Hello everyone
I was diagnosed with PMR 4 years ago and each time I reduce I get another flare up. I am trying to reduce to zero as advised by my GP. I started at 4mg down to 3 and a half after 2 weeks then down to 3mg. Now my aches and pains have got worse so I have gone back to 4mg again. ESR test has come back at 15 which is what it was a month ago when I felt generally OK. Could the pains be due to something else? I was expecting the ESR to be higher.
Blood markers often lag behind symptoms - which is why we ALWAYS say symptoms are the key.
Trying to reduce every 2 weeks is much too quick at any dose, and once below 5mg it is absolutely bonkers, no wonder you keep having issues.
Suggest you stay at 4mg for a month, and then continue reducing by 0.5mg a time but no quicker than every 4 weeks, but even longer would be better. The lower you go on Pred dose, the slower you need to go…
Thanks, my doc just wants me off pred because of my osteoporosis. I have a rheumatologist appointment at the end of October, I’m hoping I get a definitive plan.
Your doctor may want you off pred but unfortunately PMR doesn’t want you off yet. The way he is rushing you is just making you be on pred longer. The advice from Dorset Lady is excellent advice as you cannot rush PMR. Good luck
Can understand that… but tapering you too quickly has more negative results…
a. It leaves you in unnecessary pain, and
b. Is is likely to mean you end up taking more Pred and for longer.
What’s the point in that? Maybe something to take to the conversation 😊
" I am trying to reduce to zero as advised by my GP"
You are NEVER reducing relentlessly to zero - you are looking for the lowest effective dose, a process called titration and one your GP should be familiar with, albeit with pred you do high to low, with other medications it is low to high.
The lower you get, the slower you need to go - and at any dose every 2 weeks is too fast, Half a mg every months is more than enough. Symptoms flaring at a similar dose more than once is your body telling you that you have arrived at that lowest effective dose. It doesn't mean you won't get lower - just not yet.
The pred cured nothing, it is a management strategy to provide a better quality of life until the underlying disease process burns out and goes into remission. And that may take much longer than the average GP thinks, If you get off pred then the PMR will be back. If you have a problem like osteoporosis there are other solutions to stopping pred which will leave you immobile.
There are bone protection medications that will reduce the risk of fractures and which should have been offered far sooner than now. It is recommended they are started together with pred. Have you had a dexascan? Have you got the results? Has the GP already started you on a bisphosphonate?
Although bone protection medications appear now to be as commonly advised as stomach protection meds (which incidentally can lead to bone thinning themselves) it is always better to try to deal with an issue naturally. As you already have osteoporosis then you probably do need good advice about what is the best medication for you as all of them come with differing unwanted, sometimes serious side effects. Please read up on them and don't necessarily accept the first medication offered by the rheumatologist. Colour me cynical but it may reflect which drug representative they were last in contact with.
One place where doing your own research can be very helpful!
In any case anyone can benefit from a bone-friendly diet and some judicious supplements plus appropriate exercise. For those reading this with "only" osteopenia (which is no more than normal bone thinning as we age, but can be exacerbated by medications like corticosteroids) then natural methods are really best. The only side effect is generally better health and many of us have found our bones have benefited enough to avoid having to take medication.
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