Feels like a battle royal going on between pmr, adrenal glands and pred reduction.
Posted , 15 users are following.
I was diagnosed with pmr in May last year and so far have been very fortunate to have reduced from 20mg to 5mg pred without any difficulty. I am now in the second week of a reduction to 4mg and am feeling fatigue and stiffness. I do not have the pain but the stiffness in both shoulders feels exactly as it did with the pmr. I do exercise regularly and am confident it is not muscular. I would welcome any advice please - is this the start of a flare up? Or should I hold on a little longer before upping my pred? Like everyone I am anxcious to get off the medication asap! Many thanks.
0 likes, 10 replies
RD_Swede Frit
Posted
When I was on 5mg I stayed there for a year due to fatigue and then I continued with 0.5 mg. 5 mg is a low dose and yo don't have to rush. Use theDSNS method for refucing. I have been off pred for over 9 years.
BettyE Frit
Posted
Your reduction from 5 to 4 is 20%, double the recommended proportion if you did it in one fell swoop. Many of us get a glitch around the 10mg. level so you have done very well so far. If it were me I'd not let the pain go on for too long. You are on a low dose and have got there in a year so pred. side effects are hardly a consideration. Many of us have found that we had to reduce unbelievably slowly when we get, as we think, almost to the winning line.
Not qualified to prescribe, of course, but in your place I'd see if going back to 5 makes you comfortable and then reduce in tiny, tiny amounts. I'm sure others will be along with their views. Hope it all goes well.
freda07782 Frit
Posted
Hello Frit, I too was diagnosed last year in Jan with PMR and was put on 20mg Pred. I'm now down to 2mg and expeincing stiffness in both my legs when I first get up. This goes as I move about but I'm aware of my limitations. For example I get tired when shopping, back aches a little, can't do the same gardening jobs as I used to do. I sometimes take Pacaetemol in the afternoon and with this I'm comfortable. BUT, I'm afraid to reduce by the .5 I've been doing as I don't think I'm ready yet. Like you I don't want a flare up. Up to this point I've felt ready to try the reduction but I seem to be stuck at 2 mg. My Rheumy told me way back I'll probably be on Pred for the rest of my life!!!! I'd like to prove her wrong but who knows. Don't know if this helps you but thought I'd share my experience. It is difficult to know sometimes how far we can push our luck!!!
EileenH freda07782
Posted
Your rheumy is a misery guts! He can't know so why say that? Someone said the other day a friend with PMR has just got off pred after 10 years of PMR!
Anhaga freda07782
Posted
Cautionary tale for you: I got to 1.5 last year. When I went for regular dr appointment she didn't renew my prescription but suggested I use up my remaining tablets "and see what happens". I did happen to have enough on hand to do dead slow reduction to zero, and I was feeling well, so I thought I'd give it a shot. Tried once to go to 1. Felt a bit achy so back to 1.5 for a couple of weeks, then tried again. I kept sort of pushing it, although by now I didn't have enough tablets at this rate to get to zero. Finally I gave up, and went back to dr's office. There was a locum there who had lots of experience with autoimmune disease, having MS herself. She gave me a prescription and suggested I go to 5 for some period of time (I couldn't bring myself to do that). Anyway what happened in the end was I saw my own doctor and told her I'd been at 3 again. She actually asked me how I was feeling (don't think she usually asks that). When I tearfully confessed not so good she gave me a repeating prescription for 300 1 mg tablets and told me to take what I needed. Had to take 7 for a few days (my last certain good dose was 2, this was 5 more than that). Got fairly quickly back to 4 and then back to using dead slow taper. I am currently at 2.5. This is nearly a year of having gone backwards, all because my doctor and I pushed our luck. I think we've both learned a lesson. If I hadn't tried to keep tapering last summer I probably would still be on pred but I wouldn't have had several months of increased dose.
Frit Anhaga
Posted
nick67069 Frit
Posted
You have reduced very quickly form 20 to 5mg. I was personally stuck around 5 mg for more then 6 months, before I could reduce further. My suggestion to you is to pause, go back to 5mg and try again reduction in a month or so.
My second suggestion would be to use smaller steps, and next time try to use 0.5mg and also use DSNS ( slow taper) method.
You will find that reduction at lower dose takes time and patients. If you are not careful, you will end up with a flare and then you will have to increase dose to much higher level and start all over.
Michdonn Frit
Posted
EileenH Frit
Posted
This is the body telling you it isn't ready to reduce any further - you are not reducing relentlessly to zero, you are reducing to find the lowest dose that gives the same result as the starting dose did. It sounds as if you are there 5mg. One of the top PMR rheumies in the UK likes to keep his patients at 5mg (if they can get there) for up to 9 months before continuing the reduction and finds it helps a lot.
As you say, everyone wants to get off pred - but you are now at a dose that is less than your body makes naturally in the form of cortisol (pred is just an artificial version). Whether you are taking 5mg or 4mg, your body is topping it up to make the amount your body needs to function, at least, you hope it is! That takes a while to settle down so there really isn't a rush.
And whatever you do, you will need pred as long as the underlying cause of the PMR is active, on average that is 5.9 years! If your body isn't ready to reduce you won't.
https://www.medpagetoday.com/rheumatology/generalrheumatology/66912
Some people DO manage to get off sooner - but there is no way of knowing in advance. You find out by reducing until you get stuck. Then you wait a couple of months and try again. It doesn't mean you won't get further, just not yet!
Frit EileenH
Posted