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Polymyalgia rheumatica

(26 Posts)
Lyndawads Wed 21-Oct-20 12:26:25

Ive just been referred by my GP to a specialist to help diagnose if i have PR. Just wondered if any of you gransnetters have any experience of this condition re diagnosis and treatment. Thanks

PinkCakes Wed 21-Oct-20 13:40:49

I haven't had it, but I know a lady in her early 80s who had it last year - she was fit, healthy, walked everywhere and did her garden, etc. Then she had a lot of pains and stiffness, which her GP said was Arthritis and that she should expect it at her age! The lady even struggled to get dressed each day.

I suggested she asked for a blood test to be done, which she did, and it was found to be Polymyalgia Rheumatica. She had a course of PREDNISOLONE (steroids) and was feely better after only a few days! The dosage was reduced gradually, over weeks, and she was back to her old self. Good luck.

Kupari45 Wed 21-Oct-20 15:49:02

Yes I suffered with " Poly R" a few years ago.
I was prescribed quite a high dose of PREDNISOLONE. It helped ease the pain after a few days, however it took over a year before I could function without steriods. You have to reduce the dosage very very gradually, or the pain returns.

ElaineI Wed 21-Oct-20 16:20:09

My Mum who is 85 had it twice. She also got prednisolone on a reducing dose according to her blood test results. Same as Kupari took about a year. Her skin thinned while on it and she got lots of bruises which still happen though she has been of it for over a year.

Lyndawads Wed 21-Oct-20 16:29:34

KUPARI45- Im not even sure if it is Poly R as my blood tests came back negetive- but the GP said that this can happen!!
Im only 58 and I understand that Poly R is usual in people a little older. My arms and shoulders are painful all day- if im getting dressed, doing my hair, reaching for things and cannot put my arms anywhere near going up my back!!! Are these symptoms similar to what you had?

annodomini Wed 21-Oct-20 17:34:00

My PMR started when I was 70 in 1971. I'd felt a bit stiff and achy for a month but one day I woke up and had trouble turning over in bed, then had to head-butt the light switch because I couldn't lift my hand. My GP diagnosed it from the symptoms and the blood test showed massively raised inflammation markers and I was put on pred right away. Within just a few days I could walk 6 miles. Steroids have that effect. However, my inflammation markers took years to go down to normal and I took my last pred tablet after 6 years. A helpful web site is www.pmrgcauk. Lots of advice from fellow sufferers.

Glow Wed 21-Oct-20 17:40:09

Have you had your bloods checked for Rheumatoid Arthritas?

carolmary Wed 21-Oct-20 17:48:10

I have this condition, which is responding well to steroids.
Hope to be off them (and the other medication to counteract the effects of the steroids) early in the new year. If you think you have this condition, it is well worth seeing your GP as the treatment is usually very successful.

Lyndawads Wed 21-Oct-20 18:10:04

Hi Glow- the RA tests came back negative too!! Xx

annodomini Wed 21-Oct-20 18:47:36

What was I thinking? 1971! I meant 2011. Clearly fingers were working ahead of my brain!

Marydoll Wed 21-Oct-20 19:34:59

Anno, after some mental arithmetic, I was about to congratulate you on reaching such a good age! wink

Lyndawads Wed 21-Oct-20 19:35:01

Ha ha Annodomini!!! I thought you should be in the guiness book of records! Thanks for your message x

Marydoll Wed 21-Oct-20 19:42:12

Lyndawads, I was diagnosed with RA nearly 30 years ago. Initially all my tests were negative, but an RA diagnosis is not based on blood tests alone.
Believe it or not, my RA was diagnosed by the high doses of prednisolone for my lung conditions! A bit ironic, I think.

The specialist will look at lots of things, before making a diagnosis.
You have got over the first hurdle, so fingers crossed for some relief once you have your consultation.

Lyndawads Wed 21-Oct-20 19:56:49

Thanks Marydoll my initial thoughts were that it could be RA! Guess I'll have to see what they say when I eventually get to see someone-not holding my breath with all the covid stuff impacting all NHS services.

Marydoll Wed 21-Oct-20 20:01:20

I meant to write, my RA was masked by the high doses of steroids I took for my other condition.
Every time I came off them, I could hardly walk.

Wishing you all the best.

sparklingsilver28 Wed 21-Oct-20 20:23:49

I have had PMR twice and the only treatment is prednisolone for the pain. My first experience, I awoke one morning and could not get out of bed - rolled out onto the floor.

At the time of my diagnosis, I knew of at least six people who received the same in that week. Just like others have said, once you have had it a second attack likely. Three years on, and I am still on a low dose of prednisolone 2mg daily since inflammation markers still not normal.

At the time of my first attack the condition relatively uncommon in GP experience. As a result some reduced prednisolone too fast and before inflammation makers back to normal. Interesting to me is the sudden appearance of the condition. I read somewhere there was a concern the early polio vaccine (generation) implicated.

Funnygran Wed 21-Oct-20 21:06:33

I’ve also had poly R. Very painful but started to lessen after a few days of steroids. I was on them for about six months and came off very gradually with reducing dosage. It’s never returned although I occasionally have a couple of days where my arms and shoulders feel stiff. Ibuprofen seems to help. Hope you feel better soon.

agnurse Wed 21-Oct-20 21:12:21

My GMIL has had PMR for years. In most cases it burns itself out within about 18 months to 2 years; in her case, sadly, that hasn't happened. She has unfortunately been on steroids for years and that has caused her some health effects.

PSA: if you have PMR, and you're getting headaches, ensure that you see your provider ASAP and get a referral to ophthalmology. PMR is also linked to a condition called giant cell arteritis, which can cause inflammation in the eyes. This can be quite serious.

Coolgran65 Thu 22-Oct-20 00:45:21

I took a dreadful headache while on holiday and dosed myself with pain relief to cope with the journey home. After a week of indescribable pain (I thought it was a migraine) I contacted the Dr and was treated as an emergency for Giant Cell Arteritis as mentioned by agnurse above. I was started on Prednisolone at 60mg daily and it took a year to wean down checking markets all the time. The big concern was to protect the eyesight. Don't hesitate to contact your doctor I'd a headache appears that won't go away.

Glow Thu 22-Oct-20 01:10:48

Lyndawds
RA Doesn't always show up in bloods
But at least you were checked
Hope you keep well

Glow Thu 22-Oct-20 01:13:49

ALot of mention regarding steroids med Pred...Im on now to give pain relief from RA but the heartburn ...

grannyactivist Thu 22-Oct-20 01:24:19

Lyndawads I was also 58 when I was diagnosed with PMR. My husband was abroad when the symptoms got too bad to ignore and the pain and restricted movement was so bad that my teenaged son had to help me to get dressed. I couldn't raise my arms at all and climbing stairs was a real struggle as I had the pain in both my upper body and my back, hips and thighs. A few weeks later my daughter was suddenly widowed as a new mum and it was a dreadful time as I could barely move, but I needed to help with the baby.

I can't remember how long I was on steroids for and they weren't the 'magic bullet' that other people with PMR experience, bu they did help a little.

Lyndawads Thu 22-Oct-20 19:06:51

Grannyactivist- that sounds really horrific for you! Im glad you got through it. My pain is only arms and shoulders - i cant imagine how you managed x

NanKate Thu 22-Oct-20 19:29:53

I was diagnosed with PMR over 4 years ago and have been taking steroids ever since. Like you grannya I didn’t find the steroids as wonderful as predicted.

Roll forward to a few weeks back I saw a very knowledgeable young Rheumatologist consultant. After an in-depth appointment with her she said she didn’t think I had ever had PMR and that all my aches and pains could have been triggered by the Norovirus! She is now weaning me off the steroids. She also explained having a high ESR marker can relate to other illnesses other than PMR. I wish I had seen her 4 years ago.

What a dreadful time you had grannya💐

agnurse Fri 23-Oct-20 07:46:39

ESR is indeed a non-specific marker of inflammation. Numerous things can cause a high ESR.

The problem with steroids is that while they are fantastic at reducing inflammation, they come with a plethora of side effects. GMIL has developed obesity and diabetes secondary to steroid use, and her adrenal glands are beginning to pack up as well. Of course the steroids aren't doing her blood pressure any favours, and due to the high blood sugars caused by the steroids, her diabetes can't be properly controlled. Sadly she's effectively a walking mess, mainly as a result of the steroids. The difficulty is that her PMR has returned with a vengeance every time they've tried to wean her off steroids.

PSA: if you're on steroids, DO NOT stop them cold turkey if you develop side effects. Steroids mimic the effects of cortisol, an adrenal gland hormone. Consequently, your body senses that it has enough cortisol and stops making it. It takes a few days to recover the ability to make it. This is why, unless you're on steroids for a very short time, you're usually weaned off slowly. Stopping high dose steroids cold turkey can send you into acute adrenal insufficiency, and that can be VERY dangerous.