I was diagnosed with PMR in Sept 2023. ESR was 57 CRP was 46.
My GP put me on 50mg of Pred for a few days with a slow tapering down.
Currently I am on 3mg but am really uncomfortable day & night, and unable to do some normal daily tasks such as brushing hair, drying my back after a shower, vacuuming etc.
I have read some posts and I may have been a bit keen to get off the Pred. I have been reducing weekly, most seem to stay on the dose for a month.
Any advice welcome.
I am amazed you have got down to 3mg so quickly without a lot of discomfort. Just increase to the dose where you last felt happy. I would consider slowing down in your reductions next time.
Thank you, I will certainly do that.
As already commented, a very quick reduction. May be worth you having a peruse through the FAQ'S, as well as lots of information about PMR/GCA there is also a section on the various tapering plans that people use.
You have answered yourself… too fast a tapering regime…. Would have been ok at higher doses - and why on earth 50mg for PMR? Usual is starting dose is 15mg …25mg max.
This gives advice for flare -
healthunlocked.com/pmrgcauk...
But would suggest you probably need to stabilise at 5 or 6mg as a dose - before you consider tapering again - and once a month, not once a week. Tapering as quickly as you have it’s probably difficult to know what your lowest ‘good dose’ was….
Hello there, I’m not sure why your doctor started you as high as 50mg as it isn’t necessary or recommend for PMR. As others have said, then it was too fast a reduction. I don’t know if the doctor explained but the Pred isn’t the cure, it is a safety net. Your immune system has decided to attack its own tissues, in this case some that involve skeletal muscle which causes inflammation. The Pred damps this inflammation so you can function and will be needed until your immune system sorts itself out which is commonly a few years. It is essential you are on a high enough dose. You are reducing to find the lowest dose that will deal with your level of inflammation, not merely to get to zero and off Pred. In order to do that you need to reduce very slowly and to get to 3mg in 4 months is lightning speed and of course your symptoms will come flooding back because your inflammation isn’t being covered.
Others have made suggestions as to what to do now and 1mg or even 0.5mg per month is more the speed you want but you need to be at the increased comfortable dose long enough to feel ok before setting off again. Try to avoid reducing too fast and having to repeatedly go back up which we call yo-yoing because it seems to make it more difficult to get things under control again and you end up ingesting more Pred than you would have done if you had kept going down nice and slowly.
Your advice has been very helpful, thank you.
You aren't heading relentlessly to zero - you are looking for the lowest effective dose and you have gone below that. However - even if I ask where did you last feel good, you won't be able to give a realistic answer because of the speed you have reduced - it takes 2 weeks at least to know if the new lower dose is still enough. In your place now, I would try 5mg and see how much better that feels - though I would suggest a week at 10mg first to clear out the accumulated inflammation, If the 10mg works, that is a confirmation you are in the right sort of ballpark. Even that is a pretty good result after less than 4 months.
Thank you for you advice. I will certainly start back at 10mg for a week. Should I then go to 9 or 5mg?
Can you remember when you last felt good? Normally you would go 1mg at a time but maybe you could get to 7,5mg straight away. It is so difficult to know when you dropped at 1mg per week.
Super advice from the usual suspects above! Its not easy to ignore advice from ones GP or Rheumato but they often seem not to take on board that less than 50% of PMR patients acheive a reduction as per the Guidelines and your reduction was super speedy over and above that.
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