Pmr questions

[pmrpap]

Hi friends I've ust been diagnosed with Pmr my pain in my arms my shoulders my wrist in my neck hurts so much I can hardly dress myself the doctor pout me on 15 mg pred day told me I can't go any higher because of the side effects could potentially kill my kidneys I'm waking up a terrible night sweats .,.,is this from the inflammation or that prednasone ...is there anything else I can take the cold weather makes it worse I live in pittsburgh I'm thinking about moving to florida with daughter.... how long does pmr last.. will I have this forever.....doc doesn't seem to tell me too much thanks

[piglette]

PMR is excrutiatingly painful in my opinion. I started on 20mg of pred. No one mentioned kidney problems, just high BP and possible bone damage with osteoporosis, so I had a bone scan about three months after starting the pred. I also take vit D and calcium tablets. I was told to cut out extra salt. Did the pred help the pain? In my case it was like a miracle. I had really bad sweats as a side effect, but they have improved a bit. They reckon that fifty per cent of people with PMR will get over it in six years. Some people as little as a couple of years. In fact it never actually goes away but goes into submission so there is a possibility it may come back. I am not sure how often that happens. They say cutting down and stopping the steroids too fast can cause problems, so it is better to take it slowly, although most doctors seem hell bent on you cutting down as quickly as possible which can cause the PMR to flare up if you are not careful and then you have to increase the dose again. I do hope you are feeling better now you are on pred.

[sharon1953 in reply to piglette]

My GP started me on 30 mg, the pain vanished in about 20 mins and the fatigue I'd had for 2 weeks. After 7 days on this dose he started to reduce it. 2 years later I am on about 6mg and manage the dosage amounts myself depending on symptoms. I've had bone density scans and all is ok - I just wish I could down below 5 mg but every time I do the fatigue and pain returns. I have found doing my own research was the best way to find out everything but change your GP if the facts they are giving you are incorrect.

[PMRpro Ambassador]

Well all I can say is I know an awful lot of people whose kidneys are potentially on the downhill slide! I would suggest you find a doctor who really knows what they are talking about because I don't think yours does.

15mg is the normal starting dose for PMR - and it should achieve an improvement of about 70% in your symptoms overall within a week or so. However, some people, especially heavier patients, need 20mg. And no, it won't destroy your kidneys. Once the symptoms are under better control you start to reduce very slowly to find the lowest dose that controls the symptoms reasonably well. You may not be totally pain free, but you should be very much better than without pred. And you should find a maintenance dose that is below 10mg - but you might need a bit higher to get things under control first.

Follow this link and you should find a lot of information that will help - all reliable and medically approved.

pmr-gca-northeast.org.uk

Yes, sweats are typical of PMR and also of pred therapy - the two together really are a pest! It will get better.

Do not allow your doctor (who is obviously terrified of using pred) to try to get you to reduce too fast - that will only result in a return of the symptoms. Read this link for advice on reduction:

healthunlocked.com/pmrgcauk...

[Celtic PMRGCAuk volunteer]

pmrpap, you need to change your doctor to one who knows that steroids are quite safe for the kidneys, in fact they are used as a treatment for certain kidney conditions. Your kidney function is more likely to be adversely affected by uncontrolled/untreated inflammation coursing through your body. That is what happened to my sole kidney function when I was left without a diagnosis and therefore without treatment for a year.

You haven't said how long you have been on steroids but if your 15mg dose doesn't improve your pain by about 70% in a week or so, then you could need a slightly higher dose of 20mg. This could help to improve the night sweats but the steroids themselves can cause continual sweats for some people until they reach the lower doses.

No, you won't have PMR "forever", although no-one can tell you how long it will last as we can all present a little differently with our symptoms and respond individually to the treatment. About a quarter of patients recover in a couple of years, whilst for others it can last much longer. Importantly, once your symptoms are more under control, don't let your doctor reduce you too soon or by too large an amount. If the 15mg does soon take effect, you will need to remain on that dose for between 4 and 6 weeks. I hope you start to feel better soon.

[Zoesquare1]

Agree you should probably do some doctor shopping. Pred is a steroid that directly effects the adrenal glands that sit on top of the kidneys (adrenals secrete natural steroids, so pred gives those glands a rest). Maybe that's what he was referring to (?), but that's really only a concern when weaning off of Pred (we must wean Pred extremely slowly to let adrenals "wake up" and start secreting natural steroids again).

Pred would only be a problem for kidneys if you already have advanced kidney disease and can't excrete the drug in your urine. If you have no serious kidney disease (and even if you do), do some doctor shopping. You need someone who is up to date or at least willing to get up to date. As Celtic said, pred is even given in some cases of kidney disease, to decrease kidney swelling...

[Polywotsit PMRGCAuk team member]

Hi and welcome to the PMRGCAuk forum! Sorry to hear you are suffering with your PMR, but you'll find a wealth of personal insight, support and information on this forum. Visit our website on pmrgcauk.com and you'll find more information e.g. about our helpline (0300 111 5090) and the network of support groups around the country. We can send you a free information pack too - just call us on 0300 999 5090 or email [e-mail]. The book, 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide' is available in paperback or ebook, on Amazon, or you can order a copy by emailing the info email address above. Proceeds from sales of the book go to PMRGCAuk

Good luck!

Kate