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Twitching lip

Posted , 8 users are following.

Jersey_Royal
Jersey_Royal

Hello All on this wonderful website,

I have GCA/POLY for nearly 3 years,  I am down to 2 pred a day and have been for the last 5 weeks, and felt ok,

my GP says I should be finished with pred by end of summer?  but that frightens me, the pred are like my comfort blanket, as I am scared it might return.  But would be great to come off them.

anyway, I just wondered if anyone has developed this slight nervous twitch I suddenly have, it seems to come and go, have had it on and off for 3 days now, but have had a few stressful exhausting days, perhaps it's to do with that, I thought I might be getting a Belles Palsy (spelling)??

but don't think so?????

Jersey Royal 

0 likes, 22 replies

22 Replies

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  • beatrice74480
    beatrice74480 Jersey_Royal

    Posted

    Just remember to taper off pred bt
    • beatrice74480
      beatrice74480

      Posted

      Was just saying do remember to taper off pred by .5 daily and not 1mg Docs don't realise that is important to us. I was taking 1 daily and Rhuemy says stop its doing nothing for you and I had a bad flare and back to 3 daily,now 2.5so hoping to continue, good luck . When we're u diagnosed ? good luck.
  • lodgerUK_NE
    lodgerUK_NE Jersey_Royal

    Posted

    I know this sounds odd, but how old where you when you started on pred?

    The reason I ask is that if your GP is insisting on you coming off pred, before you do so, ask for a Synathcen Test to see if your adrenal glands are up to speed.   Sometimes when you are older they may not be fully functioning and you need to know.

    I had one after having GCA and being of pred for 5 years.  The Endochronologist did the test and everything was fine.  I then stopped the pred, but hung onto some pred, just in case the GCA came back.  It has not and I am now 4 years pred free.

    • Jersey_Royal
      Jersey_Royal lodgerUK_NE

      Posted

      Hello Lodger,

      I am. Very young 72!!!!!!!! If you know what I mean

      I've been asking just to have a de a scan for the past year, but they won't so can't see them doing a synth an test, but that's really interesting, O have never heard of that before.

      I started on 60 pred early Novembet 2012 

       

  • EileenH
    EileenH Jersey_Royal

    Posted

    That is good to hear - and 2mg is such a low dose it's not going to be doing much in the way of side-effects.

    However - though not wanting to be a party pooper - on what grounds does your GP assume that because you are fine at 2mg you will also be fine on no pred in what I would class as just a few weeks? There have been a few people on 1 or 2 mg whose doctors have persuaded them to come off pred too quickly and who have had flares within weeks or a couple of months at most. Experienced rheumy nurses have said that even 1mg can really be doing something.  Even a few doctors take that view. Keep on reducing slowly, maybe even more slowly now - 1/2mg is 25% now, will be 50% when you get to 1mg, and don't let your GP rush you. A drop from 2mg to zero in a few weeks is far too fast after 3 years on pred.

    There was a discussion about nervous twitches a few months ago - and I think we came to the conclusion that a lot of us had had one or more at some point during PMR. I certainly did during the 5 years I had PMR without being on pred - a twitch just below my eye - but it went away. Most are due to stress or fatigue or a lack of potassium and only rarely is it something more serious.

    You say you've been under stress - and that is tiring in itself, plus you have PMR. The potassium part you can improve by eating bananas and dried apricots, both good sources of potassium, but don't go mad wink  as they are also good sources of calories! 

  • christine_fay
    christine_fay Jersey_Royal

    Posted

    Last r about this time I was down to 1mg tablet a day. My Doctor told me as it was now so low I obviously didn't need it so stopped my prescription. Within two months I was back to square one...worse than ever. Couldn't even get out of bed let alone dress myself. Had an enprmous fight to get re-instated with the original dose (40mg) and started all over again. Was back to normal within 24 hours so went to Doc to prve it... she said anyone who takes steroids feels superhuman ???? Hello where the hell did she get that idea?

    Since then I have improved but the side effects and the other problems are taking their toll I am down to 9 Pred a day now and would give anything to be off them. I am just about to loose another very expensively crownd tooth becuase of the effect of Pred on my gums...I cannot even put my socks on without being drowned in sweat from my scalp and forhead....have to wear a permanent sweat band all day...Having cataract surgery shortly... another gift from Pred, but it would have happened eventually as I have family history of these.I will definitely not be doing any cold turkey this time....whatever the Doc says.I couldn't stand another year of recovering from a flare

     

    • constance.de
      constance.de christine_fay

      Posted

      "anyone who takes steroids feels superhuman"   -  I've come across others who have said this, mostly doctors!   I can only imagine that they are excessively healthy and don't actually NEED steroids!!!!!  Have any of you out there actually felt ANY highs when you have/have had PMR or GCA?  Would be interested to hear from you.

       

    • Jersey_Royal
      Jersey_Royal lodgerUK_NE

      Posted

      Hello,

      No I gave up AA about 4 months ago, I hated taking it, made me feel nauses

      althougj I hear on the news that they have discovered that bisophonates (spelling)? can now help to cure bone cancers.

      JRoyal

    • sue-dorset
      sue-dorset constance.de

      Posted

      Hi Constance, yes I felt high when on steroids, mind you it was at 80mg tapered to 60mg after two weeks! I used to wake up at 2am in the morning feeling as if I could clean the house from top to toe, or run a marathon! I could also talk for England. I was euphoric from the drugs, and probably from the fact I had finally been diagnosed and the sight in my left eye had been saved, even though I'd lost the right. However I soon came back to earth after about six weeks! 

      So Christine's GP is right........ but it sure don't last long! 

    • EileenH
      EileenH Jersey_Royal

      Posted

      It's been used in bone cancers for a long time and also in breast cancer - but the latest is it seems to reduce the rate of breast cancer for women who are taking it. 
    • EileenH
      EileenH constance.de

      Posted

      There are people on the forums who were high as kites on pred at higher doses. Some people also seem to have been induced to do all their spring cleaning when they started on pred - but part of that may have been feeling "normal" after so long feeling rubbish with pMR!

      Certainly hasn't ever had that effect on me...

    • Jersey_Royal
      Jersey_Royal EileenH

      Posted

      Gosh makes me think I should be back on it, and put up with the nauseas feeling, are you on it Eileen?

      J.Royal

    • Nefret
      Nefret constance.de

      Posted

      Yes, had steroid euphoria both when started on Pred at 20mg and every time I had to go up to 30 or 40mg (not always for PMR) I was running up the walls and swinging from the curtains until the dose went down.

      The family found it hilarious, but it isn't for the one with it - I was exhausted most of the time but still couldn't stop.  Couldn't sleep either, but it did settle down eventually.

    • EileenH
      EileenH Jersey_Royal

      Posted

      Am I h*££ ! My bone density is fine and there is no history of breast cancer in my family. I'll take my chances. The study is one of these retrospective ones so there would well be other things that are contributing to it. It will be different if they decide there is a real link. 

      This week in the media it's "do this and you won't x, y z..." - next week it'll be the other way round. In the meantime I'll enjoy life with all things in moderation - PMR has taken enough of my life away without adding to it. 

      There is a far more interesting article in one paper over the weekend though: that it really probably ISN'T worth having chemotherapy if you have a terminal cancer. It there isn't a chance of cure it does seem that palliative chemo (as they call it) isn't worth it. You can have 3 months (or whatever) of good quality life without chemo and a similar amount or only a bit more of poor quality life with it. I'll take feeling reasonably well for most of the time over feeling disgusting for nearly all. But that is me.

    • lodgerUK_NE
      lodgerUK_NE EileenH

      Posted

      One of my closest friends did exactly that Eileen and we had a wonderful six months.  I will never forget it.  I would do exactly the same. We did all the things she had been putting off for later.   Bucket lists were not heard of in those days.

       

    • EileenH
      EileenH lodgerUK_NE

      Posted

      I watched my brother in law take all the chemo on offer and be so ill he could do nothing - the prognosis was 10 months, he died in 9 and never had a good day. He also never told his children - who were in their mid-20s so not small - that time was limited. Had I not told his son they'd have never had the opportunity to say a lot of things that needed saying. And there will still things that should have been said. 

      No - I'm going to live as hard as I can until I die. Today could be the last day of my life and I want it to be good even if there are some things still to do tomorrow and next week and next month...

    • christine_fay
      christine_fay lodgerUK_NE

      Posted

      No, was on it for a month but it made me so sick even looking at the packet made me throw up. It used to make me shake like mad for hours. When I had my previous tooth removed it was very difficult and the dentist said 'Thank god you are not on that alandroic stuff...I have never come across such a dense hard jawbone as yours...'

       

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