going back to starting dose

[CarnationLily]

hi- I’ve been on pred for more than 7 years. Had my first flare about 15 months in and since then I have never felt as well as the first year.

Nevertheless plugged away and have reduced many times with the DSNS though never below 6. But this last year had been terrible. Never getting on top of it- feel I can hardly walk sometimes- stiffness back with a vengeance

So I was toying with the idea of going back to the starting dose (20) and coming down quite quickly in increments to 10 then DSNS again. I wonder if anyone has ever tried this and if so with what results? If so how long did you stay at each dose?

[SnazzyD]

Hello, sounds like you could do with a good back to basics overhaul, starting with you looking at your life that you are leading, general health along the way and activity. Did you ever find a specialist to see in London and do you have an overseeing GP that’s worth their salt? From the few posts and no bio, it seems like you have had a past of yo-yoing the dose a lot and you do say you’ve not felt good for a while since the first year. It can end up as being less effective if you keep doing it.

It might be that you have another condition you are dealing with that looks like PMR in some ways. You might need a steroid sparer of different add on medications for example. It may be you are doing far too much and your body can’t cope with that and deal with PMR and reducing. Or your muscles are protesting from strain from activity they are not ready to do and it isn’t PMR, such as the city break, which could have been delayed onset muscle soreness. Pred doesn’t help too much with DOMS. Is there ongoing stress? It could be a cocktail of these things and something has to give, not just the Pred dose.

Has your pain always been the same over the 7 years? Is there a pattern of preceding events before flaring? What have your blood tests been doing? Are you ok generally? Where is the pain?

[CarnationLily in reply to SnazzyD]

Okay I have noticed I don’t do to well in cold or damp. The best I have ever felt since diagnosis is on holiday in a warm DRy country.

However by far my main trigger is stress. Unfortunately since 2020 I have had a very stressful domestic situation. Don’t want to go into detail but not going to change anytime soon.

To get away from my home life from time to time I have to physically exert myself. I don’t drive and getting away for me time involves long walks, bus and tube journeys. However unless it is excessive I’m not sure what part overdoing it plays. When I was first put on pred I had a job and kids at school and as son as I was put on medication I was physically able to do most things. Now I find in a way the less I do - the less I can do.

The pain is mostly in my lower limps / hips but is not always in the same area and is difficult to describe. There are instances where I get dreadful pain and stiffness if I sit for more than about 10 minutes- much before I was diagnosed. I usually have treat that as a flare. I also get the same thing but not as dramatically and with no obvious trigger from time to time. When that happens I’m reluctant to increase- but whenever I’ve tried to go down and power through that it hasn’t gone well.

My GP is okay and is certainly not pushing to get me off pred.

[DorsetLady PMRGCAuk volunteer in reply to CarnationLily]

Sorry to hear this - and stressful home life is obviously not helping your illness, but has any one considered it might be more than 'just' PMR?.. or offered any help for your mental wellbeing?

[CarnationLily]

I should say that when I started on pred I felt massively better than I had for years- because I’d had undiagnosed PMR for a while. After my first flare I never regained that walking on air feeling. However I felt perfectly well on the whole and managed to reduce quite successfully several times. I always stumbled at getting below 7 but I believe this is not uncommon?

Anyway I was plugging away at it and things seemed okay until about 2020 when I started flaring more often. But it was last year that was the killer for me. After overdoing it a bit on a city break ( though I believe it was the journey back not the break itself) but was quite unwell. Then I got Covid - then I hurt my foot quite badly. Knock on effects I suppose.

I haven’t really been able to reduce since then- which is why I thought of briefly going back to the starting dose.

[DorsetLady PMRGCAuk volunteer in reply to CarnationLily]

Think you need medical advice on that thought…. Not sure we can - or should advise..

[PMRpro Ambassador]

Powering through with PMR really NEVER goes well for any of us. It is a fact of life with PMR. Nor does coping with stress AND trying to taper to a lower dose. While my stress continued up to my husband's death I needed a lot more pred to be able to cope and after his death I had a long period that was even worse and I needed even more pred.

My body is a more reliable weather forecast than the local met office - it too hates damp and windy just adds to it. I live in northern Italy - which is generally at least dry and usually not a lot of wind but I will have to face coming back to the UK eventually and I have to say, the weather doesn't appeal!!

However - I suspect you MAY be confusing several factors. The stress isn't helping at all but since that is a fact of life, it must be taken account of. You have had a bit of overdoing it - don't underestimate just what an effect that can have and it can last a long time if it was a bad situation. It is particularly the case with the sort of fatigue experienced in ME when you overdo something - and it has been confirmed the same thing happens in Long Covid and I wouldn't be surprised if that isn't playing a role here too. In Long Covid, it is an effect on the mitochondria, I am sure something similar is going on in PMR fatigue (and a lot of other a/i disorders).

So the question asked "Is this "just" PMR?" is very relevant. I see the appeal of a reboot, starting from the top. BUT that is making the assumption that it is ALL due to PMR and I don't think you can assume that. However - you say you have always stumbled at 7 - and I would say that that is a sign that THAT is the dose you needed and not the 6mg you seem to have settled for. As soon as you get to a dose that is lower than your personal "lowest effective dose" the left-over inflammation starts to build up and you never feel properly well, if you are really unlucky the daily dose gives no respite and you end up back where you started.

Could that be what has happened?

[CarnationLily in reply to PMRpro]

Thank you. Sorry for the delay in responding.

There is a lot of food for thought in your post. Yes I think that could be what is happening

[PMRpro Ambassador in reply to CarnationLily]

I don't expect immediate replies - so don;t ever worry about that.

Yes - I suppose I do tend to provide a good diet of thoughts