Advice needed please .re pred taper.

[Quinacridone]

After 18 mths reducing from 20 to 7 pred, major flare hit me. Doctor has advised me to go up to 30. 3 weeks on feeling heaps better but he now wants me to reduce by 5 a month. After the last episode I don't want it all going wrong again. As yet haven't seen a rheumatologist, app' booked in Nov' ! Originally I agreed with Doctor to get off preds asap, I guess that is everyone's wish, I have learnt my lesson and learnt so much from you all, many many thanks for that. X

[Hidden]

Hi, from what I have learned on here the drops from 30 to 20 can be made in 5mg once a month jumps. Given that 20 wasn't enough to control inflammation before. Perhaps if you are symptom free by then go at 1mg and month. Others who have actually made that drop. Might help more. It might be helpful if you could fill in you profile with your PMR/GCA story...when you were DX, initial dose, speed of taper etc. That way we can help you more. Thanks 🌻

[Quinacridone in reply to Hidden]

Thankyou xxx

[SheffieldJane]

I think it would be wiser to try and drop 2.5 mgs each 4 weeks. I would use the slow tapers recommended on here too and stop if your symptoms appear to be coming back. The treatment protocol says that the drop should not be more than 10% of your dose. At 10 mgs I wouldn’t drop by any more than 1 mg - 0.5 mgs can be even better. It is a great shame that you cannot see the Rheumatologist sooner than November. Can you be put on a cancellation list at all?

PMR lasts on average, for about 6 years and so far Prednisalone is the only treatment. The Rheumatologist my want to add in Methotrexate is they feel that you are struggling to taper off Pred. Let us know how you are getting along.

[Quinacridone in reply to SheffieldJane]

Thankyou X

[DorsetLady PMRGCAuk volunteer]

Hi

Going up to 30mg sounds a bit extreme, especially if you started at 20mg and have been relatively okay until you reached 7mg. Usual advice is to add 5mg to the last dose you felt okay at - that’s assuming you can remember what that was.

Another thing is - you usually only need to stay at that increased dose for a fairly short time - maybe a week, two at the most. Having been there for 3 weeks it’s almost like starting all over again!

You may be able to reduce by 5mg the first couple of months, but once you get to 20mg I think it will be too much - maybe 2.5mg a month until you reach 10mg.

But that’s not certain.

Your doctor may wish you off the Pred ASAP, but that’s not up to him - it’s up to the illness and you! Please don’t be pressurised by him in future.

A bit more information on your profile please would help us give a targeted answer in future. There may be special circumstances that we aren’t aware of which may mean slightly different advice.

[PMRpro Ambassador]

You probably DIDN'T need to go to 30 or if you did not for more than a few days. You should be able to reduce quickly to 15mg and then slow down. Normally the first approach to that sort of flare would be to add 5mg to the dose at which it happened. If that works it saves a lot of hassle.

Well, obviously you will get off pred asap - but maybe asap in his world and asap in the world of PMR aren't quite the same thing. PMR only goes away in under 2 years for a third of patients. So asap will be somewhere north of 2 years and probably considerably north!

Anyone would think we LIKED being on pred!!!