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Morning all,
Friday I was told by my GP following blood tests that I could have PMR, was handed a prescription for Prednisolone with a link to a website and told to come back in two weeks. You may notice the lack of any other information given to me. My mobility has gone down hill in the last 8 weeks the mornings are worse so much pain, and unable to turn in bed like my muscles have lost their strength.
I was given anti inflammatory tablets but I still cried with pain and frustration this morning.
I have read lots since Friday and I guess I am in for the long haul with PMR. Normally I am a very active and flexible 62 year old, currently working full time, now my 85 year old Mother in law moves better than me. Really not keen on these steroids and 20mg seems a lot, but I will stick with it for two weeks.
I would be keen to hear about any dietary advice, particular exercise and has anyone tried acupuncture?
So far I have not had to take any tablets and hate taking them now.
My respect to those of you who have suffered with this for so long, I really admire your resilience to keep going.
I would be grateful for any advice.
0 likes, 51 replies
liz76821 CATME
Posted
My experience with GP also. Stay with this blog, it's so supportive. Don't reduce too quickly, you'll feel even worse! The charity site is excellent for resources. Check for a local support group. Mine meets monthly.
Good luck.
CATME liz76821
Posted
I got so frustrated at my appointment the GP said how can I help you? they called me in re the blood tests!
Anyway it is what it is, had bad menopause and again found it better to rely on my own research.
Thanks for sharing the info.
Sheilamac_Fife CATME
Posted
CATME Sheilamac_Fife
Posted
Started the 20mg today and took some paracetamol, much improved thank you for asking. Just very tired not been sleeping to good and I hate the mornings, lets see what tomorrow brings.
margaret_84727 CATME
Posted
Hopefully you're feeling a bit better now! I found predislone almost magical, but have only been predislone free for 3 months in last six years. Am trying to cut down again currently, and have learnt from this forum. I wonder how many percent of people manage to come off predislone and actually stay off...I get the impression that as the actual disease still lurks underneath there is not much hope. is it just a question of finding the lowest dose you can function at??? When I came off for three months I was soooo reluctant to start at a high dose once again and left it till I couldn't drive as couldn't get hand from arm to steering wheel and had gp telling me I could go blind if I didn't go back on. Sorry, off topic, but good luck, CATME!!
EileenH margaret_84727
Posted
For 75% of patients with PMR the underlying autoimmune part of the disease burns out and goes into remission in up to about 6 years. Only 5% end up requiring pred for life - and for some of them it is probably because of poor adrenal function rather than the PMR as such. The median (or average) length of PMR is just under 6 years - so it disappearing in a couple of years is obviously unusual. It is said that patients who get off pred so quickly are more likely to have a relapse at a later stage. What I think happens is that PMR cycles in activity - and while you may be able to reduce well while it is relatively inactive, if it increases again later, the symptoms come back because the dose is no longer high enough.
These links are to articles about the same research but with slightly different emphases:
https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings
https://www.medpagetoday.com/rheumatology/generalrheumatology/66912
Your GP is a bit OTT - but had you gone back to a low dose as soon as you realised what was happening you would probably have avoided going back to such a high dose. Many experts suggest adding 5mg to the dose where a flare appeared - and very often that is quite adequate.
margaret_84727 EileenH
Posted
BettyE CATME
Posted
Why did you take paracetamol?
My GP had me try it when I was on a low dose and trying to reduce but having recurrence of pain. He wanted to see if the pain was just the OA I've had for years. The P. did nothing except duff up my liver and when I went back to, I think, 10mgs. of Pred. the pain went.
Hope you soon feel much better.
Anhaga margaret_84727
Posted
There's a zero pred thread somewhere on this site. I'll see if I can find it for you. Most people who get off pred probably aren't hanging about here, except a few kind souls who remain to give the rest of us encouragement and advice.
Anhaga
Posted
Here it is: https://patient.info/forums/discuss/zero-prednisone-discussion-450915
margaret_84727 Anhaga
Posted
diane53336 CATME
Posted
I and my sister are both early 70s and we seem to have both developed the same problem. She has just been diagnosed with Polymyalgia Rheumatika after always being strong and very flexible.With her it came on over night after an extended flu illness.
She is now taking Prednisalone and feels 50 years younger and full of beans. I don't know her dosage but she told me today that she took 8 tablets once in the morning and has already had the dose reduced to 5 pills daily. She is on the top of the world and does not ever want to come off them.
I have 5mg pills of Prednisolone incase of a bad flare up of COPD and am prescribed to take 8 tablets at once in the morning for 4 weeks so that makes 40mg daily.
I took the same dosage some years ago for a swollen tongue alergy for just a week but I had no such rejuvenating reaction and didn't need to reduce gradually.
I have not had a bad enough flare up of COPD so have not used them for a 4 week course. I shall see GP about being tested for PMR as it can be genetic and we both have had Thyroid disorders. which she was told could be a contributory factor as underactive Thyroid can be immune suppressing
EileenH diane53336
Posted
Since I assume they are 5mg tablets - I'm not surprised she feels full of beans with 40mg/day! Which is far too high for PMR, it is a GCA starting dose, but hey ho - if it helps at least she has the pred.
Your GP may be happy to at least try the normal starting dose of 15-20mg/day. I hope though that if you are to take 40mg/day for 4 weeks for your COPD, you are tapered off that dose?
diane53336 EileenH
Posted
Nothing on the box to say I must be weaned off, but didn't like the side effects on the leaflet due to my heart problems and other conditions. Is there a difference between prednisone and prednisolone?
I have not taken them for my COPD which seems to be affected more with the weather and comes and goes.
With my swollen tongue allergy, I was terrified and had been 4 hours in A&E on intravenous steroids and antihistamine as my tongue was too big to fit in my mouth and was swelling towards by throat. I was so relieved when the swelling began to go down and I could go home. And very thankful for the medication.
My sister is already down to 5 a day but still is as high as a kite, as they say but she had been in a terrible state criyng at not being able to climb the stairs,dance or do anything and she had been very active. so the relief that the pain has gone and she feels 50 years younger and full of energy has made her over- elated. I did not ask her the dose of her tablets.
She is now making the most of her regained youthfulness while it lasts as realises that it may relapse. .
EileenH diane53336
Posted
There isn't really much difference between prednisone and prednisolone: prednisolone is the active form and prednisone must be processed by the liver to make prednisolone before it can work. The doses are equivalent.
Yes I can believe you were relieved - it must be terrifying.
Providing her doctor is sensible and knows how to use pred in PMR she won't relaose - but they must understand that she isn't being weaned relentlessly to zero. The higher dose is used to be sure it is enough and then they need to wean the dose down to find the lowest dose that gives the same result as the higher doses did without any symptoms reappearing. Usually it is 10mg or less that you settle at for some time, but every so often you try a small reduction to see if you can. If it doesn't work you go back to the dose that does work and wait a couple of months before trying again. Eventually it works and eventually you get to zero. But it can take up to 5 or 6 years.