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.
I'm sorry you are in so much pain. I think you should let your doctor know. 20mgs. is the usual starting does ( some doctors say 15 ) but if that does not significantly reduce the pain then you may need more.
However, today is Saturday and you say you were diagnosed on Friday. Does that mean yesterday or Friday of last week? If yesterday then it may be another couple of days before the Pred. begins to control the inflammation; if last week then you really need to see the doctor sooner than two weeks time.
Was the handout NHS Inform? This was given to my sister and I thought it quite useful. If not, and you'd like the link, pleas reply and lest me know and I'll send you a private message ( little envelope top left ) with the link. I can't post the link publicly, it's against the forum rules.
Most of us have been in your position - before PMR (at 51) I had never even taken painkillers! I do love how helpful GPs can be - rheumies tend to be even worse!
20mg is a standard starting dose - although 15mg has also been used for years, may be enough and you could try taking that the first day. It worked a miracle for me in 6 hours but not everyone responds as fast as that. However, a 70% improvement in symptoms is to be expected in the first week at most. Some things improve faster than other - the stiffness goes first I think, can't really remember! Just the absolute wonder of being able to move easily! The bursitis I had took a few months to go - but then, I had had 5 years of PMR with no treatment! And antiinflammatories, other than pred, do nothing at all for PMR. Pred - no you're talking!
Have you found this post?
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
It is our reading list collected in one place. The NE PMRGCAUK site is particularly good I think (though I am biased) with their archive of newsletters with a lot of info for PMR patients.There are also patient stories to encourage you.
Where are you? There are local support groups across much of the UK and if you can get to one you really do realise you are not alone.
Betty - is it an NHS website link? If so you should be able to post it - NHS is allowed these days!
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.
Here we go. Let's see.
https://www.nhsinform.scot/illnesses-and-conditions/muscle-bone-and-joints/conditions/polymyalgia-rheumatica
Funny - wonder why it hasn't come up as a blue link like the one in my post? But copying and pasting it into google works...
Hi Eileen - do you know if there is a support group currently meeting 'down south' in the UK please? I'm near Southampton..... I think I pinged someone a message from the list a couple of years ago when it began but I didn't hear back?
http://www.pmrgca.co.uk/groups/
That's the list of all of them and it should be up-to-date. Port Solent????
Should have scrolled further down!! Southhampton...
Welcome! Did you take 20mg yesterday and today? How do you feel so far?x
Thanks Eileen. I think I contacted Southampton but didn’t hear back and they aren’t showing any info. However Port Solent has meeting dates and is also fairly near by. Thank you. RD
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
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?
Over time, you should be able to slowly reduce the prednisone dosage. I was diagnosed with PMR a little over 3 years ago, and started with a high dose like you. I am now down to 3 mgs a day - It is not a short duration condition. Good luick.
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. .
I tried acupuncture and found it was a complete waste of time although I believe others found it helped.
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.
Hi BettyE
I only started the Preds today but I have been on anti inflammatory since Tue, now advised to stay off the anti inflammatory and if I need to can take paracetamol. Think I was just tired not had much sleep in two months and resilience is low with the pain. Feeling better tonight and ready again to take this on, I guess you have strong days and not so strong days. I will check out the website.
Thanks for responding.
Hi EileenH,
I live in Essex, will check out local support groups had not thought of that.
Funny I mentioned the PMR to some people and they said oh!
Thanks for the link, I guess it’s a case of do my own research build up information.
Thanks for the support.