I was diagnosed with both PMR&GCA in September 2014 I have finally managed to get down to 2mg of Prednisolone.

[Sandybo]

I would like some advice please. Today I took my first dose of 1.5mg and have worked out that my Last dose of 1mg should be in the middle of November when I will start on half a mg, I’m not too sure how to proceed with that dose, can someone advise me please. It’s been a long journey with other health problems developing on the way ( Duodenal adenoma in July 2017 then a Leaky Mitral valve in my heart in June 2019) I am lucky enough to be feeling fairly well, a few aches and pains in the morning which usually pass after an hour or so. My consultant is going to phone me on the 3rd of July so I would like to be able to tell him when I could be off Prednisolone! Thank you in anticipation. Sandybo

[MrsNails]

Morning Sandybo

Dorset Lady will be along shortly & l think she will have the best advice for you, having achieved this.....

Kind Regards

MrsN

[Mary63]

I know whenever I have planned reductions months in advance I have never been successful, and have just been disappointed....

Maybe you should just play it by ear and try to reduce every few months as long as you feel ok and assess how you feel. You are on a very low dose now. Or is your doctor pushing you to stop taking pred?

Re getting from 1mg to 0.5mg my plan if I ever get to that stage (I think I seem ok on 5.5mg. Started on 20mg in January 2016) is to try with my pillcutter to cut 1 pill into 4. If it crumbles I will try to estimate what a quarter of a tablet might be. Can’t do that with coated tablets obviously.

If you doctor needs you to tell him when you will have stopped steroids you could always give him/her some arbitrary date, but we all know that might not be what happens!

All the best!

[DorsetLady PMRGCAuk volunteer]

I did all my lower reducing using my slow taper - attached.

healthunlocked.com/pmrgcauk...

Almost all the time I could go straight p from one taper into the next one without a problem. The last one from 0,5mg to zero did take a little longer - I used the 7week one.

A couple of points -

some people take it slower by either using the ultra long one, or going 0,5mg to 0.25mg to zero.

Don’t taper just because it’s on the calendar- you have to go by symptoms - or rather lack of them - and how you really feel.

Don’t rush to tell your Rheumy when you’ll be off Pred - you don’t know until it happens. And if he’s any good he shouldn’t be expecting you to give him a date - you, and he, may have one in mind - but it’s best not to!

You could end up disappointed - it’s not an exact science...no point getting to zero if PMR hasn’t gone into remission...it will just flare up again.

[Sandybo in reply to DorsetLady]

Thank you DorsetLady, I just didn’t think about slowing right down. Thank you for your advice, I’m taking it on board together with the others who’ve replied to me. Sandybo

[MrsNails]

Sandy, have you listened to Prof Dasgupta’s Webinar, you might find it very interesting what he says about the final 2/2.5mg of Pred

Here’s the link

healthunlocked.com/pmrgcauk...

[Sandybo in reply to MrsNails]

Many thanks MrsNails, I am going to listen to Prof Dasgupta’s Webinar later this evening, I’m grateful to you for sending me the link. Sandybo.

[DianeA1]

Hi, I am no expert, but have used DorsetLady's taper plan since the beginning (Jan 2018).

Much to my dear Dr's dismay, I am reducing in smaller quantities, but we agree to disagree without any discord.

My spreadsheet record says that from 12.5mgs down to 4mgs I reduced by .5mgs.

From 4mgs to now I am reducing by .25mgs.

At this time I am reducing from .25mgs to zero, still using DL's taper plan (thanks DL!!)

A couple of times I have felt it necessary to increase by 3 or 4 mgs for a short time to quell discomfort.

I plan one month in advance and take it day by day. Little by little!

Good luck!

[Sandybo in reply to DianeA1]

Thank you DianeA1, I am taking on board all that you have listed to me, together with advice from the others as well.

[PMRpro Ambassador]

Truly - take it one month at a time. Otherwise there is the pressure to ignore signs from your body.

One of the top PMR/GCA experts in the UK keeps his patients at 2mg for a VERY long time, even for life. It is better than a relapse and in my over 11 years on the forums, not just this one, I have met enough people who got to 1mg or even to zero and within a few months it all went pear-shaped.

[Sandybo in reply to PMRpro]

Thank you PMRPRO, I have been happily surprised that I’ve managed to get down to 2mg and guess I was obviously wrong in thinking if I’d got this far the rest would be a ‘piece of cake’. I am so glad I posted this morning and to have got the replies that I have, I will go back to 2mg tomorrow and see how it goes, maybe posting again in a month or so to be advised further.

Also I can now prepare for my conversation with my rheumy who has always been very supportive, 🤞 he will be again. Many thanks, Sandybo.

[PMRpro Ambassador in reply to Sandybo]

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