1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Pain and more pain.

Posted , 9 users are following.

tony09890
tony09890

I've been reducing my prednisone dose by 1.25mg per week for three weeks, because GP now believes I don't have PMR. Each drop resulted in a worsening of whatever it is I've got (pain in wrists, forearms, elbows, shoulder, neck and ribs at the back)., I came down with a rash on torso around this time but GP advised it wasn't connected to prednisone and told me to decrease dose in 2.5 mg steps which I did. Next day I was woken at 1:00 am by excrutiating pain in both forearms, applied hot compresses and pain gradually abated. Saw Gp the next day, his advice was 'hang in there'.next day around the same time again woken by excruciating pain in forearm, four hours later got wife to take me to emergency. Doctors treatment: none, other than 25mg prednisone for five days then reduce to 10 mgs. I'm a bit worried when I drop from 25mgs to 10mgs I''m going to be in a world of pain. Comments?

0 likes, 33 replies

33 Replies

Prev Next
  • Kassie_beetle
    Kassie_beetle tony09890

    Posted

    Tony what a disappointment having to cancel the cruise. How long have you been on the 15 mgms pred? Some PMR sufferers have to start on a higher dose initially. you said in your initial post that with each reduction your pain was getting worse you also said that the GP stated that you wouldn't have any problems with pain when reducing the pred as you don't have PMR. GP hasn't got it right yet has he. My suggestion is you see how you go on the 25 mgms over the next 5 days if your pain improves you have PMR if not then you need pain relief of a different type. Ibobrufen can give you a rash and itchy skin. It is not advisable to take pred and Ibuprofen as they can both affect your tummy and cause bleeding. Might be worth stopping the ibuprofen. With regards to the dropping the Pred  from 25 mgms back down to 10 mgms I would see if Eileen has some thought on that. 

    Cheers

    Kathy

  • tony09890
    tony09890

    Posted

    No, I'm saying I took my first 25mg dose this morning, that's about 12 hours ago and at the moment I'm doing ok. I'll bo on the 25mg dose for five days and then drop to 10mgs, that was my question: what are the likely effects of dropping from 25 to 10 after five days on 25.

    I'm aware ibuprofen and prednisone together are not recommended; however, my GP suggested it ' as needed', and as I said I can only take 3-4 doses before feeling ill. Believe me if your in enough pain you will try anything. Have an appointment with a dermatologist next Friday.

    I was on 15mgs prednisone for around two months before starting down, made it to 10 and that's when the excritiating pain began? Up until then I was ok as long as I didn't use my hands.

    I'd like to try using my hands in a day or so but I have also identified RSI as an alternative based on my symptoms and areas affected. With RSI they recommend complete rest.

    • maid_mariane
      maid_mariane tony09890

      Posted

      Try splitting the dose it helps me. I wake by 5am 10mg, lunch 5mg supper 5mg

      Really reduces the pain over the day and much better in morning almost normal where before it took me up to 3 hrs to move

      Mariane Toronto

    • ptolemy
      ptolemy tony09890

      Posted

      Tony, if you are OK over the next five days on 25mg and from what you say, the symptoms do seems like PMR. In my opinion it does seem that your GP is a bit of a numptie and has not got much of a clue about PMR or steroids. Dropping from 25mg to 10mg after such a period of time I would have thought is a recipe for disaster. I would just reduce slowly and surely, when you feel you are stable at one dose then reduce. If you go slowly you can usually stop easily if any pain starts. Obviously 10mg did not have the inflammation under control.

      You could try paracetamol instead of Ibuprofen, but ideally the steroids should be enough. 

  • tony09890
    tony09890

    Posted

    Waking up this morning I am wondering what is going on,.my right forearm is swollen slightly, I have applied an ice pack to try and dull the ache.   Sore to the touch the right is far worse than the left. I’ll split the dose tomorrow, but not looking forward to decreasing.   I think there is far more going on here, particularly in my forearm, than PMR.   As the right is far worse than the left I’m thinking the elbow arthroscopy I had some months ago has something to do with what is going on now.   Now using straws to drink my coffee because I can’t hold a cup, my left hand to spoon cereal from a bowl sitting on the table, an electric toothbrush because I can’t use a manual toothbrush, my left hand to type this because my right forearm is too painful, mightily sick of this, even insulin injections are proving difficult.   Starting to think it is an allergy I have  developed– an allergy to life. 
  • Kassie_beetle
    Kassie_beetle tony09890

    Posted

    Hello again Tony

    if I were you I would go back to the emergency department for review. It almost seems like you may need to be admitted for further investigations.

    How is the rest of your body? Has the Pred helped?

    Kathy. 

  • tony09890
    tony09890

    Posted

    Pointless going back to emergency, didn't recieve any treatment the first time, no reason to expect any joy the second. Have no choice now but to wait until I see the rheumatologist at xmas. I'll talk about doseage reduction with my GP on Tuesday, not expecting much joy there either. So just have to put up with more and more quacks and more and more bad guesses on their part. Who knows, the more quacks I see, the more chance I have of finding one who doesn't quack quite so much.
    • ptolemy
      ptolemy tony09890

      Posted

      I am not sure I would start reducing the pred when you have such problems.  PMR loves stress. I was unable to lift a spoon etc before I was diagnosed with PMR, but good old pred sorted that out. Are you saying this is not true for you at 20mg?
  • maid_mariane
    maid_mariane tony09890

    Posted

    Hi Tony,

    how was spreading the dose. I found the first day a difference in the afternoon and night. Before the pains would start to return later afternoon. It's been a week doing this for me and much better.

    I hope it helps you.

    I'm armouring myself with the 2 methods of reduction to present to my Rumi this week just in case she has other ideas. I'm not ready to reduce and it's been 3 weeks today. I need another 3 to get into a rhythm and learn my limitations.

    Keep in touch, were do you live.

    mariane Toronto, CND.

  • tony09890
    tony09890

    Posted

    I took 12.5 mgs this morning , the other 12.5 mgs I'll take tonight.   Wrists and forearms are sore this morning but at least I could hold my cereal bowl and didn't need a straw to drink my coffee   I live in Adelaide - long, long way from Canada.    Even on 25 mgs I am not free of pain and am still unable to use my hands/arms for longer than half to one  hour per day without suffering extreme pain that night and next morning.   The boredom is killing me, I'm retired and am used to spending days in my workshop making things, riding my bike, paddling and sailing my canoe or playing my guitar, now I can do nothing but tap the keyboard, read a book or watch TV.   Just so angry!
    • maid_mariane
      maid_mariane tony09890

      Posted

      Hi there

      Glad to hear your a little better but i personally would take your evening dose and spread it between lunch and supper. It may help you out more during the day and not as disrupting to sleep.

      This forum is great and I'm sure Eileen will comment she is great.

      This disease truly seems to hit us active people so the lack of doing for us is doubly emotional than most. It's a hard pill to swallow but as someone on this forum said it is teaching us all "patience ". For me that is extremely difficult but i have to learn in order to heal.

      Keep me posted, private message

      Mariane

    • lucy82013
      lucy82013 tony09890

      Posted

      Tony

      I think you may have a point has your dr done any scans at all.

  • tony09890
    tony09890

    Posted

    This is one of the reasons I am angry, I taught myself to play like this in my retirement.   I play by ear, can't read music and now I can't play, just so angry!

    Emis Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • lodgerUK_NE
      lodgerUK_NE tony09890

      Posted

      Tony

      You wrote 'just so angry'.  Being angry won't help you to deal with PMR.  Neither stress nor anger are a help in dealing with an auto-immune illness, in fact, just the opposite.

      We all know how difficult it is to accept that you can no longer live the life you were living before, but it will get better, albeit slowly and you will be able to do some of the things you did before.

      The sooner you can come to terms with this vast change of lifestyle, it is not easy and is there no-one you can talk to about it all.   Just spilling it all out to a family member, close friend or a counsellor should help.  Don't bottle it up  - let it all out.  No man is an Island you need to talk.

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.