New to PMR

May, I guess your GP reduced your starting dose a little sooner than usually recommended because you were having difficulty tolerating the side effects. Having said that, a starting dose of 15mg is often prescribed and works well for many people, although some doctors feel that starting at a higher dose gets faster and better control of the inflammation.  Apart from two weeks not really being long enough to spend at the starting dose, the problem is that reducing from 20mg straight to 15mg is a bit of a shock for the body to cope with - 17.5mg in the first instance might have proved more successful.

The "readings" that people mention refer to blood tests (ESR and CRP) which can rise in response to inflammation and can be repeated and used as a guide for reducing the steroid dose, along with symptoms at the time. However, not everyone mounts these raised markers, so rely on their symptoms alone.

It is true that reading through the posts can give the impression that people are taking responsibility for their own medication "putting it up or down as they see fit".  It really depends on how well their Dr is managing their care, added to the fact that we can all be a little different both in how we present with our symptoms and how we react to the medication, and as we get to know how each one of us reacts personally, we gradually learn what works for us.  Generally speaking, the slower one tackles the reductions, the better, and we have to do our part in managing both the condition and the treatment, importantly giving ourselves plenty of TLC and not overdoing things to give the steroids chance to do their job.

There are a couple of excellent books available which new patients in particular can find very helpful.  One is called 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide' written by Dr Kate Gilbert and available from the National Charity, PMRGCAuk, www pmrgcauk com, and from Amazon;  the other called 'Living with PMR&GCA' produced by the North East PMR&GCAuk Support Group.  You can find further ordering details on the first page of this community.

Meanwhile, as your say that your pain has returned, it seems as though you need to return to your starting dose and remain there a little longer until the pain resolves before re-attempting a reduction, perhaps to 17.5mg in the first instance.

hello and 'welcome' to the club..... sorrry!

I'm wondering if the headache and other stuff are simply symptoms of the PMR itself... did they come on immediately after starting the prednisone?

Fatigue is a major component of PMR for me... so feeling tired is just par for the course.

I agree with Mrs O - try staying at 20mg a bit longer - until you really feel well(ish) and then start a VERY slow reduction..... under your Dr's supervision, of course.

I do take responsibility for my own medication - under my Dr's supervision - because I'm the only person that knows how I feel... and PMR is such a fickle beast.

Sorry you are having these feelings.  I started on 40mg. for a month then went down to 30mg  I felt wonderful and had lots of energy in the beginning, but did have trouble sleeping.  I was a happy person who saw the world through rose-colored glasses!  That gradually subsided, darn it.  I did have lots of problems with bruising, cuts that took forever to heal, sothe MD is now tapering more and I am now on 10/7,5 (alternate days) and next week will go down to 7.5 ev. day.  I have had no recurrances of the awful pain and stiffness, just some fleeting back  hand discomforts, fatigue, muscle weakness etc,  So far I have been fortunate, except for the terrible skin lesions I've had treatment for by MD and podiatrist.   Hang in there and stay in close touch with your doctor.  I do hope you begin to feel much better.      Elinor

Hi May,  I was diagnosed just over 7 weeks ago and like you, my GP put me on 20mg Prednisolone to start with which I took for 2 weeks.  I too felt VERY spaced out and although I didn't have a headache as such I do remember a feeling of pressure on the top of my head. However, the PMR pain went completely which was great.

After 2 weeks my GP suggested reducing to 15mg. for 3 weeks.  I continued to feel spaced out for a while but by the end of the 3 weeks this had disappeared, or maybe I'd just got used to it!  I am now on 12mg and about to reduce to 11mg on the advice of my GP, at the weekend.  I've had a few aches whilst on this lower dose but it hasn't felt like PMR pain and nothing I can't handle.  The worst thing for me has been the feeling of general weakness/fatigue which is worse some days than others but by listening to other people on this forum I've learned that this is all par for the course and I'm gradually coming to terms with it.  If you have had a return of the PMR pain on 15mg I would strongly suggest that you contact your GP to see what she says.  Good luck.

Hi May

I was diagnosed with PMR on the 28th April and the doctor put me on 20mg Predisolone, as soon as I started on it I got a tension type headache ranging from the from to top of my head. Also I'm very tired most day even though I'm now sleeping until 7am at the earliest which is great as I was only getting an hour or two when I had all the pain which is 99% now gone. Back to the doctors on Moday to see what he say, I'm going to ask him about GCA because of the headaches just to be sure

Alan