Don’t know where to start

I have had Polymyalgia and Giant Cell since 12/2016. Started off high dose of 50 mg worked great helped with pain n mobility immensely. Then to 30 then 20 now still at 10mg. Every time I taper down to 7 mg. I crash n it hurts worse. I have never been pain free.

in June 2021 my colon burst they blame prednisone. Had another surgery to hook me back up and then way too many things in between.

I finally went to church forgot about the stairs, and anyway I am all over in pain and all I want to do is sleep. Oh I also have long Covid with headache n chronic fatigue…don’t know when that will go away.

I am at my wits end. I am wondering if I was misdiagnosed. I always thought this was just for a few years I am past 7. I have a rheumatologist appt next month.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear about all your woes… unfortunately for some people PMR and GCA does last a lot longer than most realise.

But if you keeping having issues at 7mg then either your PMR is still very much alive [less likely to be GCA] and/or your adrenals are struggling… or as you say you have something else going on. Long Covid obviously won’t be helping either.

Has anybody addressed the Long Covid issue ?

This link may help on the adrenal front - but you do need a straight talk with your Rheumy next month -

healthunlocked.com/pmrgcauk...

[Hidden in reply to DorsetLady]

Thanks the GCA has been under control for years. Yeah no more video visit. Last time she wanted to give me an injection n I have such adverse reactions to meds. So I said no.

[PMRpro Ambassador]

I'm afraid it isn't always a few years - there is a group on the forum who are well into double figures, I am nearly 18 years in, over14 years on pred. There are a few forms of PMR, it is recognised by some top rheumies that one is a chronic relapsing form.

I'd say the same as DL - but are you trying to go from 10 to 7 in one go? If so, no wonder you are having problems. However - you are never heading relentlessly to zero, you are looking for the lowest effective dose which often registers as you getting stuck at about the same dose repeatedly. And, to be honest. 7mg is not too bad at all.

At 7mg you are looking at 2 problems which must be balanced, one is the PMR, the other is regaining adrenal function. Both can cause similar symptoms so it can be complicated and the only way is to drop 1/2mg at a time and VERY slowly - and accept some compromises on the way. The fatigue may be quite severe.

[9lives]

hi Gimo sorry to hear about your experience. I too was diagnosed in 2016 with PMR and started on 20mg pred. I finally got down to 1 mg in 2022 and tried to reduce to 3/4mg in January this year but to no avail. I am now on 2 mg as the aches and stiffness came back . I will probably wait awhile before I decrease again. Unfortunately we need what we need for the PMR/GCA but that said you may be wise to see your GP to rule anything else out.

When reducing at lower doses it needs to be done in smaller increments , over a longer period so the body is not affected too much, but I’m sure you are aware of this.

It’s all very frustrating but hopefully you will get through this.

Good luck

Carole

[Hidden in reply to 9lives]

Thanks for advice. I think I need to taper slower. I drop 9 one week then 8 the next then 7. Guess I am going to fast on taper.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Much too fast…..0.5mg a time and every 3-4 weeks…..

[PMRpro Ambassador in reply to Hidden]

1mg per MONTH is more like it - and faster than that is said by experts to be predictive of flare.

[Rugger in reply to Hidden]

I am using the Dead Slow Nearly Stop (DSNS) taper plan and taking 38 days to reduce by 0.5mg. S l o w d o w n!

[Hidden in reply to Rugger]

I was on a forum a long time ago and now remember seeing the dead slow is it posted anywhere?

[Rugger in reply to Hidden]

Look in FAQs (Frequently Asked Questions) under 'T' for Tapering Plans and you'll find the links.

[Chespoll]

Hi, I was diagnosed 2016 too, first PMR then GCA.In 2022 I thought it had finally gone then flared back up in July.

Its been rubbish most of this year.

Then last week visit to Rheumy who diagnosed return of GCA - back up to 40mgs!

Hope you get some answers or direction from your Rheumy appt.

All the best

[Hidden in reply to Chespoll]

Oh that is really a bummer. I am so sorry to hear that.