Hi my mum was diagnosed with pmr 4 months ago she was perscribed the same steroids as I have read many people take. Unfortunately they did not agree with her. Does anyody know of any alternative theorpy to ease muscle pain?
Hello Tracy, I'm sorry to hear that prednisone, if that is the drug you are talking about, appears to not be agreeing with your mum. What has been her doses and what has her tapering regime been and in what way are they not agreeing with her. Christina
Hi thank you for replying sorry for spelling etc never been on one of these forums before. Mum started on prednisone usual rate and it was reduced at the normal rate over the time. She is of small frame and 80 this year. Her feet and legs swelled to the point where she couldn't put in any of her shoes also her neck and face swelled really badly she also felt very depressed. Her pain is consistant with (prm) but she will not go back on the steriods so I was wondering if there was an any alternative ways of helping her. The doctor gave her this website and said nothing more he could do untill she see's consultant again in March
Tracy, I have no qualifications but it is wholly unacceptable of your mothers gp to say that there is nothing they can do for her re medication if she appears to be showing severe side effects to the drug. They should have contacted her rheumatologist without delay to request an urgent appointment with them so that she is offered alternative medication, without delay. Are you saying that your mother is now not taking any medication for PMR, which I assume she has been diagnosed with. The trouble with PMR is that the pain is the result of inflamation due to a problem with the immune system, basically it attacks itself. Prednisone only reduces that inflamation, it does not cure the condition that although is self limiting, can be around for many years and so therefore we need prednisone to reduce the inflamation for many years. However, there are other drugs out there, again not particularly nice ones that can be used in conjunction with prednisone or other drugs to help with the reduction of inflamation.
i can only assume that now that your mother is not taking prednisone all the pain and stiffness has returned. I'm sorry but she needs to see her rheumatologist Asap. Go back to her Dr and insist that he makes every effort to ensure her March appointment is brought forward. Your GP has a duty of care to each and every patient and they are falling well short of that from what I've read. Failing that you contact the rheumatologist's secretary and see if she can secure an appointment.
Tracy, your mother is elderly and I have no doubt not only in considerable pain but feeling very scared and anxious. Look after her, and get her back yo her rheumatologist Asap. There are many users of this site that have a lot of experience and medical knowledge, hang on in there, they will reply very soon. Christina
Tracy
You must do as Christina has advd and insist your Mother is fast tracked. Ring the Rheumatologists Secretary and explain the position to him/her and see if they can get you an earlier slot (sometimes if you say you can take a cancellation within a designated time parameter you can get an earlier appt). Failing that you need to spell it out to your GP in words of one syllable.
The danger with PMR, if left untreated, is that it can and does lead to GCA and that is more of a problem as that can lead to total or partial loss of vision.
The side effect of the face and neck swelling is a common one - called moonface and that does subside as you continue with the pred, it usually lasts about 4-6 months. (Upside you lose your wrinkles).
The swelling of feet and ankles, should have been dealt with by your GP trying your Mother of 'Water' tablets (generally Fruesimide).
The 'depression' is also a common side effect and not only depression, but mood swings - this also lessens overtime, but if it persists - that can be dealt with as well.
It does not follow that because your Mother is 80, she has to be left to suffer unnessarily. If the GP does not play ball, change practice.
However, you can be given intravenous injections of prednisolone but this is only done and arranged by a Consultant and after s/he has establised that it is the only way forward.
PS What was the exact starting dose - you answered with usual. This can be 15 - 20mg?
How long on the starting dose and what were the reductions and how big?
Hi Tracy, I know Eileen, one of our guru's will reply with some much needed help for you but I would ask a couple of questions - you say the dosage of prednisolone was reduced at the 'normal' rate - there isn't really a normal rate - it can be different for everybody tho if starting at 15mg you can reduce to maybe 12.5mg and then 10mg over about 3 months if blood tests are ok. Did the swelling start shortly after your mother started taking the pred or only after she started reducing?
Tracy, has also raised a very important point that sometimes some patients will suffer some unpleasant side effects, but as she has said, there may be another medication that will counter that side effect until your mother is on lower doses of the prednisone. Her Dr needs to explain this condition and how it's kept under control to her and hopefully you, or maybe like so many gps, doesn't really know much about it. Christina
No, the standard treatment for PMR is pred. Other medications are being tried out but they are all to be used together with pred in the hope of reducing the dose required but few work well, those that help have side effects that are sometimes as bad as pred.
You say it didn't agree with her: what do you mean? All of us have some side effects, some worse than others, but they reduce as the dose reduces and you have to weigh up which is worse: the pain and handicap of PMR or the side effects of pred such as weight gain. Some side effects can be combatted with medication (high BP for example). Believe me, none of us would be taking pred if there were a better alternative.
I had PMR for 5 years before it was diagnosed and had to manage it myself. Aquaaerobics every morning in a warm pool helped me get moving, and both pilates and yoga helped. So did Bowen therapy. But I never had a day without pain and I was very restricted in what I was able to do. Taking pred was a miracle in relation to what I'd been through - despite weight gain, raised BP and a few other things. Given the choice - no choice: pred plus side effects would always be preferable.
Christina - the unfortunate truth is that there are no real alternatives, none that have been proven to work well and they also have some fairly nasty side effects of their own.
Yes, this lady needs to be fast tracked to a rheumatologist but there is nothing to say he can offer anyting else that is significantly better.
Tracy: During the 5 years I had PMR without pred I ended up needing a size bigger in shoes. During the time I was on pred I needed bigger shoes again. Now I have lost that weight I have expensive shoes that are now too big without very thick socks. I put on about 35lbs in weight - on a 5'1" frame that is a lot. As an indication, the clothes I was wearing then, including to my daughter's wedding, are about 4 or 5 sizes too big now. I could have stopped taking pred, the weight would have gone but I would have been immobile and in a lot of pain. For me, water tablets would maybe have helped a bit but most of it was weight gain - I have now lost it all as the dose has come down.
I really don't want to sound as if I am being unsympathetic but it may well be there is little other option - if it is PMR. The side effects can, to some extent, be helped with a bit of thought and other medication. Many elderly patients become depressed, that can be helped too. If however, your mother were to go on to develop GCA there would be no option. Without pred she would be running the risk of blindness. There is some dispute as to whether untreated PMR is more likely to progress to GCA, but about 1 in 6 patients do develop GCA.
I'm so sorry you are being faced with a rather difficult task - your GP isn't all bad, he gave you this forum which is more than most manage! All of us have been where your mum is now - none of us liked being fat, hair going mad, skin falling to pieces, but it was the pay-off for being in less pain. My granddaughter has severe asthma which can only be controlled on 20mg pred/day. She has gone from a size 8 and sharing her mum's clothes to 87kg, nearly 14 stones. She is 14. Pred does that - but it gives you a better quality of life otherwise.
Hi thanks for all the advise really appreciate all the comments will follow it up with My Mum
Do give your mum some self help remedies may make her feel better in as much as she is doing some thing to help her self .When I was diagnosed with PMR I ask a friend of mine who is an osteopath what I could do in the way of helping my self .Now he had gone into the antinflamatery types of food to eat which may help .Beetroot and sweet peppers are some of the food types.So if you Google food to help PMR it may well come up with some ideas for her to try or even advise against eating . It may just give a placebo effect but while all this trauma with getting to see the specialist is going on around her she may feel as though she is doing herself some good . Hope she will get to see someone soon although it is a very up and down disease and is something that has to be lived with at times . Every time I drop a 1mg I am usually back on co codamal a few days later for severe pain but after a day or two it subsides I relax and fingers crossed after the next blood tests I can drop another 1mg Fingers crossed for her Carol
Hi 🙋 Tracy l have never heard of someone not being able to accept prednisolone my system has rejected methatrexate and azathioprine l am at moment on mycophenalate but still on 12 mg pred hope this helps mum good luck 🍀