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Reducing my pred.

Posted , 13 users are following.

Crystalcave
Crystalcave

Hi there,  haven't been on here to write for a while but I do read others blogs. Wondered if you could help me.  I've been diagnosed with pmr for three years and have gone from 60mg when first diagnosed to14 mg which I'm on now.  Like everyone else suffer from all the pains every time I reduce, even by 1mg per month.  I went to see my Rheumy this week and he wasn't happy with me at all as I was still on 14mg .  He said he wants to see me going down by 1mg every two weeks.  I can hardly walk at the moment, my shoulders, neck and arms are all very painfully, which I told him.  He has referred me to a physio.  I feel that I know my own body better than he does but feel I have no choose as he can stop my medication.  Has anyone got any comments.

thanks,  sue

0 likes, 47 replies

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  • arthur36
    arthur36 Crystalcave

    Posted

    Hello Jenny, My sympathies. I know only too well what these aches ans pains are like.I was diagnosed with PM R about a couple of years ago and put on a very hihh  dose of prednisalone with very miraculous results. Sadly my own doctor wanted me off them and after a long while I am noew taking 5 mg daily. I hobble around like a cripple and always have a good supply of pain killers(co-codomol)  to help cope with the flare ups. My problem now is that I havve lost my balance, and because of night seizures and almost constant trembbling, I have lost much of my memory. All the very best. Arthur24
    • yvonne76152
      yvonne76152 arthur36

      Posted

      have you though to try LDN low dose naltrexone i am on it and only need pred on bad flare ups or chest infections. go to the site they will explain it all and there are more every day using it. i have spoken to one lady on it 15 years many illnessses are helped. worth a lokk xx hope you improve

       

    • patricia31001
      patricia31001 yvonne76152

      Posted

      Thank you so much for sharing this information regarding LDN low dose naltrexone.  I checked out the LDN website++ and am amazed at the possibilities of this drug.  I will continue researching it an plant to bring it up with my Rheumy next month.   From what I read about it today, there doesn't seem to be any side effects.  If anyone knows of the dowside of this drug I'd like to hear from them.  Thanks again, Yvonne, you've inspired me.

       

  • escot
    escot Crystalcave

    Posted

    Yes I have, I am in a similar situation I started on 20mg of Preds July 2013, I had been advised to reduce the Preds, and by Feb this year I was down to 11 since now I am on 8mg and yes reducing the preds is causing me pain  or should I say more in the form of aches,which eases off a bit when I take my preds,but I am aware of them all day in the background, I am worse if I do ironing, or carry things, or sit for long periods of time,hence waking up with the stiffness and pain.  I also find that I do get short tempered at times,which other people cannot and do not like,ie.members of my family, who do not understand as there is nothing on the outside to show of it, and I am sure that  they think is is another excuse for me not to do all the things that I used to do and they think that I should still be able to do them. I also tend to have muscle cramps and often drop things, and I am constantly being told that I am clumsy....so......
    • yvonne76152
      yvonne76152 escot

      Posted

      me too love all you describe and more.because we look ok mostly people dont realise the agony and frustration.many are ok on pred but for me i moved to injections of it .they then became less and less effective. My poly is different tho I have the AS gene which means i have it permanantly looks like. so it also affects me different too.You are not clumsy its part of it i have to buy new crockery on a monthly basis. lol.you just have to be more careful. sometimes eating my hand or hands shake too.Its different every day so take things slower.

      I take LDN now but i can take pred for short amounts of time.it works for me but its not perfect.dont miss the side effects now i have cataracts too..the lens is cloudy slightly not like normal cataracts it goes right through.I cannot take antiinflamitories as they work the opposite on me..do you take them they may help ask your doc..They reduce swelling of the joints and it helps mobility.I did hydrotherapy that really helps but it is painful when you start off. so i took pain relief before i went.heat helped with the muscle cramps for me but some prefer cold.At one time i was so bad i wrapped in an electric blanket it was the only way to get relief. thank goodness that has calmed now. hope this helps  yvonne

       

  • patricia31001
    patricia31001 Crystalcave

    Posted

    I was diagnosed with PMR about two years ago.  The high dose of Pred.for me was 20 mg but for the past six weeks I was down to 5 but the pain just got too bad and now I'm back at 10 mg.  Today I am in pain but was able to walk four miles this morning.  Walking and using weights in pool seem to lesson the pain.  I know its hard but some days I think I can't get out of bad but once I do and get out for a walk I usualy feel much better.  I believe its hard for people who doesn't have PMR to understand the dibilatating pain.  I'm curious as to how the pred. has affected you physically.  Do you get any exercise on a daily basis?  I know its painful but even 20 minute can benifit you greatly.  I'm afraid to stay on the pred but it's better than being in bed all day.  I pray someday I'll wake up pain free.  For now, I take one day at a time.   Everyday is a new day, I get up, get dressed, head out the door for a walk and hope the pain eases enough to get on with my day.  Tomorrow, hopefully, I get to start all over again.  I wish you wellness.  Take care.   
    • arthur36
      arthur36 patricia31001

      Posted

      whoops, have lost the ability towork my computer, due to damaged brain. Will try again later Arthur24
    • Crystalcave
      Crystalcave patricia31001

      Posted

      Hi Patricia,

      thanks for the post.  It's great that you can get some regular exercise,  it must really help.  Unfortunately I have chronic hip dysplacia and am waiting for a hip replacement so can't do much walking, it's very painful and the pmr seems to be attacking my hips most of the time.  Your right people who don't have it just don't understand how debilitating it is.  Carry on with the exercise I'm sure it must be helping.

      take care Sue

  • arthur36
    arthur36 Crystalcave

    Posted

    Hello Crysstalcave, This is Arthur24. I try to follow all on this column as have learned so much. Since having night seizures,PM R and PPrednisalone (no connection), have packed up driving as I realized my brain had lost its edge. If I was thankful for small mercies, it would be that at least I can still shuffle around, thound likely to fall over, so am largely houseboooound. I do have a Zimmer, but use it as little as possible as I do not wish to be come addicted. Happily, I do klnow that we will  wake up one morning totally free from pain. Oh happyy  day. God bless, Arthur
    • Crystalcave
      Crystalcave arthur36

      Posted

      Hi Arthur, thanks for your msg.  I'm sorry that youv'e had to start using a frame.  I have one but not used it as of yet.  I use crutches all the time though as I am waiting for a hip replacement.  The pmr on top of the hip problem is a nightmare. It's also a shame having to give up the driving,  it's my lifeline to the outside world, although on bad days with the pmr I can't drive.  God bless to you Arthur.  Sue
  • mary68968
    mary68968 Crystalcave

    Posted

    This is a little off topic, but I had hip replacement surgery last year & the anterior vs posterior approach is a 1000 times easier.  It's nonivasive & recovery time for me was less than a month.  If there is an option it is worth doing it this way.  I just noticed you mentioned you were going to have hip surgery.
    • Crystalcave
      Crystalcave mary68968

      Posted

      Hi mary68968, 

      thanks for your post.  I'll ask when I see my consultant. I was worried how the surgery will affect my pmr but the Rheumy said it should be ok. 

      Again thank you for letting me know.

      regards Sue

  • arthur36
    arthur36 Crystalcave

    Posted

    Hello Crystalcave, This is Arthur24. Many many thanks to  y ou  and everyone who has written on  this column over the last 12 hours. I woke this am not exactly full of the joys, and barely able to walk until I had taken my Prednisalone plus a couple of co-codomal, whereas only nine months ago I would have been able to jump in my car and nip down to the sea front and enjoy an hour or two of sun shine(I was on the miracle drug Prednisalone). My point is I do not think anyone has mnetioned depression, and to say not only are you all spreading vital information, but lifting spirits more than you know. Take care all. Arthur24
  • yvonne76152
    yvonne76152 Crystalcave

    Posted

    they gave me amitriptylene for depression in the begining.it helps the musclwes relax on a night too.it also helps with pain combined with pred or LDN. hope this helps/

     

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