HOORAY - My GP understands PMR

[Golf-1]

Following my recent blood tests, I had a telephone conversation 2 days ago with my GP (not Pharmacist as I had been led to believe) and I am reassured that he understands PMR.

He has reduced Pred to 10mg as of yesterday, no ill effects so far after 2 days at this level.

My PMR timeline has been - March 2022 first diagnosed with PMR immediately prescribed 20mg Pred - May 2022 reduced to 15mg - July 2022 reduced to 12.5mg - Sept. 2022 reduced to 10mg.

GP has explained how he wants ME to manage PMR from now on.

After 4 weeks on 10mg I am to reduce to 9mg and continue reducing by 1 mg every 4 weeks thereafter.

I am to report to him every 2 months so that he can keep a check on progress. If at any stage, I have a "Flare Up" (his words) I am to return to previous months dosage for a further 4 weeks, and report to him immediately.

I am hopeful, with fingers crossed, and a bit of good fortune, that I could be down below 5mg in 6 months' time, and who knows, in a further 6 months, off Pred altogether. HOORAY

[Koalajane]

I am pleased that you are happy with your doctor but please remember that tapering by 10% is the best thing to do so you should be tapering by .5mg soon.

Also PMR runs its own course so do not get upset if it lasts longer than you were told. I was told 18 months and that was over 5 years ago and I still have it.

Good luck to you.

[PMRpro Ambassador]

You do seem to have struck lucky - I hope that continues!

The aim of tapering is NOT heading relentlessly for zero pred, you are looking for the lowest effective dose that manages YOUR PMR symptoms. That may be lower, you may even be able to reduce to zero and stop in 2 years or less. But that is the exception rather than the rule so take every day as it comes and then you won't get disappointed when the (almost) inevitable hiccups occur.

[123-go]

It's heartening to hear that your GP is listening to you. I agree with the advice to taper by 0.5mg as you reach lower doses and please consider that 'the lower the slower' is best at those doses with perhaps a longer time span between tapers. Good luck to you. 🙂

[DorsetLady PMRGCAuk volunteer]

Good that GP is accommodating and on board -but just remember it is only a plan - and life has a habit of throwing a spanner in the works from time to time…

Fingers crossed any spanners are only small ones …

[Golf-1]

Thank you all for you input,

I remain the eternal optimist, but I am also a realist.

I can well imagine, after reading numerous posts on this Forum, that my PMR journey from now on will be a bit up and down, backwards and forwards on dosage and emotions, but at least I feel I now have some control and have permission to up the dose if I feel it necessary, which I had not considered I should do before now.

A bit more information for those interested - my GP is referring me to a Rheumatologist to have a look at what might be causing my breathlessness; the reason I originally contacted GP 2 years ago. Once PMR was diagnosed, GP thought treatment for PMR might solve the problem, but it hasn't.

Having never had contact with a Rheumatologist before, I am not sure what their function is or if they might have different ideas on PMR ? having come this far I hope not !

[DorsetLady PMRGCAuk volunteer in reply to Golf-1]

Not 100% sure Rheumy is right person for breathlessness - and their opinion may well be reduce steroids as quickly as possible -hope s/he is more open minded than that.

Rheumatologists specialize in diseases that affect the joints, muscles, bones and immune system.…..

[PMRpro Ambassador in reply to DorsetLady]

Shouldn't do if the symptom was there before the PMR diagnosis.