Hi. I was diagnosed with pmr recently and started taking 15mg prednisolone on Jan 29th. I also have an ongoing hip flexor problem and a neck problem, which are both made extra difficult to manage with the pmr as I am supposed to be doing daily strengthening exercises to manage them.
On Feb 26th I decreased to 10mg as instructed by the rheumatology consultant, but 8 days later my neck and arms seem to be getting slowly but surely worse. Is this normal and will it get better, or was this a sign that it was too big a reduction?
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Clucket
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Hello. Apart from quite a big jump as DL says, you do need to be careful with exercises. You can’t go about them like you would pre-PMR/steroids. Both things make one more susceptible to injury, so you have to be ridiculously careful and building up from very little. Wait a couple of days after a session too because delayed onset pain from muscle damage occurs more readily. If all is ok, do some more to determine your level of ability. Bear in mind also that you will have ups and downs, particularly when reducing to a lower dose.
Hi, thanks for your replies. I am super careful about the exercises that I do, having been trying to get ontop of my neck and hip problems for the past 2 years. I only increase max. 1 rep a week of any individual exercise and I have stopped increasing many of them since january. My consultant has already told me that he does not vary his prednisolone reduction regime, as it works very well . So I feel this is not a conversation that will go very well. I find him very knowledgeable but also inflexible and lacking in 2 way .conversational skills. I did ask my gp if it was possible to change consultants but she told me it was difficult and would take months.
Clucket...time to find another, highly recommended Rheumatologist NOT a “consultant”. That was way too fast to stop Preds... You deserve a flexible physician who “helps” guide you through this land mine. Serious convos are in order with both your GP (she can PUSH to get you a much better qualified one) and/or refuse to see the “consultant’ ...only the actual physician. Best of luck! 😅
Agree with the advice given but I have to say your consultant’s attitude doesn’t bode well for getting you through pmr. You do need someone who will at least discuss your point of view & take symptoms on board. Were you with him for your hip & neck problem pre pmr? If so it would be awkward to transfer your pmr care to a competent gp as it’s often managed by gps.
A few months to change consultants- personally I’d do some research to find a fully functioning one and go for it. The pmr will be with you for quite some months to come if not years (sorry) so it’s worth finding someone else. And you are entitled to ask to see some one else.
Maybe if you did a new post re finding a pmr orientated rheumy near where you live someone on here might be able to help.
I wasnt with this consultant for my neck and hip problems. I was referred to 2 different sets of physios from the gp, as they happened at different times and in different circumstances. The neck physios were all cancelled due to covid , but I now pay privately to see the hip one after the nhs sessions ran out, so I at least get some care of these problems. Do I have to use the gp to change consultant?
Yes you will need a referral don't feel guilty about changing. If you find a suitable alternative & can afford it have an initial private, you'd be seen in a few weeks then ask to be transfered to their NHS list. I'm wondering why you need a rheumy at all if you're straightforward pmr..... sorry I'm going off piste
I'm really not surprised you are having problems after being told to reduce from 15 to 10mg. You aren't reducing to dose to zero, you are tapering to find the lowest dose that manages the symptoms as well as the starting dose did and in tapering the step down shouldn't be more than about 10% of the current dose. Some people manage 15 to 12.5mg, but in the early stages of PMR (i.e. the first year, not month) the underlying disease activity is still relatively high and you need more pred.
I know a lot of rheumies think this is required, pred is an evil drug (no it isn't) and they must get you off it asap. Unfortunately that isn't the way PMR works - you need enough pred to manage the inflammation for as long as it is active. You will get lower - but not by rushing at it like a bull in the proverbial china shop. Little steps - every journey starts with a single step and you still get there.
Since he is wrong - that sort of reduction does NOT work well and there are dozens of examples on this forum to tell him so - you are in a difficult position. PMR, having been diagnosed can well be managed by a good GP. She knows the problem - maybe she will take you on? The other option would be to have one really good private consultation. Is that possible?
If I saw a different rheumatologist privately, would my current rheumatologist be informed of this. I seem to remember from other unrelated private dr consultations that my gp was informed. Would the hospital also be informed.? If so, it is likely he would feel undermined by my actions leading to an even more difficult relationship.
Not necessarily - what a patient does privately is their business. Usually the private one will write to the GP with their opinion so the GP can continue to prescribe pred or whatever. Some private rheumies will transfer you to their NHS list - in the UK almost all private practitioners are also working in the NHS.
But if you DO go privately - ask for recommendations first or you might end up with someone else who hasn't a clue about PMR. And start with your GP as that is the simplest and cheapest option.
If his/her ego is threatened by a “second opinion”, that is their problem. NOT yours. Be kind but honest about your desire for a different perspective. Tough cookies if “he feels under minded by” your actions. You may need to take an advocate with you to be honest about your illness. Write notes and intimidate him when he admits his rigidity in altering his withdrawal plans. Everyone here is different. Don’t let home control you, as you may have a long way to go and you do not need that attitude. Get it?
Why on earth do doctors suggest such massive reductions? You would have thought they would realise that it is too much, unless they have very few PMR patients.
Don't overestimate and expect to much from the medical sector. Whitout using prednisone myself (but after researche on it) I concluded that it is a terrible drug with many dangerous side effects. My belief in the medical sector is even partitially restorted with such stories as those doctors trie to protect you from those side effects. However they should do more their best to figure out with you what the route cause of your inflammation is. Than the source can be corrected and no pred is needed or at least in a lower dose and shorter and you will be healed and pain free. As the cause is for everyone different, doctors have often no time to figure this out and you know your body the best so try to correct all possible triggers and you might hit the jack pot and solve your suffering overtime yourself.
You may have concluded that - however, pred is a powerful drug that saves many lives. You cannot expect clinical octors to investigate an unknown cause of an illness where the mechanism is still unidentified - they would never have time to see any other patients. Autoimmune disease is still a mystery although new aspects are being identified all the time.
As PMRPro says steroids are a wonder drug. I would be in a wheelchair without them. Having spent the last 30 years working with the pharmaceutical industry I have discovered that doctors are not that good at reading up on drugs.
Have you determined what caused your PMR symptoms in the first place? I believe my symptoms began after taking Simvistatin for a long period of time (to reduce high cholesterol ).
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