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Withdrawal symptoms on reducing pred from 10 to 9 mg

Posted , 10 users are following.

jan21306
jan21306

I started reducing prednisolone from 10 mg to 9 mg 4 days ago and am finding that my whole body is tingling.  Am aching a bit and have started to get fatigued again.  Has anyone else had this tingling sensation?   Is it a withdrawal symptom from the pred?  I would be grateful for any advice. 

 

0 likes, 32 replies

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  • EileenH
    EileenH jan21306

    Posted

    How have you reduced? From every day 10mg to every day 9mg overnight so st speak? If so it could well be withdrawal symptoms - we have always felt tthat steroid withdrawal starts immediately and improves over the next week or two. Some people are very sensitive to reduction in dose, others less so.

    In the 4th and 5th posts on this thread on the forum:

    https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

    you will find my version of a very slow reduction programme that I and quite a few others have used to avoid this withdrawal discomfort. A similar concept is being used by a consultant in the NE and he also finds it works well.

    You don't say how long you have been on pred (sorry if you have said in earlier posts but I can't remember all the posts I see). The longer it is the more sensitive many people become - but here it does sound more like that than that the new dose is not enough for the PMR symptoms to be managed. 

    • jan21306
      jan21306 EileenH

      Posted

      Thanks Eileen.   I have only been on pred for about 12 weeks, but because of the side effects i am getting my doctor wants me to try and get to a dosage where i can stay for a while.  I think i am now getting side effects and withdrawal symptoms at the same time.  My whole body shakes and tingles all day and my muscles twitch and i am exhausted but dont sleep due to palpitations at night.  I dont get them during the day.   The good news is that i am not in pain !  I suppose every cloud has a silver lining !!  I wish i dared try the brandy or armagnac !!
    • EileenH
      EileenH jan21306

      Posted

      Well yes - that's what he SHOULD be doing but he can't go about it with a sledgehammer, he might as well say stop it altogether straight away and suffer the PMR.

      The reduction I suggest COULD be used from the starting dose immediately but you do need to hang about a bit at various doses because otherwise you will overshoot the dose that you will need to stay at and never know what it would have been. There is no point being on a dose that doesn't control the symptoms - that way you have all the disadvantages with none of the benefits and - as I say - might as well say I'll put up with the PMR. 

      There, it dependson how bad it is - I had it mildly for 5 years with no pred because it was not diagnosed until I ended up immobile and in agony. It was uncomfortable and quite hard work but it can be done. I was a freelance translator working from home so I did an aquaaerobics class every morning in a warm pool, often followed by a short spell in the sauna or steam room. Having done that I was more flexible which allowed me to move more - the more you can move the better it becomes in an improving spiral. But I had to start again every morning. Some people found using an electric blanket BEFORE getting out of bed and a warm shower allowed them to get moving better. It wasn't until I got bursitis pretty much all over that I eventually went onto pred (took 6 months to get there too).

      We suspect that a VERY good way to deal with PMR is hydrotherapy in a nice warm pool - but getting that in the UK if you haven't got RA is pretty much impossible! Has your doctor thought of trying a different form of pred? I have been on 4 different sorts and only had awful side-effects with one sort (Medrol), prednisolone as used in the UK was OK, the weight I had gained before diagnosis redistributed to pred-associated places (midriff, back of the neck and face) but not much else. With the form I am on now I have lost 16+kg in weight, the muscle wasting has gone and my skin and hair are back to normal as is my cholesterol level - Medrol side-effects all disappeared. 

      Your GP might be willing to try Lodotra for you - that is what I take now - but the 2 people I know who take it in the UK are getting it privately. It is approved for RA though so can be got.

    • jan21306
      jan21306 EileenH

      Posted

      Hi Eileen.   I will ask my doctor about Lodotra.  I didnt realise there were other sorts of steroid.  Does that mean you can transfer directly from one to the other?  I shall google Lodotra to see what sort of delightful side effects there are !!  My face has taken on the appearance of achipmunk and my jeans are gettinga bit tight!!   But i can put up with those, its the internal ones that i cant cope with.
    • EileenH
      EileenH jan21306

      Posted

      There are a lot of different corticosteroids but prednisolone, prednisone and methyl prednisolone are the substances used for PMR because of the length of time they work for. The point I was making is that someone doesn't always react the same to the different options. The possible side effects are all much the same but Lodotra in particular is thought to have fewer since you take it overnight and it is thought a lower dose is needed as a result. It certainly has the fewest side effects for me and Medrol was just awful. Other people have no problems with Medrol - I was unlucky.

      A few people have tried taking pred at night - it meant their side effects happened overnight and the days were OK. Everyone is different.

  • Oregonjohn-UK
    Oregonjohn-UK jan21306

    Posted

    Let it settle, it takes time for the body to get used to the reduced dose. and you are very close to what the body would normally produce.  I get some 'funny' effects shortly after reducing, and if it becomes too much just go up half a mg for one day then down to 9 and follow this pattern for a week or so.  Best of luck!

     

    • jan21306
      jan21306 Oregonjohn-UK

      Posted

      Thanks Oregonjohn.  I think the worst thing is knowing that there is no alternative to reducing the pred, as we cant just stop using it as we can with  most other drugs.  Will try the going up by half for a day.  Thanks !
  • davidmelville
    davidmelville jan21306

    Posted

    Hi Jan21306, I hate this part of reduction that tingling feeling, sort of like having a temperature for flue but not having it. I have to say that whatever I have done to stop it has failed but Eileen and others are right . . . slow the taper. Her recommended method does work and will stop it. The quickest cure for me is a (big) spoonful of brandy but that may not suite all! Then back to the slow, slow, taper.
    • EileenH
      EileenH davidmelville

      Posted

      Haha - are you related to MrsK? Brandy Queen of PMR and GCA! Her answer to many things is a small glass of brandy - which she claims she hates ;-)
    • davidmelville
      davidmelville EileenH

      Posted

      Au contraire . . . From a child a teaspoon of brandy cured all ills from upset tummy to 'whatever you like'. Still do use it as an excuse!

      Mind you I got my cum upance with Naproxen, a most unacomadating little invention! . . . .😀

    • EileenH
      EileenH davidmelville

      Posted

      Ah - MrsK's answer to Delhi belly is a mixture of brandy and port (if I remember rightly). Now I wonder how a properly flambeed meat dish (for example) teamed with my neighbour's onions poached in portwine would do...
    • davidmelville
      davidmelville EileenH

      Posted

      Styrup Cup! Every huntsman has a hip flask full to be emptied by end I'd day . . . It's a kind of glue to keep you in the saddle but if it fails it still works as it numbs the pain . . . .

      i think I like alternative medicine!

      i do have a serious answer but that would be boring!

      no seriously . . . . . . . .

    • lodgerUK_NE
      lodgerUK_NE davidmelville

      Posted

      Just to let you know, I survived on brandy as a painkiller for over 5 years whilst I had GCA.

      I remembered that when we were ill as a child being given a teaspoonful of brandy when ill. 

      I also was told by my Grandad that an old barmaids cure for d & s was to mix a small measure of brandy and a small measure of port, hold your nose and throw it down (it tastes horrible), repeat in two hours.  It works. 

      Brandy was invented by Medieval Monks as a Medicine.   (No it was not Cadfael)

       

    • jan21306
      jan21306 davidmelville

      Posted

      Its always good to know that someone else has been or isgoing through   something similar.  I have had to give up alcohol for the moment, otherwise I would have tried the brandy like a shot !!  
  • marykay62062
    marykay62062 jan21306

    Posted

    Probably withdrawal symptoms from lowering your dose of pred. I have been on pred for 1 year now and reduced to 11 about 1 month ago which I take just before going to bed due to daytime dizziness which took care of that. I have the tingling about 3 hours before my dose is due which is annoying. There is constant muscle fatique now but no pain to speak of. I do hit a wall where I am so tired that I could curl up and die after doing too much and a nap takes care of that usually. Guess we are all different and I will stay on the 11 for another month. The Brandy idea from Daavid Melville sounds great though doesn't it? Guess this really isn't any advice but just sharing my own experiences. Best of luck to you.
    • jan21306
      jan21306 marykay62062

      Posted

      Hi Marykay.  Thanks for sharing your experiences.  It all helps to know you are not alone.   I agree about the muscle fatigue as well and hitting the brick wall!  Good luck to you !
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