Tapering following new PMR diagnosis

[Cross-stitcher]

Hi, so glad I found this wonderful forum, I've learned so much in the past 2 weeks. My question concerns tapering and levels of pain that can be "ignored".

I am 70 years old and until the middle of March was a fit walker, gardener and could still reach to cut my own toenails. I was lucky enough to encounter a knowledgeable and sympathetic GP who, after attempting to treat my sudden onset and worsening symptoms of pain and immobility with NSAID's for a few weeks, decided to do ESR and CRP blood tests and started me on 15mg Prednisolone to see what effect this would have. As others have said, what an amazing response within less than 24 hours and a confirmed PMR diagnosis !! I am also now taking Calcium/Vit D, Alendronic acid and Omeprazole (and I have been on Levothyroxine for 25 years and also take a statin, blood pressure med and very low dose HRT).

My questions, now that my GP wants me to start tapering down from 15mg are:

Should I ignore his instructions to go straight to 10mg, and taper more slowly, e.g. via 12.5 mg for a few weeks?

Can I ignore pain levels at 3 or 4 which make me wince but do not prevent normal activities such as dressing myself etc? (I suspect I have some basic osteoarthritis in my fingers and knees anyway).

If I taper too fast, how quickly is a flare likely to come on? And is it only a "flare" if I return to pain levels of 7 or 8 (or more) and cannot, for instance, get out of bed or off the loo by myself? If the symptoms are relieved (somewhat) by Paracetamol, can I "tough it out" or should I increase the Pred a bit?

I'm sure I'll have further questions as I learn to walk the PMR walk (or ride the dragon - nice metaphor).

[Louisepenygraig]

My GP wanted me to taper from 15 to 10. It didn't work. A taper from 15 to 12.5 seemed to work until I had a flare and had to go back up. Two years later I've just got down to 10 and learnt I need to listen to my body not my ESR levels.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Not a good idea to go from 15mg to 10mg - too big a jump. Recommended taper is not more than 10% of existing dose - so that would make 1.5mg , but some can manage 2.5mg. Certainly not 33% as GP suggests!

Have a look at this, may give you a bit more info - and then come back if your questions aren’t addressed.

healthunlocked.com/pmrgcauk...

As for pain levels, really you should be aiming (not always achievable) to find the lowest dose that gives you the level of relief the initial dose did. But, as most people find out that’s not always possible - for a variety of reason, other illnesses and the individual feeling better so attempting to do too much.

Flares usually take a week or so to surface, but you may get steroid withdrawal symptoms straight way, which last 2-3days only.

[Cross-stitcher in reply to DorsetLady]

Hello DorsetLady

Thank you so much for your reply and for the link. I would like to re-post the link to the Spoon Theory, as I hadn't come across this before and I think it's a real help to those of us recently and suddenly struck down with PMR/GCA and now on Pred, and also for our nearest and dearest.

butyoudontlooksick.com/arti...

Fortunately I'm retired and so is my husband - sharing and supporting each other will hopefully get both of us through our twilight years and associated difficulties.

[PMRpro Ambassador]

No - at least go via 12.5mg but not until you have been on 15mg for at least 4 weeks, preferably 6 weeks. Whatever the level of pain relief you achieve at 15mg is your guide - you should not feel worse at the end of a taper than you did at the start. If the 2.5mg drop doesn't work, go back and insist on 1mg at a time - but many people do manage down to 10mg fairly well.

Your GP may accept this as evidence 5mg is a bit much!!

rcpe.ac.uk/sites/default/fi...

Using pred in PMR is NOT the same as using pred for other short-term disorders. And your GP needs to learn that. I started on pred at 15mg for 2 weeks, dropped to 10mg and then 5mg each for 2 weeks and then stopped. I was fine - but within a few hours of missing the first 5mg dose I was as bad as before pred. It took me 4 years to get below 10mg again - and I blame the flare it caused. It was difficult to get under control and many people have similar experiences.

[Marilyn1959]

Hi Cross-stitcher. Welcome to the club! It seems many Rheumies want a drop from 15mgs to 10mgs in one hit. Mine wanted me to alternate doses every other day, but my body couldn't cope. So I went 12.5mgs then 10mgs. Same end result but by a different method.

In respect of pain levels you may find it increases for the first few days of a taper which can be a sign of pred withdrawal. However if the levels of pain / stiffness having increased are still no better by day 6/7 of the taper this is likely to be PMR on the rise. If this happens to me by day 6/7 of a taper I go back to the dose that was working well before I tried the taper and try again at a later date.

Everyone is different, but you will become more confident at letting your body lead the way. This forum is great for encouraging autonomy in managing your condition and, if necessary, challenging GP'S / Rheumies if what they suggest is not working.

Am glad you found the forum. It most certainly should help you on your journey. Best wishes to you.