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

10 Replies

  • 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.

  • 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.

  • 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!!! 

    • 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! 

    • 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.  

    • Posted

      Thank you so much for your helpful advice and to everyone else on this forum - you have all helped enormously in understanding pmr. I have decided to heed all your advice and going back up to 5 - see how it goes and then use the dead slow taper. Fortunately my GP has given me a free hand to handle my does from now on. My heart goes out to all of you who have a rough time with this rotten illness.
  • Posted

    Unless you have some terrible side effect from pred, what is the rush? Average PMR last 4-5 years. Only 25% get off pred in 2 years with  high probability of relapse. As you know pred does not cure PMR, only manages the symptoms. So the process of reduction is determine by how active your PMR is, not how much you can taper. If you reduce too far, inflammation will accumulate and you will eventually have to increase the dose.

    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.

  • Posted

    Frit, you are at a critical point, I have read what others have said and agree. Slow and easy it is not a race. Reduce by the small level you can using DSNS method to taper. Always being aware of a flare is bad! Good luck on the rest of your journey, try to smile and think positive. I believe it helps! ☺️
  • 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!

    • Posted

      Thank you so much Eileen for sharing your knowledge, explaining the issues so succinctly and your sound advice. I have gone back up to 5mg and will stay on that until I am confident that shoulders are back to normal and use your slow method of reducing. I do appreciate how fortunate I am that PMR has not attacked me in any vicious way and my heart goes out to all of those who suffer greatly. This wonderful forum has helped enormously .

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.