Withdrawal symptoms again

Have been feeling well over the last couple of months so attempting to reduce again from 3 mg to 2.5 mg pred. Into my 3rd week of the very slow approach so this week taking 3 mg on 4 days with 2.5mg for 3 days (alternate days). Had a sore shoulder a few days ago - now gone, no other pain so that's good. What is not good is that I have been feeling wobbly, faint at times, and sometimes dizzy and nauseous. Have to keep sitting down. Very tIred too- not much energy and everything for the last couple of days has been a great big effort.

I have felt like this before when reducing so guess it is normal for me.......just need a bit of encouragement to keep the reduction going!!! Husband just tells me to stop trying to reduce if it makes me feel ill. I want to get off it, and as long as I don't have terrible pains returning feel I have to go through the rest to get to zero. Has anyone else out there experienced similar withdrawal symptoms? Any tips?

19 Replies

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  • If your adrenal glands aren't yet producing cortisol (our natural corticosteroid) efficiently it can cause these sorts of symptoms.

    If you are using my version of the very slow approach you wouldn't do what I understand you to be saying - you would get to alternate days of old/new and then start to increase the number of days of "new" dose between the single days of "old" dose. If you start to feel ill at any point I say to stop where you are until it settles down. The whole idea is NOT to feel ill at any point.

    Your husband is right. You are on a very low dose now - and a lady on another forum told me today her rheumy says that about 1 in 5 patients will have to stay on pred at a low dose long term. Some experts think that part of the cause of the problem is a low level of function of the adrenal glands, not the glands themselves but the endocrine system that controls everything from the pituitary gland.

    Force the reduction to zero and you run the risk of being worse off in the long run. Isn't 3mg for a bit longer preferable to going back up to deal with a problem from trying to get to 2.5mg?

  • Thanks for the reply and the wise words! I am reducing using your method - probably didn't explain well. I think I will stick at 3 mg every day for a while to see if I feel better. Have just phoned for a blood check too - For PMR and thyroid ( I take thyroxine every day and wonder if my reduction in steroid has affected this? ) When I was initially on 20mg then 15 mg a day of steroid my thyroxine dose was halved after blood tests. Previously I had been on the same dose of thyroxine for 15- 20 years. Will let you all know the outcome.

    Also have made an appointment to see my Dr next week for a proper consultation - recently we have been encouraged just to have the phone calls which is not great!

  • Suzie, I used to feel what you describe as "wobbly" throughout my time at the higher doses and always had strange feelings following reductions - like a sort of rebellion by the steroids at being removed - but not quite as extreme as your's, mine mainly being lightheadedness and palpitations. I think at the very low dose that you are taking your body isn't ready to let go of the steroids so remaining on 3mgs for a considerable length of time, perhaps months, may help - hang on to that wise hubby of your's! At 3mgs I ended up almost back at square one, had to increase to 10mg and once back down at 5mg was kept there for almost 7 months by my rheumy. It worked and I was then able to continue to zero in tiny decrements of half a mg with each taper being spread over 7 weeks.

    So my tip is, go back to 3mg if that's where you felt well and stay there for several months. There are unlikely to be any side effects at this dose, and if your body is not ready to reduce further you could just be risking another setback.

  • Thank you for support - will be going back to 3 mg for a while. See my reply to the pro volunteer for more thoughts

  • Hi Suzie,

    I'm stuck on 5mg. Been on it for 5 weeks now. I tried to go to 4.5mg last week and after only 2 days both my knees felt as if they no longer fitted my legs - very painful, and I felt very weak. I've been much worse than this in the past. 2 years ago my knee and elbow joints were very painful after a drop. Had to wear elastic bandages on all of them till I went up on the dose. After a few weeks my

    joints were o.k. Ibuprofen came to the rescue.

    I've been on pred for 3.5 years and my PMR has gone, but I'm finding it very hard on these low doses. Guess my adrenals are not up to scratch.Will try one quarter mg drop next time.

    We all want off pred, but I'm not worrying too much - I believe that under 5mg pred does very little damage - prob none at all. Just props up the old glands.

    What I would like to know is how to get my muscles back. I used to have fabulous bicepts - they seem to have disappeared. Flabby arms, ugh!

    Pats xxx

  • Sorry to hear of your pain. I am lucky in that respect as my pain is fleeting now.

    Have just made blood test appointments, and Drs appointment for next week - will let you all know the outcomes. Will be sticking at 3 mg for now until I feel better.

  • How do you "know" your PMR has gone? As long as you are on pred you cannot know as even a tiny dose can be controlling the inflammation - that is the whole point of staged reduction, to find the lowest dose that controls the symptoms. A lady on another forum came off her pred in May because she was told her PMR "has burned itself out" - and the symptoms are back. Another lady was down to 2.5mg every third day (enteric coated pills can't be cut) and within weeks of stopping - PMR was back.

    I (and others) believe that the very slow reduction I advocate avoids "steroid withdrawal" pain - it isn't PMR reappearing, it is the lack of pred all of a sudden the body doesn't cope with. But even with the "dead slow and almost stop" technique there will come a point where you have pain if the underlying autoimmune disorder is still active. I know a couple of people who have managed to reduce to zero in a couple of years - but they really are the exceptions. Of course, a forum like this is likely to comprise the people with more difficult journeys but even so, the majority fit with the figures quoted in the literature of half taking 4 - 6 years to get off pred.

    There is no reason not to do light weights to tone your arms - just not too heavy and not too many reps.

  • Hi PmrPro,

    In reply - well, theoretically, I could still have the tendency to waken up my PMR. After all, I'm carrying the illness in my genes and, if I thrash my adrenals again, as in the 3 years previously to me getting it originally, then it might re-emerge, but Boy am I going to be careful. My father had PMR and kicked it in 2 years, but took it real easy for the rest of his life. The most energetic thing he did was lift a pint of beer in the pub and he lived to be nearly 80.

    I met a wonderful GP in Wales when I had a bad flare a year after getting PMR. He put me on 30mg and the dose knocked it for six.

    He gave lots of advice and said that he liked to keep his patients on a maintenance dose of 1mg indefinately when they had recovered - to prop up the adrenal glands and prevent a flare.

    There are no 'golden rules' concerning the management of PMR/GCA, but we all have to play it by how we feel. When I wake in the morning, I can get out of bed with no pain or stiffness. When I was first ill I couldn't even sit up and was bent double when I tried to walk, and I was so weak that I couldn't even carry my own small handbag. There was no way that 5mg of pred would have done a thing for me - I was given 30mg starting dose and was diagnosed by a specialist as having 'classic PMR'.

    The pain I have now, I'm almost certain, is due to damage to my tendons and ligaments - it comes and goes depending on how much I have been lifting and is in my joints, not my muscles, but with time and care, I hope I can regain my health.

    I hope to be almost off pred in 4 years, but maybe I'll hang on to that 1mg and also keep a nice cache of steroids nearby ------ just in case.

    The weight regime sounds good, but gently does it. Thanks.

    Pats.

  • Suzie, I have been experiencing similar symptoms while trying to reduce from 4.5 to 4 mg. My Gp didn't know why I was feeling very wobbly - but my blood pressure had dropped a bit so she halved one of my blood pressure pills. I returned to 4.5 mg and felt fine again for 2 weeks so am trying again to reduce - I have got a bit further this time - on my 2nd consecutive day of 4 mg today. I am still feeling a little wobbly but not feeling as if I am going to faint. I think the key is to not to push yourself too much and to make the reduction very slowly.

  • Yes I think you are right. Husband doesn't really understand how I can be fine for a while then feeling I'll again. It is not really me to be sitting and lying down a lot and he finds it confusing however much I try to explain - he won't read about it either or watch a DVD before someone suggests that! Shame there isn't a TV program about it as that I could get him to watch!

    He is actually a very kind man and allows me to rest and he will do all the jobs around the house - just doesn't cope with my ill days!

  • Yes Suzieh, What you say is to be expected I'm afraid, but all will be worth it in the end. I am now in Club Zero after a couple of years on pred having lost 1eye with GCA. But life goes on and we learn how to get along! Keep up with the slow reduction plan and good luck. rsymck

  • Thanks for reply - yes I do wonder if everyone has to battle to get to zero. Others on here suggest I maybe need to stay on a low dose? Who knows? I am going to see my Dr next week for a good chat about it all. Hopefully she can reassure me too or suggest some other tests that can work out what is going on

  • Pre pred I had terrible PMR pains but none of the other symptoms eg tiredness, feeling faint or wobbly so I suppose I blame them all on pred withdrawal. I need to talk to my dr before deciding to stick with a 3 mg dose or try to get off it altogether. Do you feel normal now? How long did it take after your last dose of pred? Trouble is we are all getting older and I suppose aches and pains occur anyway along with days feeling tired. I just don't like the days when I feel sapped of energy and ill !! It can't be right that sometimes my mum and dad (in their 80's) seem to have more energy than I do!

  • Hi i am glad you put this post on because the replies have been really helpfull to me, like you i am coming down the steroids and now down to 5. and 4.5 diff days, but i notice some of the feelings people have and as i have had 2 hips and a knee done because of the steroids i didnt realize that things like knees not fitting legs and having light heads may be down to this as i am still on lots of tramadol and pregrablin as well.

    One thing i am fed up with is every time i go to Rhuematology i see someone different who tells me something different, i think i find more out here. hope it gets better soon.

  • I am on 5mg Pred and have been for almost 2 years and will be for ever. I am steroid dependent as my adrenal system is not working now. Bovvered? Not me. No side effects at this dose and no worries about reducing further which in itself was a big weight lifted from me.

    Not that I am saying everyone should stay at 5mg, far from it. But if you find out you have to it's really no big deal.

  • Hi Catie,

    I remember that your adrenals are 'out'. Can I ask, does 5mg do the trick if you exert yourself. The reason I ask is that the 5mg dose is supposed to be equal to 20mg of what we can make naturally. I believe our adrenals can make up to about 30mg if needed, 7.5mg of pred.

    Pats. x

  • Pats, that's something that I've wondered myself...........but in these last two years I have been subject to most things which naturally occur in life and so far no problems. Oh, including an arthroscopy on my knee and several tooth extractions.

    I have to assume that my adrenals can make a limited amount if only to fulfil the 'fight or flight' necessity, but I don't think I'll go out looking for bulls in fields to annoy!

  • Hi All, my GP has asked me to cut down from 25mg to 12.5mg, I tried this over this weekend just gone and have been waking up with really bad headaches in the back of the neck and from the temples over the top of the skull. Soon after breakfast (60-90 mins) the pain eases and the only thing is I have had the pred. So I have now gone back to 25mg, problem solved.

  • Hi rory61

    The advice given by those who have battled with reducing pred is 'no more than 10%.' The drop you made was massive and I'm not surprised you've had pain.

    My experience was the drop from 25mg to 20mg went OK, I did it in one drop, but the teen doses proved more difficult - I could only reduce by 1mg every 3 weeks or so, and that worked as long as there was nothing in my life that was at all stressful - then I held the drop till my life was more easy.

    Stay on 25mg for a week or so until you feel OK then you could try a drop to 20mg - if you feel unwell for more than a few days then increase by 2mg say.

    You must listen to your body and act accordingly. Your GP is worried about the side effects of pred. He's forgotten that PMR/GCA are more likely to flare in the first 18 months - perhaps he doesn't even know that, but, as long as you obey the rules and follow the guide lines on diet - no added sugar and salt, no refinded carbs, lean meat and plenty of fish, and drink plenty of water etc, and rest and put your feet up when you feel worn out, you'll get well again I'm sure.

    Good luck,

    Pats.

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