Tapering advice please

[Westland1]

Would be so grateful for your help. When PMR hit in February 2023 thought I’d be off steroids in a couple weeks how foolish was I…..

Prescribed Prednisolone 20mg February 2023 tapered to 10mg 3 weeks later, GP didn’t give instruction and I didn’t understand but it worked.. At some point was changed to Deltacortril Enteric. Reached 2.5mg daily in middle 2023. GP advised taper 2.5mg every second day. Got a bad flare up went back up to 7mg daily and slowly tapering since with another mild flare up early 2024, did not have to go back up to 7mg at that time. Now I taper monthly. I’m now on .625mg daily Deltacortil Enteric (2.5 cut in quarters). Feeling fine. I feel like the PMR is gone but I’m still wary. Take paracetamol when needed.

Can I change to Prednisolone .5mg (1mg cut in half) daily for 3 or 4 weeks? Or if not what can I do? Thank you everyone for your great advice and sorry for the lengthy story.

[DorsetLady PMRGCAuk volunteer]

Hi,

You shouldn’t really be cutting EC tablets - it defeats the purpose of having them… you can go onto Pred 0.5mg [so 1mg cut in half]. Some do manage to cut theirs into quarters if necessary- bit fiddly.

You can also use a slower tapering plan - see selection in FAQs, [linked below] but just be aware that many in your situation have though PMR had gone only to find that 0.5mg [or in your case 0.625mg] had been controlling it a lot more than they realised.. can I ask why you are taking paracetamol as well? That may indicate that current dose is not quite enough.

healthunlocked.com/pmrgcauk...

[Westland1 in reply to DorsetLady]

Thank you for your reply. The GP advised taking paracetamol as well. The paracetamol I take would be 2x500mg (or sometimes 4x500mg in a day when I work physically handling heavy equipment). When I’m not physically woking hard I have no pain. My job as a fisherman I think has taken its toll on my body and most fishermen have pains, it’s difficult to know what’s what. That’s why I’m concerned about tapering because of the deadly flares.

[PMRpro Ambassador]

Deltacortril is just a brand name for prednisolone so you can switch if it makes it easier.

And as DL says - why do you feel you need paracetamol? Is that other sources of pain and discomfort? Few people find it helps with PMR.

[Westland1 in reply to PMRpro]

Thank you for your reply. Paracetamol works quite quickly when I have pain, maybe this is pain from my fisherman days, I don’t know…Sometimes I can get a random stabbing pain out one of my wrist or in the middle of my arm but it goes after an hour, PMR i don’t know.

I’m no longer getting the pains of PMR down my neck and legs. I don’t want to go off the steroid too quickly, the flares are painful…. I’m stuck…

[PMRpro Ambassador in reply to Westland1]

Sounds OK then. You aren't MEANT to get off the steroid quickly. It has cured nothing and is a management strategy to keep the inflammation that causes the symptoms under control until the underlying autoimmune disorder burns out and goes into remission. And that can take anything from about 2 years to 10, or in some of us, even longer.

If you had an inflammatory arthritis, you would be put on medications called DMARDs, Disease Modifying AntiRheumatic Drugs, and no doctor would even suggest that wasn't for life. Pred is OUR drug that does the same thing, manages the inflammation to prevent the longterm damage it can cause.

[Westland1 in reply to PMRpro]

Thank you for that explanation, very helpful.

‘manages the inflammation to prevent the longterm damage it can cause’

What would be the longterm damage?

[PMRpro Ambassador in reply to Westland1]

Inflammation damages the tissues. In PMR and GCA it is mainly blood vessels and it can cause scarring on the inner lining of the arteries - and that makes it more likely that they would become blocked in peripheral vascular disease. Inflammation in the body over a long time also increases the risk of various illnesses - includin g cancer, depression and many other things.

PMR is a pain but relatively less serious - it tends to just affect muscles, but sometimes it can become GCA - and when GCA develops, then the blood supply to various organs may be compromised and the best known effect is on vision when partial or total irreversible loss of sight may occur as happened for DorsetLady who was only diagnosed when she woke blind in one eye. But it also increases the risk of stroke or heart attack if it isn't treated in a timely manner.

[Westland1 in reply to PMRpro]

Thank you PMRpro for explaining it all. Greatly appreciate it. What a shock for DorsetLady…

[Westland1 in reply to PMRpro]

I have just read GCA which is very serious. Thanks again for your help. I’ll see how it goes..

[DorsetLady PMRGCAuk volunteer in reply to Westland1]

I have just read GCA which is very serious.

Surely is, as some of us can testify….🤔

[DorsetLady PMRGCAuk volunteer]

As stated, paracetamol usually does very little for PMR itself.. even though it might help with add-ons that sometimes accompany it.

Would say with your physical [and stressful] occupation you have reduced too quickly- hence the flares.

No matter what you GP may think, or you may read online, PMR can last a lot longer than 2 years…and being fit and working doesn’t cut any mustard…. It will last a long as it wants.

Personal opinion, you need more Pred - working and non working days rather than taking paracetamol.

[Westland1 in reply to DorsetLady]

Thank you for your advice, I’m on holiday at the moment so no work involved. I can monitor how it goes and if I feel more pred. is needed I will up the dose. Thank you for the link I’m looking forward to reading it. It’s great to get advice honestly…..many thanks!

[DorsetLady PMRGCAuk volunteer in reply to Westland1]

We certainly “do” advice -and honestly -been there, blah, blah, blah 😊

[Westland1 in reply to DorsetLady]

Thanks Dorset Lady.

[alangg]

You've heard from the experts (DL and PMRPro).

PMR hit me when I was 59; physically fit and active doing a quite strenuous job. Using the advice from this forum, I devised a tapering plan that took me nearly 3 years to come down from a starting dose of 15mg to zero.

Mine was a smooth, relatively pain-free journey with no flares, no having to go back up to a higher dose and being able to carry on my work throughout. BUT, I was one of the lucky ones! Several people on this forum have not been so lucky and they have my sympathy.

So my advice is that if you are not suffering side effects from the pred, treat it as your friend and reduce the dose very, very slowly.

[Westland1 in reply to alangg]

Thank you so much Alangg. Great to hear you had an almost pain free journey.

When the GP detected PMR - at first I was given a script for prem. in several mg and told to take 20mg for 3 weeks no further instruction. That why I dropped to 10mg - I was unknowledgeable regarding slow tapering but it worked. Finally when GP told me to take 2.5mg every other day, the flare was crippling. I was following GP instruction to the letter, my wife found this forum, passing on the advice given here which I am finding really helpful.

Thank you for your advice which I will be doing. Reducing very very slowly.

[PMRpro Ambassador in reply to Westland1]

It is the idea that alternate days with zero is likely to work that shows how little understanding that GP had of PMR. Many are struggling by the next morning even with daily dosing - the antiinflammatory effect of pred lasts 12-36 hours so for most it is barely 24 hours.

[Westland1 in reply to PMRpro]

👍Thank you for that.