My Mum has Polymyalgia Rheumatica and has been taking Pr...

Treatment and medication
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My Mum has Polymyalgia Rheumatica and has been taking Prednisolone for about 2 years. Previously a robust, healthy farmers wife with no history of illness, she has been suffering terrible side-effects. Each time she has to reduce the dose (by only 1mg) she gets pains in her body. Last time, she had terrible headaches for over 2 weeks, they move about, sometimes over her eye and at other times at the back of her head. She has been very low, lost weight and generally feels unwell most of the time. She would like to know if anybody else with PR has suffered similar side-effects.

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im 30 and have the same arthritus as your mam, i been on prednisolone for 4 yrs now i had put 5 stone in weight my face looks like a round ballon and have strerch mark, i was on 50mg and day im trying to get off them now and down to 6mgs a day because i was in so much pain im now on mst morphine tablets and 4 other pain killers, instead of trying to sort the problems out my gp just keept upping the dose now im havin g so many problems getting of them :roll:

i hope my weight will go back but im still covered in unsightly strerch mark, i now also have brittle bones cos of the prednisolone so far broke my hip and both feet.

if i knew what i do now i would of looked for any alteritive medication

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Hi there! I am also on Prednisolone but for an internal problem which flares up now & again. I was on 40mgs a day for 2 weeks but as the condition has setlled I am now reducing the dose by 5mgs a week. As I have been on this medication before, I knew that the side affects would be nasty but still nothing prepares you for them. I really did not want to go on the steroids but according to my Consultant there was no alternative. You say you have brittle bones because of your long term use of steroids, has your GP not prescribed you Calcium tablets?

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Been treated for Polymyalgia Rheumatica and Temporal Arteritis for nearly 4 years. Prednisolone was given at 60 mg and reducing by 1 mg monthly. After 2 1/2 years not any better, so Methotrexate taken along with the Prednisolone. Methotrexate stopped after 18 months, but seem unable to get Prednisolone under 5mgs.

Sometimes seems that the side effects are worse than the symtoms.

List of side effects (many pooh-poohed by medical profession)

Very dry skin and hair/very itchy scalp

Itchy skin

Weight gain

Arthritic like symptoms that attack a joint then seem to move somewhere else after only a short while (sometimes only a few days)

Eye problems/ i.e. photophobia (acute sensitivity to light) pains in

Stomache pains/wind/pain around the back waist high

Shoulder and neck pains

Pains in the feet (nerve irritation and or cramp) tight band around the foot, etc.

Thickening of the nostril lining making it more difficult to breathe

Ears discomfort/itching/acute sensitivity to noise

Does anyone else have similar symptoms

Also had to take Adcal, Ibandronic Acid (both for bones)and Omeprazole for reflux, so some of the symtoms could be related to these drugs?

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Hi There

Sorry to hear about your mum.

I too have been taking Prednisolene for nearly two years and keep trying to reduce them. Before I found out I had PMR I was healthy and never even took one tablet a day, not like now when I take about ten.

I have magaged to get down to 5 mg but had to go up again at Christmas, not the first time and now I am down to 7mg. I am feel absolutly awful as if my legs and my brain are not connected and my legs are made of rubber. I also feel as if I am shaking inside, you cannot see from my apprearance.

After reading the instructions in the box of pills I see it mentions the side affects which I have when reducing them. It's a bit like a drug addit going cold tukey, as they say.

Today we went to a garden centre for coffee and I could only walk about 4 steps without stopping for breath and trying to organise my legs into doing what I wanted them to do. After a little shopping with the aid of a shopping trolly, then back home where I fell asleep for three hours. Thank goodness my husband understands. So I am afraid it is something we have to put up with. But I wish her all the best, she maybe one of the lucky ones who get over it quickly.

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I've recently been diagnosed with PMR and my gp put me on 40 mg been on that level for 2 weeks,and wants me to reduce by 5 mg per week well it's my second day on 35 and have that shakey feeling legs and arms feel like leadened jelly and just can't get my words out to form a proper sentence, let alone type without checking and re checking my gp did say to do it on a trial and error basis so if I still feel like this tomorrow I think I will go back on 40 and try again in a couple of days

I am also on calcium and vit d tabs and another tab once a week

not sure why he has left it to me might be cos I am in a medical profession

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Everyone seems to have been on a really high dose to start with. My consultant said that if my aches and pains improved dramatically on 15mg of prednisolone, then it was likely that my condition was polymyalgia. My Gp also advised to just drop 1mg or so at a time, but the consultant says it must be very gradual, so as to avoid the problems that everyone seems to experience.

I have been on steroid for almost two years, droppin to 10mg after 6 weeks of 15mg, and then coming down 1mg every six weeks after that. The consultant says that all his colleagues have different views, but his is to remain on steroid for as little time as possible, expecially as I am in my 50s.

I had to go onto the coated tablets because of the most severe heartburn and reflux, and and am now on 2.5mg. Unfortunately I tried to get right off back in February, dropping to 2mg, and then to 1mg, and then alternating 1mg for 2 days, and none for 1 day. Gradually got to nothing, but found that I flared with pain over about two weeks. This usually happens to me when reducing, so thought to wait for it to pan out, but it didn't. Had headaches, terrible muscle pain, and could hardly get my words out, could not do my job, couldn't stop crying and could hardly walk. I've gone back onto 2.5mg which has given relief to my muscle pain, and after two weeks have felt better emotionally.

I am coming down this time, at a far slower pace - half mg at a time and over several weeks. I don't want to take steroid for ever, but have accepted that it is better to remain on low dose than to have consant pain.

I think the main problem is, that you are all on higher dose, and you must come down very very slowly to avoid wthdrawal. Perhaps 1/2mg every month/six weeks. It is hard to cope with, but I believe that it must be like any other withdrawal, and it does get better (I liken this to when I gave up smoking!!)

I managed to ride through the \"flare\" as I called it, which was pain from the PMR, and headaches, but worse was the emotional outburst and tearfulness. I felt so anxious but I don't know what about, and I was planning something, but I don't really know what!! I reconised that this happened to me about two weeks after reducing the dose, and so, horrible as it was, knew I would get over it.

Your own production of this hormone has virtually stopped, and it takes some time to kick back in - this is what I have been told, even with me stopping from just 2.5mg. All I know is, that it was a most unpleasant experience, and I shan't go though it again.

A lady on one of the other experiences, suggested live yoghurt to help with the heartburn and reflux, and I have used other milky preparations especially at bed time, when it seems to strike worse! I found the weekly calcium pill unbearable, but was told that good old Tums that you buy in the chemist, would be fine to help me along on the low dose, and should be sufficient for a calcium supplement. Bear in mind please, this is only what I have been told.

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Hi Everybody, You might find it useful to look at the page on Polymyalgia Rheumatica under Medical Topics - there is so much useful advice and it has been a real life line to me! General consensus seems to be \" don't reduce steroids too quickly\",and \"the side effects of Pred. do tend to lesson as you reduce the dose\". Of course, everybody varies and one has to listen to one's own body, but a lot of people seem to find having a pot of natural live yoghurt at breakfast time, then the Pred. helps a lot with the indigestion etc.

Good luck everybody, Green Granny smile