Decrease in Steroids

[Brooklyn747]

Hi there, and thanks for allowing me to join in. I'm a p.m.r. sufferer for the last 15 months with the usual horrible symptoms which doesn't get much sympathy from friends or medicos. I have been given strict instructions to taper my prednisone dose from 5mgs down which I dutifully did.

However I really came unstuck and wet back to 5mgs again. I was made aware of a process which involves a very slow reduction which I intend to follow.

Wish me luck 🙏

[DorsetLady PMRGCAuk volunteer]

Hi

Maybe have a look at these tapers, and see which one appeals-

healthunlocked.com/pmrgcauk...

And just be aware some issues may be down to adrenals -

healthunlocked.com/pmrgcauk...

But are you saying that you started on 5mg ? Comment above seems to imply that. If so, I’m wondering if you ever had your PMR fully controlled…

[SPEH in reply to DorsetLady]

I’ve been tapering by 1/2 a millegram over periods of 4 to six weeks: i.e. from 8mg down to 7&1/2mg, from 7&1/2 to 6mg. I don’t experience much pain mainly tiredness walking. I do believe in the affect on the adrenal glands is important to be aware of. Most of the time I feel reasonably normal but very occasionally I “crash” especially if tired and stressed. Note: I’ve been on prednisone since October 2020 and now contemplating going from 5mg to 4&1/2 soon. Wish me luck!

[Brooklyn747 in reply to DorsetLady]

Thanks DorsetLady, originally I commenced prednisone 10 myself for a month or so. I'm afraid Doctors here in Australia are very keen to reduce your steroids as quickly as possible. That seems to be their main aim, and of course I understand why, but they also fail to see the discomfort it causes.

The side effects are pretty awful and they want you to decrease reasonably quickly.

[HeronNS in reply to Brooklyn747]

If you're on the usual lowish dose for PMR there are usually not awful side effects, and any of concern can generally be mitigated. I hope your PMR symptoms were relieved adequately if not completely by your initial dosage and that you felt very much better?

I have never understood why some doctors fail to understand that pred is a necessity for a PMR patient as nothing else works. Pred isn't a cure, but it can give us reasonably good quality of life with far less danger than the doctors think! Eventually PMR usually goes into remission, but that can take several years, and so far there's no guaranteed way to make that remission come faster! Until then, with pred we need what we need.

[Brooklyn747 in reply to HeronNS]

Many thanks HeronNSI'm managing on a low dose...just

[DorsetLady PMRGCAuk volunteer in reply to Brooklyn747]

Side effects can tough, but no point not being on enough to control illness -worse of both worlds.

[PMRpro Ambassador in reply to Brooklyn747]

No-one gets all the side effects of pred and some get very few or even none, I've been on pred at above 10mg for most of nearly 10 years and I haven't yet had ANY side effects that were worse than PMR! If you aren't on enough to manage the symptoms then the left-over inflammation will build up over time until you are back when you started. Either you need enough or there is no point bothering!

[SPEH]

see my (SPEH🇨🇦)reply via DorsetLady .