hi, i am looking for opinions regarding the way my doctor has decided to manage my pred

My pred reduction plan started at 20mg for 3 weeks then 15 for three weeks and now I'm on 12.5 for three weeks. So far so,so. The initial relief was unbelievable, I went from hardly able to move to being able to climb trees if I'd wanted overnight. Immediately after the reductions some discomfort set in but nothing I couldn't live with.

Unfortunately the last drop was accompanied by a dose of PHM so it's a bit tricky to say how it's going. The pain from PHN is very specific and comes in straight lines whereas the pain from PMR comes in lumps, so I think the PMR is OKish.

My next drop, 3 weeks after the last will be to 10 and there after my doctor will decide on the next stage when he sees how I'm doing, (sound logical to anyone?) although he said he'd be very surprised if the whole thing lasts more than 15 months or so. Optimistic or what ?.

"Optimistic or what ?"

Possibly - though men do often get through PMR much better than ladies! We have our own theories about that needless to say but you'd possibly be offended if we suggested gents are a bit more precious about not doing the housework and shopping than we tend to be ;-) If you avoid the things that make PMR hurt then you can get away with a lower dose of pred! After 12.5mg I'd be asking for drops of 1mg at a time. Just in case.

Whatever which way - good luck!

Eileen

If you mean physical work is detrimental to PMS sufferers then I guess being a roofer for a living, self employed at that so unable to get any money whilst not working, therefore still putting in at least 8 hours a day hard manual labour, there's no hope of me ever getting cured. Or is it only house work and shopping (of which I, and most men I know do my/our share) that counts.

Please don't get in a huff - I do know exactly what you mean since I too am self-employed and well aware of the "no work = no pay" problem.

HOWEVER the majority of people who have been diagnosed with PMR are over 60 so they do mostly have a choice. Three times as many women as men are diagnosed with PMR. This combination has been a major factor in the past in terms of interest being taken in identifying a cause and cure - the bulk of patients do not figure in the financial world. This is gradually changing - in the last few years the guidelines have been amended so it is not a diagnosis to be considered in over 55s but over 50s which brings a far larger group who are working into the fold.

As a woman even when fit I'd be unlikely to have to deal with the weights you do as a roofer - but when I had PMR pre-pred I couldn't lift a mug with tea in with one hand without running the risk of dropping it. My hands simply didn't work and trying to prepare food or hold the vacuum cleaner was not only painful for my upper arms at the time but also left me so exhausted I couldn't walk more than 50 yards or so. Before that I had regularly done workouts in the gym, skied and worked part time as well as being self-employed and running our household - my husband didn't do what perhaps you might call "fair share" of that. He manages a fair pie and oven chips and can grill bacon - but that's the limit!

I commented on the "optimistic" point because there is little argument that you almost certainly recover better when you can manage your lifestyle to allow rest than when you can't. Most of us remain in awe of our younger "colleagues" who have to continue working in whatever sort of job and are faced with getting up, getting dressed and being somewhere by a given time. We know that at our worst we couldn't get out of bed and dressing was a major challenge. With pred that became a possibility again and I worked - but my office was in my house. I couldn't have used public transport to go far - because after a couple of hundred yards I was in so much pain with tendonitis I couldn't walk. That was on pred - it took me somewhere between 9 and 12 months to be able to say that had gone but I was still on well over 10mg of pred, anything less and the PMR was back.

So - in our experience, 15 months is very short and resting makes a massive difference. And that applies whether you are 50 or 65, working or retired.

Hi I started off with terrible headaches on one side of my head. I went to see a rheumatologist. Had the blood tests no raised sedimentation rates so he dismissed it with very sarcastic remark. I should also add that I had a TIA 6 months before. He said try steroids if you like but they wont work and you will get moon face. Thanks!! After suffering another 3 months a then getting pains in shoulders and hips I went to see my lovely lady doc. who put me on steroids and II had immediate relief. You are probably better with a good GP than consultant. Hope all goes well for you. There is light at the end of the tunnel.

Mousemum - I wonder if that TIA was actually to do with the GCA?

This bit about the ESR/sed rate is something that really gets me annoyed - according to the medical literature 1 in 6 patients with PMR or GCA does not have raised "acute phase reactants" as they call them. But a very general impression suggests to me that any patient who has "normal" blood results is not merely ignored but almost bullied by arrogant rheumatologists. Over the last 30-odd years of experience of the healthcare field I have come across some fairly obnoxious consultants. So far - rheumys are in the running for the gold medal! That is, however, not to say there are some excellent ones out there! If a couple of weeks of pred achieves a good result then it doesn't really matter what the exact diagnosis is, nor what the blood tests say. But I have come across docs like that one "pooh pooh, you'll get fat with pred..." and then are totally uninterested in whether the pred worked or not.

Maybe I'm strange - but I'd rather have a fat face than be blind or in a wheelchair.

Eileen

Thanks Eileen agree with you 100 per cent!!!

Carol