28 l bike ride yesterday and felt good. My shoulders and upper arms usually are weak and pain but not yesterday, just a bit when when I first started my ride all on all I felt quite goon

REPLY
1 reply
sirmac | @sirmac | May 29, 2023
In reply to @sirmac "I am now on 1/2 .5 tablet and not feeling to bad ,fingers have a light..." + (show)
@sirmac

I am now on 1/2 .5 tablet and not feeling to bad ,fingers have a light tingling and a very light head ache just above my ears towards my eyes . Went for a 28 l bike ride yesterday and felt good. My shoulders and upper arms usually are weak and pain but not yesterday, just a bit when when I first started my ride all on all I felt quite goon

Jump to this post

It was a 28k bike ride

REPLY
issyb | @issyb | May 29, 2023

I agree totally with your response!
Especially.. the goal of a decent quality of life 🙏❤️

REPLY
moldy | @moldy | May 29, 2023
In reply to @grammy82 "No ringing in the ears; I know that must be beyond difficult. After three years, I..." + (show)
@grammy82

No ringing in the ears; I know that must be beyond difficult. After three years, I have lost muscle mass and strength. It took me over two years to get to 10mg. My skin was very thin and tore quickly, and my body 'bruising' often made me look like a leopard. I've heard of other things, but I have not gotten them. I still have capillaries that burst with no touch. The fatigue of the disease is much better, but I still treat my energy like money in the bank and am careful about how I withdraw it.
I've been on Actemra for three years, also. I hate to think of what it would have been like without it. My case of GCA went for almost a year undiagnosed, and it was tough to get it to simmer down. Once, I admitted to myself that I had to listen to my body...that GCA was the boss and I could help manage it. I used to nap daily for a few years but don't anymore.
At present, I take 3mg per day and still take Actemra. I know there is treatment for tinnitus. Have you been to an ENT specialist? Hope he/she can help.
It is a journey, to be sure but the good news is it ends.💞

Jump to this post

There is NO treatment for Tinnitus that am aware of. There are a number of "snake oil" ads on the internet though--don't trust them. My wife has had it for many years and been to every specialist and no one can do anything about it. She actually thinks giving up peanut butter and bananas might have lessened it a little. Sounds strange, coincidence or something else? But if so, what else? She just lives with it but is always aware of changes in the tone or intensity and tries to think back to what may have prompted the change. She also has substantial hearing loss and can verify that your ability to hear has no bearing on the tinnitus.

REPLY
bren2023 | @bren2023 | May 29, 2023

What if you have pmr and can't take prednisone because of a heart condition.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | May 29, 2023
In reply to @bren2023 "What if you have pmr and can't take prednisone because of a heart condition." + (show)
@bren2023

What if you have pmr and can't take prednisone because of a heart condition.

Jump to this post

Hello @bren2023, There is another discussion that might be helpful answering your question.

--- What's a good anti inflammation drug (not prednisone) for PMR?: https://connect.mayoclinic.org/discussion/recommended-anti-inflamation-drug-not-prednisone-for-pmp/.

Have you discussed alternatives to prednisone with your doctor or rheumatologist?

REPLY
1 reply
bren2023 | @bren2023 | May 29, 2023
In reply to @johnbishop "Hello @bren2023, There is another discussion that might be helpful answering your question. --- What's a..." + (show)
@johnbishop

Hello @bren2023, There is another discussion that might be helpful answering your question.

--- What's a good anti inflammation drug (not prednisone) for PMR?: https://connect.mayoclinic.org/discussion/recommended-anti-inflamation-drug-not-prednisone-for-pmp/.

Have you discussed alternatives to prednisone with your doctor or rheumatologist?

Jump to this post

Thank you.
I'm seeing my new doctor tomorrow.
I just quit a doctor for being unresponsive to my symptoms.

REPLY
View MoreView Less
Please sign in or register to post a reply.