I've been on pred now since Sept 15--40, 30, 20, 17 1/2, and now 15. Feeling much better. Have been doing physical therapy to rebuild muscle loss in arms and hands from frozen shoulders. Acupuncture has been helping enormously. Would like to know about experience with DHEA -- my rheumy (US) knows about it, but said it has not been studied.
laurenabbey
Not heard of DHEA - would be helpful if you could spell it out. Notcie your in the USA as well.
It would also be of help to tell us why you are on Prednisolone, is it PMR or GCA or both. A start u p of 40mg would indicate GCA in the UK as the normal start-up for PMR is either 20mg or 15mg.
Although they are classed as sister orphan illnesses (well they call them diseases - but I am never happy with that word). GCA is more problematic as it can lead to loss or partial loss of sight.
If you can give us a bit of history we might be able to answer. You could try www.pmr-gca-northeast.org.uk a site for PMR and GCA patients with medical information and a load of other stuff as well. Including the NMR Foundation located in the USA.
Hope to here from you.
Hi both,
DHEA is dihydroepiandrosterone! There's a mouthful! It's an androgen (I think) which is naturally occuring and is sold as a dietary supplement at doses of up to 25mg. Clinically it has been tried (in a small scale trial) in Lupus to reduce the steroid dose at doses of more like 200mg. It seemed to have some success. As far as I know there have been no big trials (unlikely as it isn't a big money spinner so no-one would fund any).
The stuff you buy OTC is very variable in quality. It has few side-effects but they include hirsuitism and acne amongst others and messes up cholesterol levels. It also causes the endometrium to proliferate again in post-menopausal women. It cannot be used in anyone with a history of breast or prostate cancers - plus a few other contra-indications including fibroids in women - beacause of the endometrial effect.
Don't know much more - just because it works in lupus doesn't mean it will work in PMR, the mechanisms of the diseases are almost certainly different although both involve inflammation. But the idea of using it in PMR is certainly unusual. And you seem to be doing fine with steroids if you have only been dx'd since the middle of September.
Keep us posted!
EileenH
I've been diagnosed with PMR. It took a while to get a diagnosis--the muscle atrophy in my arms and hands threw q few doctors off. My doc was aggressive with the 40 mg starting dose because she was concernedwith my dibiliatated state. My skin was hanging off my bones on my arms. The arms are improving enormously. I am terrified of getting avascular necrosis (a potential side-effect of pred.)
Hi laurenabbey,
I know reading the side-effects profile for steroids is like a horror film, but if I were you, I wouldn't scare myself to death with the prospect of avascular necrosis because you are on steroids. It is one of 82 (or so) potential side-effects of taking steroids and it, like most of them, is particularly associated with the longterm use of high dose steroids - i.e. over 20 mg per day over years. These are the sort of doses that are used in much more severe diseases such as rheumatoid arthritis and cancers - in particular, in the case of avascular necrosis it is associated with Hodgkin's disease for some reason. Everyone will have a side-effect of some sort but they are usually the weight gain and hair growth ones.
The aim in PMR is to get the dose down as low as possible as quickly as possible - generally you would start on 15 to 20 mg and work down. Most people get to 10mg per day pretty quickly and below this the risk is much much smaller. A lot of people are down to 5 to 7.5 mg a day within a year or so although it may take rather longer to get off completely.
all the best,
EileenH