Advice on Polymialgia and Prednisone

Hi All,

I am new here and looking for a little advice on reducing prednisone. I was diagnosed with Polymyalgia April this year, the haematologist put me on prednisone 30mcg a day and has left my GP to monitor and reduce my meds, was on 30mcg for two weeks and I asked doc to reduce to 25mcg as I felt I was on too high a dose and felt quite hyper, we agreed that I reduce to 25 for the 1st week, then reduce to 20 for 2nd week and 15 for 3rd week, taking me to 15mcg a day he then wants me to stay on this dose and be weaned off, reducing 1mcg monthly (depending that there are no flare ups in between reducing dose) I am having side effects to this medication, irregular heart beats, sweating, watery eyes, foggy headed, poor sleep pattern, raised blood pressure, plus I am also on Levothyroxine due to having total thyrodectomy in 2009. When I first took prednisone the pains in my body went pretty much the next day and I felt wonderful, I had been given my life back but I am concerned about the side effects that I am having, my gp has ordered blood test for my heart as he thinks I have a heart murmur, which never had before the meds, he also done blood to see that the inflammation has come down.

Just wondering what people's perception are on how am being weaned off this drug. Me personally would stop it tomorrow if I could but I understand that I need it for health reasons. I would be grateful for any advice.

27 Replies

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  • If you are feeling ok on this regime, then you are very lucky. It is such a fast taper that it would have spelled disaster for me as my body needed much more time to stabilise on each reduced dose before dropping again - too fast a drop would send me into a flare.

    Yes, we all get side effects but rarely are two people alike, the individual variations of the side effects are uncountable. There are dozens of side effects listed, but no one gets them all! (Some lucky ones don't get any).

    None of us want to be on steroids but we have little choice if we want some quality of life. My retirement years are not what I expected, but they are mostly good.

  • polkadotcom I am really pleased with the results of taking the meds because I was in so much pain before taking them.

    I have already reduced 5mcg a week ago and ready to reduce again a further 5mcg tomorrow. I have been off work for 3 months and feel ready to go back in the next week or two, just want to be more stable on theses meds.

    I am working with my gp on this reduction and any signs of a flare up, we will increase and take it slower to reduce. I also think it's not just the side effects to the meds but the binders that are used in them that also can make you feel unwell, I personally don't like brand actavis, I had these with my levothyroxine and made me unwell, I was given prednisone made by activas and am wondering if some of my symptoms are due to them, I noticed my gp has given me prednisone made by wockhart I will start them tomorrow and see if in a week or so that there is a difference....oh the joys of having to take medications but I am thankful that my body works without any pain.

  • Hi misschris,

    Nobody particularly wants to be on Pred, but unfortunately it's the only drug that controls the inflammation/pain caused by PMR.

    The side effects you describe are not unusual, certainly at 30mg, which is quite a high starting dose for PMR - 15-20mg is more normal. And yes, you would have felt wonderful at the start, all that chemical adrenaline coursing around your body. You might find that reducing as quickly as you suggest down to 15mg will certainly bring you back down to earth - possibly not in the nicest way! Most certainly you will get withdrawal symptoms at the very least. The trouble is going down that quickly you could easily go past the dose that you actually require. If that's the case, then some or many of your PMR symptom are likely to return.

    However you may be lucky any get to 15mg without too many problems, and certainly from then on the monthly reductions of 1mg at time do sound feasible. But, and its a big but, you have to be aware that no symptoms are returning before you drop down a dose. Regular blood tests are a good way of monitoring things, but symptoms are the key.

    Good luck.

  • DorsetLady Reading your post am thinking it may be a quick reduction, I may speak to my gp and suggest instead of reducing 5mcg a week until we get to 15mcg, to reduce 2.5 a week am sure that has to be better than 5mcg.

    I don't want to put myself in a worse position or have to go back on 30mcg a day.

    I have felt far to hyper, even my sister said to me the other day on the phone that I was talking 60mph. I do feel sickly on it but I do understand I need it.

  • I know, I started at 80mg - and wow that blows your head. Felt I could run 2 marathons one straight after the other - thank goodness that feeling soon left me! My late hubby reckoned I could talk for England in the early days - and he was right!

    But your body does used to the Pred after a while, and at least it gives you the majority of your life back, albeit at a slightly slower pace!

  • If it were me I would try the drop to 25mg immediately - if you feel too awful the first day you can always take the other 2.5mg. If that first 5mg is OK you could try another on the same premise. The sooner you start a reduction the less unpleasant it tends to be and above 20mg you are still in "normal starting dose" territory.

    I was originally started with 2 weeks each of 15/10/5 mg/day and had no problems with the 5mg reductions at all - it was only when I stopped it all came back like a 10 ton truck! You should be OK doing that, even perhaps to 20mg but after that I would slow down to at most 2.5mg and not every week.

    And you should feel a bit better as your body gets used to the pred - I hope!

  • PMRpro i think I just wanted to get down to 15mcg a day as soon as I could, as long as my body was ok with it and then wean off the rossed slowly. Fingers crossed I will not have any relapses, I actually feel very jittery, hyper and foggy headed on this dose, just want to feel more physically and mentally stable while am taking these meds, so am hoping each reduction will eliminate these side effects.

    Something I haven't mentioned which I have come across on this site, am I best ask for my adrenalines to be checked?

  • Once you've been on Pred for 3 weeks at the sort of doses we refer to your own adrenal glands stop working. Normal production of cortisol (adrenaline) equates to approx 7mg of Pred. You don't need to start thinking about your own adrenal production until you get down to about 10mg, and then so long as you reduce slowly your own production will kick back in.

    For some people it's easier than others, but no point in worrying about it until you get to that situation.

  • "Thanks" DorsetLady I am trying to make sense of it all, I am sure I will get to grips with it 😫

  • As DL says - no point until you are down to nearer 5mg. And then you would know if they aren't working - you develop symptoms including increasing fatigue as you reduce.

    There isn't any reason not to try getting to 15mg quickly - but if the pain returns and gets worse from day to day don't ignore it.

  • PMRpro I have decreased today by 5mcg as requested by my gp. I am now on 20mcg daily, next week I decrease again by 5mcg, which leaves me on 15mcg for possibly 15 months, as I think my gp wants me to decrease by 1mcg monthly.

    Just hope that I don't have relapse and as soon as I feel I am getting symptoms again I will make app with gp.

  • Don't plan your taper so far in advance - it only means disappointment when it doesn't work. Take every day as it comes. What your GP wants and what PMR will allow are two very different things and PMR will always win.

  • Just a quickie really my Pred prescribed was Wockhart and I have found them very good. I've been given and offered other brands by the chemist but decided to stick with the same brand.

    Jackie

  • Hi Jackoh The hospital gave me my first lot of meds which were actavis brand, didn't really look at the brand when I got them, concentrated more on reading side effects but got my new meds from my GP which are wockhart, going to start them tomorrow, hopefully some of these symptoms will go 🤞

    Chris

  • Hi Chris, I had all your side effects apart from watery eyes, I had gritty eyes instead! I think in my case the sweating was the one I hated most and oerhaps the insomnia. I also had cramp, fluid retention, sensitive teeth, bruising, thin skin, purpura, scarecrow hair and probably some others as well.

    I cannot imagine not taking pred and going back to the awful pain instead. Presumably you need the pred to stop the pain, I am not sure that counts as taking it for health reasons.

  • Hi piglette what I ment about taking pred for health reasons, was taking prednisone for body pain.

    I am grateful that we have pred to do this, it's just the side effects that make me feel awful. The last couple of days my head feels like it's swimming, my ears continuously buzzing, almost like I've got pressure in my head but without pain. I think my symptoms are more about the brand and the fillers, which I am starting a new brand tmrw. I also get the cramping in my fingers (which I have never experienced before taking pred) I do get cramping in my toes but I have had that before, I even feel like my jaw is tight, under my chin feels swollen, just feel like am a mess at the minute, I am sure once everything has settled down, I will look back and realise I had to go through this to get to the other end.

  • Have you tried some magnesium supplements for the cramps? Pred makes you shed magnesium and it being a bit low is a common cause of cramps anyway - first thing they ask if you go to the doctor with muscle cramp here.

  • I have just started taking magnesium, I did not know that pred meds sheds the magnesium. 🤔

  • I too never had a heart problem and now am on blood pressure medication, my heart is skipping a beat and the BP was all over the place. The Prednisone is the issue but at least we know its not something else breaking down. The BP medication has helped the skipping beat and normalized the BP. I don't like taking more medication but I still need the devil Prednisone to survive.

  • @jevuki

    I too think it's the prednisone that is causing it, I am hoping the more I reduce the meds the less I have irregular heart beats and BP goes back to normal. I have had this problem before with another medication that I linked it to and once off that med my heart and BP went back to normal.

    Take meds and you get another load of symptoms and then you need meds for them....not good really!

  • I understand Misschris but please do not risk your heart while you try to wean do. I rushed the wean the first time and suffered dearly, now I am doing dead slow and still having issues, so I decided to listen to the doctor and take the medication for the heart not worth damaging it. Hopefully it will all be temporary. Good luck

  • Thank you jevuki maybe in a weeks time when I am suppose to drop another 5mcg I will drop 2.5 instead until I get to 15mcg and then reduce very slowly.

  • Hi misschris, I read your posts with empathy...my symptoms were very similar to your experience. My advice from nearly 4 years experience with PMR and pred is simply...listen to your body and try not to get too hung up on the day-to-day fluxuations. Early days on prednisone were roller coaster for me and my close people. I was snarky, jittery, anxious, bitchy and generally a challenge to be with. Those were early days, and symptoms mostly smoothed out, as I learned to go take a short nap/break when I began to feel those ways. Also remember to apologize to loved ones when I was badly behaved. Kind regards, Jerri

  • Oh Purplecrow you sound like me, It is a rollercoaster, you get rid of one symptom only to get others with the meds, feel like am just swopping symptoms grrr! I feel like am upside down at the minute 🙃 My son actually said to me the other day that I was getting on everyone's case and I have took that on board and trying to calm down and understand the effects that pred is having on me. I will listen to my body, especially while I am reducing pred and if my symptoms come bk I will just increase the reduction that may have made me relapse, hopefully that won't happen 🤞

    I have no thyroid and am on meds for that, still trying to get my meds optimal and then I get Polymialgia which is another condition that I have got to get my head around, without these sites I would be lost. There are so many lovely people who share there stories to try and help one another, I would be lost without them.

  • I would just like to correct error in my post regarding my dosage of prednisone, I have posted that I take mcg when correct dosage is mg.

  • Misschris, have you read Kate Gilbert's book about PMR. I highly recommend it as a starting point for understanding this quirky disorder. You will eventually come to understand more about what is happening.

    And as for your son's comment....he needs to read the book also... this is a life changing disorder, and family members need to step up to the plate and help with the day to day needs of running a household. Then, when you are feeling edgy, you can go lie down for a bit, or take your cup of tea to the garden for a brief respite, so you can collect your bits and carry on. Keep us informed, we can help with support for your self care. Cheers, J

  • Thanks Purplecrow i will look for that book because I do need to understand it myself. Then I can educate the family or get them to read the book like you say.

    I am sure you haven't heard the last of me yet! 😉

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