Recently diagnosed with PMR . Preds not working feeling unwell . Is there an alternative.
ESR 62
Alternative medication : Recently diagnosed with... - PMRGCAuk
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Juapce63
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Sorry to hear you've "joined the club". And like all the rest of us you'd much rather not be on pred but there really is no alternative. How long did you have PMR symptoms before diagnosis? What is your starting dose and when did you start taking pred? I just read your profile and saw you started at 15 mg, a pretty standard start. However did your doctor also run a battery of other tests to rule out other ailments which can present with polymyalgia as a symptom? (You can google polymyalgia rheumatica differential diagnosis if you want a little reading matter!) The moderate dose pred is the last step in the diagnostic process and a good response to anywhere from 15-25 mg is often definitive. Other things will respond to higher doses.
The other point is, I hope you weren't told to drop directly from 15 to 10, but did this in a slower way?
Dear heron My symptoms were a few weeks before I had numbness in my hand and arm .
Then went for my Covid jab , I’ve not had Covid on the 18th match . On the 25th March I was unable to get out of bed , the pain in my neck back shoulders and hips was horrendous. I was unable to put my clothes on or go for a wee . I contacted my doctor who sent me to our local hospital for a ESR blood test .
I then contacted Colin Pease a rumotologist at a private clinics .
The next day the bloods came back as ESR 62 . I went to see the specialist who confirmed that it was PMR he gave me a steroid injection. This worked for two days then the pain was back with a vengeance . The doctor then gave me preds 15 mg to be reduced . I’ve not been pain free at all . I’m taking 8 paracetamol through the day . I can’t sleep and I’m feeling very depressed which is not like me at all . I go for my bone density test tomorrow and the GP is calling me too .
😢😢😢😢😢
The fact paracetemol is not helping is another sign it really is PMR as PMR doesn't respond to this painkiller because it is actually not an anti-inflammatory. Really pred is the only thing which reliably works and if you are on the proper dose it should relieve your pain very well indeed. If the initial dose didn't help within a few days it would have been wiser for your doctor to recommend an increase in the dose, not to expect you to taper as originally directed. There are many people who post in this forum who have needed 20 or more to get the initial inflammation under control. There are a number of logical reasons for this difference among us, including how well we individually metabolise pred, some people get more benefit than others from the dose while others need somewhat more to achieve the same pain relief.
Hello and welcome. I’ll just fill in until the PMR experts wake up tomorrow or have a look here if they can’t sleep. Sorry you’re feeling so desperate. In answer to your question, there really is no drug that reliably helps other than Pred. Were you ever feeling comfortable? The possibility is that you were either not on 15mg long enough or you needed a higher dose to start with. Some need 20mg or even a bit higher. You sound like you are in the worst of all worlds by having all the side effects but one of the relief. Pred does come with its issues but these do reduce with dose and we just have to wait it out until that comes. However grim that sounds, it is so much less grim if you are actually getting a result. One thing to remember is that the steroids are not curing the autoimmune condition; they are just stopping the ill effects of the inflammation your body is producing until it decides to stop. The difficult challenge for most is to slow down and stop trying to live life as normal, taking lots of rest to deal with the fatigue in the initial months. Feeling jazzed up as well as exhausted and insomnia are very common so rest is essential. The hunger and risk of weight gain and possible diabetes needs to be addressed early by eating a very low carbohydrate diet. You’ll thank yourself.
Anyway, sit tight and more replies will come. I’m off to sleep (I hope!).
There is no alternative to steroids I am afraid. What dose are you on? If the steroids are not working either you need a slightly higher dose or you do not have PMR. Most people say they had a magical improvement. What were your symptoms? Have they improved at all? Have you tried pain killers and did they work?
Dear piglette My symptoms were a few weeks before I had numbness in my hand and arm .
Then went for my Covid jab , I’ve not had Covid on the 18th match . On the 25th March I was unable to get out of bed , the pain in my neck back shoulders and hips was horrendous. I was unable to put my clothes on or go for a wee . I contacted my doctor who sent me to our local hospital for a ESR blood test .
I then contacted Colin Pease a rumotologist at a private clinics .
The next day the bloods came back as ESR 62 . I went to see the specialist who confirmed that it was PMR he gave me a steroid injection. This worked for two days then the pain was back with a vengeance . The doctor then gave me preds 15 mg to be reduced . I’ve not been pain free at all . I’m taking 8 paracetamol through the day . I can’t sleep and I’m feeling very depressed which is not like me at all . I go for my bone density test tomorrow and the GP is calling me too .
😢😢😢😢😢
If you are not getting paracetamol to work and the steroid injection worked it probably is PMR. It does sound as if you are on too low a dose. I don’t understand why you went to see a rheumatologist as your GP seems to be doing a good job? Around 75% of people with PMR never see a rheumatologist. I also don’t understand if your rheumatologist thought you had PMR why they gave you a steroid injection but no long term steroids?
The doctor was great . But I didn’t get to see anybody due to covid . I just needed a positive diagnosis.I started on 15 mg now on 10 and I’m thinking this is too low . GP calling tomorrow so maybe it needs raising .
Were you not happy with your GP and that was why you want a rheumatologist? I have got through four incredibly bad rheumies!! My GP kept saying I had a virus, so they were pretty bad too and that was why I went to a private rheumatologist. Going from 15mg to 10mg is quite a drop. I would be curled up in a ball in a dark room with that sort of drop, although some people may manage it. Did you reduce when you were already in pain as that is a total no, no?
I reduced as instructed by the doctor . As I’ve never taken any medication before I just obeyed the instructions . Now after been on here , I am thinking this wasn’t the right thing . Today I had to go back to bed and I have two businesses so not easy . 😢
Prednisolone 15 mg daily for 2 weeks), then
Reduce the dose to 12.5 mg each day for 2 weeks, then
Reduce the dose to 10 mg each day for 4 weeks, then
Reduce the dose by 1 mg every 4–6 weeks until treatment is stopped
This was the instructions
Dear lord!!!! No wonder you felt awful! Just reinforces what I've heard about him. And he will have pocketed a tidy sum for doing it ...
DorsetLadyPMRGCAuk volunteer
Short answer, as you’ve already been told, not really.
Longer answer, looking at your profile, would say you’ve never really got the PMR under control.
If you’ve never been pain free, then either -
you didn't have a large enough starting dose (15mg works for most, but not all), or
you weren’t on starting dose long enough, or
you reduced too quickly, or
you tried to “get back to normal” to quickly.
Probably a combination of all.
Have a rad if this, might give you a better understanding, and tgen discuss your situation with your doctor - might be a case of going back to the beginning and starting anew -
PMRproAmbassador
If the ESR isn't falling on the dose of pred you are on, there are 2 options: either it isn't PMR or you aren't on enough pred. The starting dose for PMR should be somewhere in the range 12.5-25mg and you are aiming for the lowest effective dose - so if 15mg didn't work, then you need more. If you need more than 25mg then there is a serious question to be asked as to whether it really is PMR as we discuss it here.Just saying - but there are doctors I'd rather see to deal with PMR than the one you saw. He used to be good but seems a bit dilatory these days
Thank you I’m only on 10 mg now as it was tapered from 15 mg . Today I’ve had to go back to bed as feeling awful and in pain .
I'm not surprised. This is PMR we're talking about and it is tapering/tirating that is called for not a precipitate reduction to zero. Reducing the dose by 33% overnight is likely to cause problems More usual is 4 weeks of the 15mg starting dose and then another month at 12.5mg before dropping to 10mg. But plenty of people can't cope with that. Immediate return of symptoms like that can be due to steroid withdrawal rheumatism but with such a big drop you may well have gone to too low a dose.
This is a good approach if they insist on medical literature - and does reduce the flare rate a lot:
rcpe.ac.uk/journal/issue/jo...
Personally I think it is still too fast for many patients in the first 3 months - and a year at 10mg seems a bit OTT. Very slow and steady tapering gets patients down faster and with fewer flares and discomfort. But what do we know? We are mere patients ...
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