REDUCING STEROIDS FOR POLYMYALGIA (PMR)

[CarrieP]

I have recently been diagnosed with Polymyalgia and started taking Prednisone. I have had 15mg for 3 weeks and my levels improved so now take 12.5mg. After 5 days of taking the reduced dosage my symptoms have come back and I cant speak to my Dr for a week. Just want to know if this is normal when reducing or do I need to go back to 15mg for longer although I wouldnt do it without checking with my Dr

[Patricia157]

I started eighteen months ago at 15 mg and was told by my doctor to reduce to 10 mg Prenisolone. I asked him could I reduce more slowly having read on this forum that slow reduction was better. He then said 12.5 mg so I tried that. Like you it was too much and I had to go back to 15 mg and start over again. I then reduced by one mg or a half depending on the pills you are given. Since then I have been doing my own thing as I have gained more knowledge from this forum. 

I can only speak from personal experience but I am sure you will get good advice from the PMR Pro's shortly. 

Best wishes 

[CarrieP in reply to Patricia157]

Thanks. I think that is. what I need to do when I can talk to my GP. Cant keep feeling like this as I was beginning to feel a little better before reducing the steroids. Next time I go to see him, subject to blood tests, he wants to reduce to 10mg and that will all be within 6 weeks.

[Patricia157 in reply to CarrieP]

Many doctors want you to reduce very quickly but I am afraid it does not work for most people with PMR.  I am only on 8 mg now having had two 'flares'. The recommended reduction is 10% of your current dose, but you will get further expert advice shortly. 

All the very best

[PMRpro Ambassador in reply to CarrieP]

Far, far too fast - you can't force it...

[PMRpro Ambassador]

Yes - the autoimmune disorder that causes the symptoms is still obviously pretty active and you still require 15mg to manage it. Just because your levels had gone down does not mean you can yet manage with less - apart from anything else, being on pred automatically reduces the inflammation level and so the blood markers. Had the markers gone down to as low a level as they could get or was there still room to fall further? But, as I say, the markers are not entirely reliable - they can lag behind symptoms and at higher doses of pred especially are fairly meaningless. It is the symptoms that count. You have to clear out all the existing inflammation and then adjust the dose to find the lowest dose that will manage the new daily boost of inflammation. It may be 13 or 14mg at present but it isn't as low as 12.5mg - after 5 days the bucket of inflammation has overflowed.

If you have the tablets, if it were me I'd go back asap and then check with a doctor on Monday - you could end up worse than you were to start and once a flare gets hold it can be difficult to manage. You can always stop again if he doesn't like it. A week is a long time during a PMR flare.

A more usual approach is at least 15mg for 6 weeks before trying a reduction. Many of us on the forums use a far smaller step down as well - top experts said years ago that a reduction should never be more than 10% of the current dose and that means that for simplicity 1mg drops are ideal. In addition, we suggest slowing it even further:

healthunlocked.com/pmrgcauk...

Your doctor may not have seen the most recent guidelines, published in October:

rheumatology.org/Portals/0/...

where they are now suggesting starting at a slightly higher dose - up to 20 or 25mg. This used to be the starting dose until there was a degree of concern about the cumulative dose of pred, they looked at it and discovered that people responded almost as quickly to a lower dose and so it was assumed that that would achieve the same with less pred. In retrospect though, maybe it doesn't achieve as good a result longer term. But there are no studies of optimum doses, starting, tapering or maintenance so who knows. It's all anecdotal. However, I do know a couple of people who have had it twice, the first time started on a higher dose and with no problems reducing and getting off pred. Second time round, lower starting dose and a more rocky journey. 

[CarrieP]

Thank you PMRpro that  is very helpful. I was on 15mg for 3 weeks but when reduced to  12,5mg after 5 days the symptoms came back. My inflammation markers had come right down to 8 and 5 I think the Doctor said and that's why he reduced the pred. Got to go for another blood test when I have been on 12.5mg for 3 weeks. I have just written a letter to my Dr to see if I can increase to 15mg again as when I rang the surgery the receptionist told me I couldn't speak to my own Dr for a week as he was already booked and she couldn't leave a message (that really annoyed me). I was told I could talk to one of the student Drs sooner but I prefer my own Dr.  Do you know if you can get a Blue Badge for the car or any other help as I can't walk far at the moment or do very much?  Just want to feel better again , not like this.

[PMRpro Ambassador in reply to CarrieP]

That I would NOT accept - there was a good reason for wishing to speak to the doctor who initiated your treatment regimen. I might accept it from the practice manager but I wouldn't have a receptionist tell me she couldn't leave a message. Speaking directly to your doctor is a bit different - but equally as unacceptable in this sort of situation.

Blue Badge - that depends on your local authority and their regulations. Some would give you one, some wouldn't. You can only try - many doctors would refuse support in the somewhat mistaken belief that once you are on pred you are back to normal. I existed for 5 years with PMR, no pred and no blue badge and it restricted what I did dramatically so I know where you are coming from.

[CarrieP in reply to PMRpro]

You are right it does restrict dramatically what you can do and where you can go but Drs dont seem to understand that. I went several times asking for help before I was sent  for blood tests for PMR. If I dont get a 'phone call from my Dr in response to my letter  I will ring and speak to the Practice Manager.

[Polylinc]

This is exactly what happened to me with my GP !!!

As I had been reading advice on this excellent forum, I protested in a very meaningful way !!!  I have since been allowed to manage my own reductions, with access to repeat prescriptions of Prednisolone. So ..

I went from the 12.5 she had advised BACK to 15mg for another few weeks and then reducing .5mg every two weeks have now successfully got down to 10mg since Christmas 😉

Please go back up to the dose at which you felt well and good luck x

[CarrieP in reply to Polylinc]

I am certainly finding this forum very helpful as I did not know anything about PMR or anyone with it and so was just being guided my GP, which on this occasion doesnt appear to have been right. I will let you know how I get on and glad I now know a bit more about PMR.

[Shastring]

Hi carried

Same thing happened to me, dr put me back up and even though he did I'm still not as good as before the taper. It took me three days to flare, I've been back to the higher doses a week expecting to feel as good as I was before the taper but no such luck, better but not as much. I convinced my dr, after much debate on his part to please leave me on the ten mil a day until all of my tests are complete. He is s doing a little ad of MRIs thinking he'll find degenerative damage in my hips, shoulders and neck which may be but my sudden problems tell me different, especially all my scalp and head pain. Not sure why some Dr.s are so anti pmr as a diagnosis.  You are right in letting your Dr tell you when to go up again so good like and keep us posted.

Shastring

[CarrieP in reply to Shastring]

Thanks. Its re-assuring to know other people have experienced same problems and understand.

[CarrieP]

Glad to say my letter worked. Got a telephone call at 8 this morning, went to see my own Dr this morning and had to go back up to 15mg pred as most of you suggested. May have to stay on 15mg pred for another 3 weeks and then will have to reduce at a much slower level than 2.5mg and will probably try 1mg at a time. More blood tests next week and another appointment with the Dr. Thank you all so much for your help and support that have got me through the weekend and I now know what I am looking for. Any books you can recommend worth a read about PMR?

[yos72]

Hi you need to go back to 15mg if your symptoms have returned.Stay on for two weeks and reduce the dose more slowly next time

[simfonia55]

Hi. Carrie. personally I think you should drop from 15mg by a half mg staying there for 2 wks, then try another half for another 2 wks, then see how you feel, and maybe drop to 1, really just listening to your body. good luck. simfonia 55

[Greynomad in reply to simfonia55]

I agree, dropping by half of a 5mg tablet worked well for me.