when to start tapering

[Secondgen]

hi I started on 15mg pred following a new diagnosis of PMR 6 weeks ago. I had an almost miraculous response after 2 doses and I could suddenly walk normally, stand up and sit without help etc. My GP wanted to start tapering at 3 weeks even though I still had symptoms so I resisted. I have a follow up appointment next week to discuss tapering again. I still have early morning stiffness most days although it is minimal compared to before treatment and it can be more severe 2-3 days weekly. Should I agree to commence reducing the dose or not?

[Bcol]

Welcome to the forum. Given you are still suffering symptoms in the morning and more severely during the week I don't think this is the time for tapering. It maybe that that you even need to suggest to your doc that you might need to go up to 20.0mg to clear out all the residual inflammation and then start your taper when it's all under control. Just an extra thought, have you also done your bit to help by adapting your lifestyle to what is a serious systemic disease. The Pred doesn't cure anything and only manages the inflammation. Once the pain has gone/vastly improved doesn't mean you can go back to doing everything you did before.

DL and others will be along later with links to a welcome post and further information.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

As Bcol says, no reducing if you still have pains. Sounds as if 15mg as a starting dose might not be quite enough for you. It isn’t for everyone, neither does all the built up inflammation get sorted within 3 weeks. So you need to discuss this with GP. But as also said, just because you are on medication, doesn’t mean life is back to normal, you still have a systemic illness that needs managing.

This link hopefully explains your illness and how to manage it - a lot of info so please hang on to it and re-read when necessary-

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

Hi and welcome!

After 6 weeks it is reasonable to consider tapering BUT if you still have some symptoms is is questionable whether it is a good idea yet, Had they started you at 20mg you might well be happily tapering by now having done a far more thorough springclean job!

But as already mentioned - do those bad days come after a particularly good day where you celebrated and did a lot more? If you keep a diary you might well notice a pattern of a good day, doing the cleaning and shopping and something else, followed by a bad day where you hurt more and had to rest - followed by a good day etc etc ... Pred isn't a free pass to go back to pre-PMR activity levels - you have to do your part and pace yourself, not only to reduce and manage fatigue but also to avoid developing DOMS, delayed onset muscle soreness, which can now develop in response to FAR less muscle use than you were used to before.

[Potemkin]

Hi - I started on 15mg too but did resist lowering too soon as I felt I hadn't got to where I wanted. Looking back I think I could have started a bit sooner, I was just a bit scared as I had started to get my life back.

For the first month I did no exercise except for walking and really rested my muscles to allow them to recover. This was really hard as I felt so much better and wanted to get back to my yoga and running. A big thing for me is sleep - I tried to have a regular bedtime. This is the one area that still hits me - not enough or bad sleep. As others say - it's important to look at making sure you don't do too much at these early stages. Good luck.

[Polygolfer]

I had a similar pattern to yours and the reduction worked well for me until I went from 5mg to zero - that didn’t work and I then tapered 1mg every six weeks, which was fine. Everyone is different and very few people know or understand what caused their PMR. Because the cause is unknown so is the lasting effect of PMR. If it was a one-off trigger, like a vaccine or something out of the normal then you have a good chance that latter six months or so the underlying reasons for your PMR will be gone, hence a fast(ish) taper could work… but if the underlying cause is more complex, then it could be a longer period on steroids before you are ready to get rid of them. In my case the primary suspect was the mRNA covid vaccine and the secondary suspect was gut lining fault that was allowing unwanted substances into the blood stream. Either way I went on a strict anti inflammatory diet, and all but eliminated ultra processed foods and cut down on alcohol significantly because of its inflammatory nature. In my case it worked, but I’m still not exactly sure what had caused the PMR and what exactly helped. It’s a lottery.

[Secondgen]

so I’ve had my review with GP. They are leaving me on 15mg and not starting the tapering. I’m going to be referred to rheumatology. They have suggested going private as there’s a long waiting list locally. Does anyone have any suggestions of someone who is good with PMR in the West Yorkshire/Leeds area?

[DorsetLady PMRGCAuk volunteer in reply to Secondgen]

Probably best to raise a new post asking about Rheumy -then more will see it. Unless they have saved this post they won’t get notified-with a new post -they will and/or see it in the daily digest.

[Secondgen in reply to DorsetLady]

Thanks, I will

[PMRpro Ambassador in reply to Secondgen]

The best in the region don't do private work and without naming names I can tell you that at least one who does private work shouldn't be let near a PMR patient!!! Be careful who you choose. Someone in York was struggling to identify a good private option - and that included Leeds as it is just down the road.

If it were me I would seriously consider the hour and a half trip to Middlesborough to Mike Plant who is an excellent PMR specialist and was very involved in setting up the NE PMRGCA charity which formed a basis for the national one.

It might be worth asking if any other GPs in the practice have an interest in musculoskeletal problems. It is reasonably clear that you DO have PMR but the starting dose either needs to be raised for a couple of weeks or you need to stay at 15mg for longer until the symptoms have improved further otherwise tapering may be hard.