What Next

[Libs66]

I was diagnosed with PMR last August, put on 15mg Pred. All went well till started to slow taper. Pains back. So put myself back to 15mg. Doctor was not happy and told me to continue tapering and referred me to rheumatologist. He said, without any examination or blood tests , that in 2016 I had an MRI scan which showed some compression in base of spine. He doubted I had PMR and sent me for another scan. If it had got worse he said they could operate. I was to continue tapering 1mg a month. I received a letter from him saying the scan showed no further deterioration and so no further action would be taken. He told my doctor to continue treating me for PMR.

I am now on 3.5mg still having leg pains and arm pains and really don’t know what to do next. Blood tests at the doctors come back normal. Sorry for the long speech but any opinions would be welcome

[DorsetLady PMRGCAuk volunteer]

What a muddle!

But now it’s finally been decided you do have PMR, the your reduction has obviously been too quick.

I see 6 months ago you decided to go back up to 15mg after unsuccessful drop to 12,5mg.....and that you were considering a rise to 20mg...did that happen?

Just because your bloods are normal that doesn’t mean everything is under control.

As your PMR is less than a year into diagnosis then you need to be on a much higher dose than 3,5mg - can you remember the last dose your symptoms were under control? If so, suggest you go back to that dose or just above for a week and see if things improve. Then come back and take further advice on tapering.

[Libs66 in reply to DorsetLady]

Hi Dorset Lady, yes it has been a bit of a journey and it just goes to show how difficult this PMR is to diagnose. Yes I did go back up to 15mg, then had a chat with my doctor about maybe going up to 20mg as 15 did not seem to be working as it did when first diagnosed. She flatly refused this and said I was to continue to taper. That was when I was sent to the Rheumi. If I remember I seemed ok on 10mg back last year, so may try that for a week then choose a slow taper. I must agree, it all seems a bit quick. Thank you for your advice

[DorsetLady PMRGCAuk volunteer in reply to Libs66]

You have good advice from others, so I won’t repeat- but you plan seems good to me..

[jinasc]

Your medics are rushing you - pred does not cure - nothing does, the aim is for the pred to reduce the aches and pains to a level you are comfortable at. All reductions should never be more than 10% at a time and not weekly. Look and download the Tapering Plans which are on the Pinned Posts, right had side of this page.

Some people's markers (ESR and CRP) are never raised, you have to go with the medical symptoms.

PMR affects the oxygen supply to your muscles........do not over exercise, however you must do some and walking, aqua aerobics, Pilates etc

August 2019 to now and down to 3.5mg is a nonsense - I wish some GPs would get there heads around that pred, whilst powerful, is absolutely necessary and in some cases without pred, they would not be here.

If I were you, which I am not, I would up the dose to 10mg and see if you are more comfortable. Download the tapering plan you would like, if it is DSNS, send me your email address via a PM and I will send you a copy of some research into that plan. You can then wave it under his/her nose. Knowledge is power.

[Hidden]

I was at 8mg about the same length if time that you are into and flared and had to go back to 14/15 after 2 drs appts. Initially at the first visit the bloods were still ok...but by the second visit because I felt rubbish they were higher than at the start. They need to recognise the 2 key indicators of relapse.....too higher starting dose (over 25mg I think) and too fast of a reduction. You are showing the same things I did which Dr upped me from 8mg to 12mg. Now I always use the plus 5mg for a week then back to the dose that I last felt better at.

[scats]

If only GPs realised that reduction is not as simple as that, it's not a straight line. I have had PMR now for about 4.5 years and this month for the first time I have managed to get below 10mg. You realise I do have my fingers crossed when I say that and it is only 9.5mg, but it's progress.

I have been back to 15 three or four times for various reasons, usually stress related, husband's illness, son's breakup etc. It was what my body needed at the time. Dose always has to be determined by symptoms or the inflammation will build up again. Good luck to you on your journey.

[Yellowbluebell]

you have had a very fast taper. As a comparison I was diagnosed in sept 2018 and started on 15mg. I have had a very easy time tapering and only had a couple of self inflicted issues like accidentally under dosing my self for a week yet i am only at 8mg 21 months later. If you are having pain then you have gone below the ideal dose. As the others have said you need to go back to a dose where you know you were ok. YBB

[PMRpro Ambassador]

The median time to get to 5mg is 18 months - that is for half of patients to get to 5mg. The other half take longer so 9 months to be way below 5mg is ridiculously fast. It is fine IF IT WORKS. When it doesn't - it isn't fine.

If you were pretty good at 10mg try it again and see how you get on. It may not achieve the same result - messing patients about with making them reduce to far too low dose often means they need higher doses later. But that is the place to start.

[Julesster84]

I started at 10mg and managed to get to 3mg and then flared big time. I want to get my body right so now I am just taking my time. I am at 6mg and zero pain unless I over exert, which is a bunch now that we are inside the house all the time. if you need anything just reach out. we can help each other so much during this scary time.

[Hidden in reply to Julesster84]

Try switching the idea from "managing to get down" to "I tapered to x but PMR still active". It seems a little thing but it's a world of difference in reality.