Polymyalgia Rheumatica

The latest copy of Saga mag.has a 2-page article about PMR. Those of you with experience of this painful condition may want to check it out for us.
Just as I was about to cancel my sub.the Sep issue has 3 very good items-including a list of fifty of the best blogs from over-50s

I will ask my Saga friends to let me have a look at it. Thanks, Maniac. PMR has hit the headlines since it became known that Princess Alexandra is suffering from it.

Didn't know Princess Alexandra was a sufferer .Haven't seen/heard of her for ages.She presented the degrees at my son's graduation-over 25 yrs ago
She was charming and as always looked so elegant.

HI everyone. saw my doctor yesterday, after suffering almost 3 weeks with what she and I thought was just muscle strain and taking Naproxen, with it just getting worse. Pain and stiffness in neck, shoulders, arms and hips. worse getting out of chair or car and in bed every time I turn over. She printed out a 3 page leaflet on PMR and tooka blood test and put me on 10mg steroid, I go back to see her next week.
I wasupset and dismayed when I read the leaflet, because of signs to look out for GCA as well as the long term use of steroids and the side effects.
I have recently been in hospital twice for pnuemonia, first time for 11 days and had pleurisy with it. just recovering, felt unwell again and had to go back in for a week as I had a relapse.

I am 66 and normally fit and well, apart from migraine which I have had since I was 20. but have had a very stressful period in my life over the last 13 months. I wonder if this could have contributed to both of these illnesses?
Thank you Gransnet forhaving these forums and would love to hear from anyone else in a similar position

Hello kate1947. I've had PMR for four years, quite mildly most of the time for the last couple of years. I recently had a flare up for a few months but now am almost pain free again on 5 mg Prednisolone.

You have to look out for GCA but I shouldn't worry too much. If your eyesight goes blurred and you get a pain in your temple get it checked.
Nothing will happen all at once.

As for side effects of steroids, I hardly had any that I know of. I didn't put on weight. One side of my face swelled up a bit when I was on my maximum dose of 15 mg but went down again as soon as the medication was reduced. I am having a bone scan for osteoporosis soon but that is because I have been on the medication for 4 years. I'm not too worried.

I went through a very stressful time just before I developed PMR and often wonder if that was a contributing factor. However, my mother also suffered from it so heredity might come into it.

Stay positive. 10 mg of Pred is a low dose. It is said that below 7 mg there are no side effects.

Best Wishes.

thank you Petallus for your reply, I will be reporting back, after 6 days of 10mg steroids, am almost pain free, it's like a miracle! I'nm seeing the doctor tomorrow for the results of blood test

Hi Kate, I've had it for over two years - fortunately without GCA. I find that this web site is both informative and frequently reassuring as it's managed by people who have it or have had it and have gathered a lot of authoritative information about PMR/GCA. Good luck with the blood results. 10mg of pred is unusually low for a starting dose, but if it's working, that's good. I'm almost down to 1.5, having started on 20.

Hi Kate I developed PMR when I was 49 and had it for about 2 years. I'm now 61 and have never had a relapse.
Stress-related? Abso-blooming-lutely!!
The highest dose of Prednisolone I ever had (started on) was 10mg and it went steadily down, mainly, I believe, because I saw a number of complimentary therapists as well as the rheumatologist.
I didn't have any steroid side-effects either. My biggest fear was piling on weight but that didn't happen. I did speak to the rheumatologist about it, and she said that steroids do not cause you to put on weight. They can make you feel very hungry, and that's where the weight gain comes into play. Her advise was recognise that the hunger pangs are not 'real' and ignore them ;)

Hi thank you for your replies, as I and none of my friends or family have ever heard of it! Saw the doctor again last week, although much better, just a bit of pain and stiffness in one hip and buttock, she has put me up to 15mg steroid and go back next Tuesday.

I must admit that I find it a bit scary to say the least, when I read the literature that the doctor gave me, particularly the (GCA) which might develop!

I feel positive all this is too do with prolonged stress and worry, as have had a really awful 12/13 months, What dose do you take NannaAnna?

Hi again kate1947 Sorry, didn't spot your question sooner.
I haven't taken Prednisolone for years. I was well on the road to recovery via my various complementary therapists by the time I saw the rheumatologist. She started me on 10mg, stating categorically that it would increase, but it quickly went down to 5mg and then I was off it in no time with no symptoms and no recurrence in the years since.
I hope you're doing well yourself.

Hi NannaAnna I'm seeing my Doctor on the 5th November, have reduced to 12.5mg for two weeks and now 10mg for 2 weeks until I see GP again, I'm feeling fine, no pain, but have a bit of Acid reflux which I've never had before, so think it may be the steroids

Hi Kate, I've had it for 16 months and am now down to 1.5mg of pred. Your acid reflux could easily be caused by the steroids or are you taking Alendronic Acid to prevent osteoporosis? You should ask your GP about this. You could have a proton pump inhibitor like omeprazole or just take a dose of Gaviscon Advance after meals and at bed time. On this website you can talk to people who have had it or still have it and know as much about it as many doctors!

What I should have said is that I've had it for 28 months - I missed out a year. How could I forget that?

And what's worse, I seem to be repeating previous advice. That's old age for you.

Yes I do want to reanimate it this thread.
I'm well and truly cheesed off. I had to go up to 5mg of pred a few months ago because I was having a flare, having got down almost to 1mg, with a very gradual reduction. A blood test this month showed no progress on the inflammatory markers so the GP bumped up the dosage to 10mg. Still achey at times, especially when tired and in the mornings!
So how is everyone else doing? There's a very good book about this condition:
Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide by Kate Gilbert, a founder of the pmrgca website. Available on Amazon, Kindle or print edition.
I think I need to re-read it today!

I'm feeling good at the moment having had no recent flare ups. I've been less stressed and less busy for a while and it's certainly having a beneficial effect on my health. Are you taking calcium anno?

I was diagnosed with Polymyalgia Rheumatica in March 2019 but was probably suffer symptoms for nearly a year before. Starting a daily dose of 15 mg Prednisolone was like a miracle cure. Unfortunately I had two relapses when the Prednisolone was being reduced. On the second occasion I ended up in hospital for 2 weeks and the only way to control the Polymyalgia was a 60 mg daily dose of Prednisolone. I was also diagnosed with large vein vasculitis. Treatment since early November 2019 has been to reduce the Prednisolone and start Methotrexate. My daily medication is now 25 mg Methotrexate per week and 10 mg Prednisolone daily.
I am still in a lot of pain when walking and can only walk very short distances before stopping to recover. Just lately I have awful pain in my left shoulder which requires daily painkillers. I know everyone is different but does anyone else have isolated pain such as mine in the shoulder and did it go away in time?

Hello - I’m new to this site. I’m hoping you will be able to help. I had an influenza like illness in March and recovered but three weeks later had a relapse and keeps recurring with aching loss of appetite and fatigue.. it’s now nearly 4 months later. Called my doctor as I am thinking it’s a post viral fatigue still and ge thinks it’s Polymyalgia Rheumatica .. going for blood test on Monday. Don’t feel well at all. Any Gransnet members follow a similar experience? Would be grateful for thoughts ... thank you.