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.
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Westland1
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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.
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.
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…
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.
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.
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.
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!
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