PREDS FOR LIFE

[JOHNONE28]

It will be 6 years in April since I was first diagnosed with PMR & was put on 15 mg of pred by my rheumatologist, which had the effect of clearing my symptoms within 24hrs my rheumy said at that time that the PMR should burn itself out in about 18 months, I reduced the preds quite successfully having a few blips mainly due to chest & other infections which of course always put the taper of doses back. However I did get down to 2mg before symptoms returned (about 2 yrs ago ) so then it was back up again to an increased dose. since then I have reduced twice to below 3mg only to experience a return of symptoms I am now back to 3mg & wondering whether i should bother trying to reduce any further, if so how long should leave before trying to reduce again or should I resign myself to being on preds for life. Discussing deductions with one GP about 2 yrs ago he said that I may never get off preds. Overall my experience with preds apart from skin bruising has been very tolerable. Whilst on the preds my symptoms of PMR have been practically none existent having no effects on my daily life.

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[DorsetLady PMRGCAuk volunteer]

Personally if 3mg "cuts the mustard", then I would consider staying on it. You may get off one day, but in the meanwhile 3mg is very low, with minimal side effects - so better the devil you know and a life that can be lived!

[PMRpro Ambassador]

No-one can predict how long your PMR will last - and 18 months was a slightly loony view if you ask me:

medpagetoday.org/rheumatolo...

The median duration of management of PMR with pred is 5.9 years - there is time, lots of people have it for a shorter time, so there must be people who have it longer!

But if I got to 3mg - I'd stick!!!

[SheffieldJane]

I agree with the advice that you have been given. I think I would be content to stay at 3 mgs. You have the quality of life and nothing in the way of side effects. You may feel like trying again one day. I wouldn’t be too worried. I am sure flares are more harmful.

[Grants148]

I am on 5 mg of pred,l did manage to lower the dose to 3 mg,then my GP was pushing me to reduce and that led to a flare and increasing to 5 mg.l am finding that this dose is only just keeping my PMR from another flare,l have been asked by my GP to reduce down to 4 mgs on alternate days but l am reluctant to do that.l think that if you are feeling OK on 3 mg,l would not take any chances and stick to the 3 mg ,l wish l had done that .

[jinasc]

You need to ask for a Synacthen Test. Put that in your search engine and read. NHS website and webmd have good explantions.

This test is given to you by an Endochrinologist, your GP will have to refer you. This test will tell you whether your adrenal glands are working, sleeping, waking up or never going to wake up. If the latter pred for life and more than3mg and the Endo people will then monitor you.

So you don't need to make a decision till you have the facts.

[maria40]

I've been taking pred for 20yrs now, initially for PMR and more recently GCA. I'm now on 8mg reducing to 7.5 and will be happy if I can get down to 5. I've never been lower than 4mg. Like you, my increases have often been for reasons other than PMR/GCA symptoms returning. Only when I got down to 4mg did they come back fully.. I know that my cumulative dose must be horrendous but I feel alright at the moment and will continue to reduce to 5 if I can. You are lucky to have a GP who doesn't push you to come off completely.

[PMRpro Ambassador in reply to maria40]

Like me - only 9+ years so far, nearly 15 years PMR symptoms, and a cumulative dose that must be way over 20g. But I feel fine, have no obvious identifiable pred-side effects, notably no loss of bone density and no diabetes and a reasonable weight. But I can live!