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

polymyalgia rheumatica forum

Posted , 72 users are following.

janice47477
janice47477

I was recently diagnosis owed with polymyalgia rheumatic and have been prescribed prednizone. I am interested in knowing how others with this disease are doing.

5 likes, 49 replies

49 Replies

Next
  • tony80950
    tony80950 janice47477

    Edited

    I got into this chat room several weeks ago and have found a wealth of information.  Firstly there are a lot of side effects.  Mine include lack of taste, smell, very low energy and stamina and occasionally blurred and double vision.  

    I have found that unless your doctor has a specific test do not reduce the dosage dramatically.  Whereever you are on the dosage, gradually reduce the dosage by 1/2 to 1mg over weeks.  I was at 20 and my doctor reduced me to 5 over a one month period.  The pains came back to an intollerable level and, from what I have found, this negates any progress in healing.  I am going back to 20 and gradually going to reduce it on the Bristol PMR Plan.  

    Most important is you are not alone out there and don't hesitate to ask new questions as symptoms or conditions change.

    Good Luck,

    Tony

  • david14272
    david14272 janice47477

    Posted

    Hello janice.I have just returned from a few days in York & just loged on,Welcom aboard. I would try to put a bit more info on your post ie your dose of pred, what effect it has had,I  have been been on this journey for just over12months just getting over a Verry bad COLD [flue] Dont be afraid to post for any info that you need.they are a super bunch of folk.Stay Positive & all the best for your journey.Dave.
  • LisaCACO
    LisaCACO janice47477

    Posted

    welcome to the forum. the PMR and GCA folks have wealth of knowledge and experience on this forum. I'm a GCA newbie myself, diagnosed just this december, so I can say they've been quite nice. hope you find the community and the information you need here. 
  • cindy63197
    cindy63197 janice47477

    Posted

    How are you feeling now?  At first I still didn't feel that great, though my doctors thought I should. I kept having to go back to bed, thoug at night I couldn't sleep because of the pain and stiffness.   However, gradually I started to feel better, and have been able to reduce my dosage gradually, from 15 at one time (last winter) to 2mg now.  Each time I lower the dosage by 1mg, I have about a week of increased pain, but once I get through it, I feel better from the decreased dosage.  Now I feel pretty normal, though, sometimes I have some shoulder pain, and if I really push it, I become fatigued.
  • christine_fay
    christine_fay janice47477

    Edited

    I managed to reduce down to 1 last August but after a week the symptoms returned I was really  shocked at the reaction of people when I went shopping.. Using the trolly to get around I could hardly stand up. People kept asking if I were OK. I was determined to stay off the Pred because the side effects were so bad. By November I could not move. Spent all day in bed or in a chair. Doctor did not want to give me Prednisolone again but in the end I had to threaten action. After starting again ( doc said I could have 6 a day which were nowhere near enough) I needed to travel to Ireland. I took 40 Pred. Then next day 30. Reducing daily by ten. After that went down by one a day. I managed to fly to Ireland as a normal upright walking person. I worked for two days and flew back. Then reduced the Pred right down and stopped. I had run out and they refused any more. Back to staying in bed again. Another trip to Sweden this time I was in a wheelchair but visiting relatives. By Christmas I had a supply of my six a day once more. Tried ten a day to start but did not work. Took 30 and reduced daily by five until I got to 15 then dropped weekly by one. I am now on 12 and half and reasonably comfortable but was better on 15. I am going back to Docs to try and sort this. They should not withhold vital medication..... I know I freelance a bit and that annoys them but hey my method works. Not only that the side effects have subsided. The buffalo hump has gone and the sweating is only now when I vacuume the house or make the beds. The awful palpitations and heart anything was not from Prednisolone but was a side effect of Omneprazole. I do have excruciating headaches and tinnitus though but doc takes no notice of that.
    • EileenH
      EileenH christine_fay

      Posted

      I think you need a new doctor Christine - with PMR symptoms and headaches and tinnitus GCA must be ruled out since they are both possible symptoms.

      The yoyoing your dose has probably contributed to your problems as well. If the GP won't do things properly tell him you want a referral to a rheumy. If he won't refer - find another GP asap.

    • christine_fay
      christine_fay EileenH

      Posted

      Cant change doctors here... they are the nearest and other docs will not take new patients out of their area. I was diagnosed with GCA which is why I was put on a high dose originally. I have had short term high dose steroid treatment in the past for pneumonia type problems and had no problems, I have to be able to work from time to time so have no choice but to up the doses in order to deal with the stress. Like people do if they have an illness or opperation. I am 71 and the treatment given out by the doctors in this area is appaling for older people... they really treat you like imbeciles who should go away and die. If I make too much fuss they may well remove me from the list and then I will not be able to find another doctor. 
    • EileenH
      EileenH christine_fay

      Posted

      Hmmm - if you had GCA originally and have been forced to reduce too quickly then the GCA remains an unsolved problem. And you should be under a rheumy, not a GP who seems to have forgotten his oath. Where are you?
    • christine_fay
      christine_fay EileenH

      Posted

      I amin a very rural part of Oxfordshire and yes I think you are right...when I did some research on this I know that the reduction originally was way too quick and too much at once. They would not listen to me and the doc said my blood did not show the 'correct' inflamation info to see any specialist. I had a reumatologist examination at the Nuffield a year or so before and they could not find a specific cause... again bloods were not postive. It was obvious I had sever inflamation but as I had also had Graves Disease thre years prior which did not show at allin the blood...I had a thyroid storm and was diagnosed by radio therapy. Thyrotoxicosis... I try to explain this to the docs but they think autoimmune conditions are 'fake' It is really frustrating and scary. Last October I had pain in one of my toes. Doc said it was my heart and gave me some medication... It was so WRONG for me and I ended up with terribly swollen legs, She admitted giving me the wrong stuff and thought it funny. Although the swelling subsided when I stopped this I still had 2 months in agony because of this. I hate GP's ! Since stopping Omneprazol I have had no 'heart' symptoms whatsoever and my blood pressure has gone from high to normal all the time! I am sure if I told them that they would not give me an appointment... they should never have left me on Omneprazol for ten years without any tests or checks....or any suppliment advice.

       

    • EileenH
      EileenH christine_fay

      Posted

      They can't just chuck you out, though I admit they can make life unpleasant and a doctor did once tell ME to get out of his practice. I went with the greatest of pleasure and it was a "Good move". 

      I would report any GP I met finding adverse reactions to a drug funny - amlodipine was it? Pain in a toe = Heart???? And no, omeprazole is recommended for use for a few weeks at a time, not long term. The FDA is quite clear about that. Gastroenterologists are less keen on it but GPs dish PPIs out like sweeties. 

      Your GP (or whoever went on about "correct") needs some education: approximately 1 in 5 patients with both PMR and GCA never mount an acute phase reactant and the biopsy is clear in about half of patients.

      You are a typical autoimmune patient - get one, get more. Bit unfair but there it is. Is a private rheumy consultation an option?

    • christine_fay
      christine_fay EileenH

      Posted

      no private consultation possible now. Ten years back my husband and I were still woring and had private medical insurance so original AutoImmune diags were with them. These NHS docs resent that.... We lost our jobs because my husband was diagnosed with PP Multiple Sclerosis and has been progressing downhill ever since. I amhis primary carer and he is very poorly now, mostly wheelchair bound. We get no help at all apart from his attendance allowance which only stretches to some physio for him and a private consutant twice a year who liases with our NHS docs for his medications. It can be very hard sometimes...if I cannot get out of bed my husband has to really struggle. He tries to help but really makes more work than anything else. If he falls it sometimes takes me 3 hours to get him up on a chair again... mainly because he gets the giggles and then so do I... we both cant breath for laughing sometimes but I think that is really underlying fear and frustration. It's our system's way of dealing with this horror.

      Thank you for the information above... I will go armed with it because I get this nonsense every time I ask for referal or help. I amwondering if after stopping the Omniprazol the blood test may now revealmore ? I have been on them for 10 years and I have had such a positive recovery in some areas I just wondered?

    • EileenH
      EileenH christine_fay

      Posted

      "These NHS docs" should not be resenting anything - because a lot of them are earning from doing private work. 

      And I know a few paramedics who would happily come to help you get your husband back up. They feel that is more their raison d'etre than drunks throwing up having spent their pay on a Friday night.

      I don't know the omeprazole will make much difference to the bloods. But if you do NEED any "stomach protection" a packet of Zantac has far fewer side effects and does pretty much the same job for this scenario.

      I've had some news this evening which relates to the NHS which makes me very sad - and even more despairing for the people who depend on it.

    • christine_fay
      christine_fay EileenH

      Posted

      We are extremely and remotely rural...very hard to find in the dark and 3 miles from nearest anything.  I used to walk there and back a couple of years ago! Now getting to the washing line is a struggle...
    • EileenH
      EileenH christine_fay

      Posted

      When we chose our retirement place it had a set of criteria as I was born and brought up in a place like yours. There had to be a shop, pharmacy, doctor and restaurant within easy walking distance. The doctor was there and then she moved - now we have to get 3 miles to the practice but, mercifully, the new one does house visits! The hospital is a 45 min walk - and when I was ill 3 years ago we were very grateful. But we still have meadows under our balcony. 
    • muirkelsi
      muirkelsi EileenH

      Posted

      Good afternoon EileenH,

      I wonder if you have come across the problem of sweating mostly on the face? I am now on 7.5mg of prednisilone for my PMR, and have no aches of pains which is great.My problem is that the perspiration runs down my face if I walk more than a few yards. Apart from that, I am managing very well.

      Kind regards,

      Grace

    • EileenH
      EileenH muirkelsi

      Posted

      I know a few people who have complained that when they have sweats is is in the head and neck area - resulting in soaked hair and damp collars. So obviously some people can have very localised sweating - whether it is the PMR/GCA or the pred isn't entirely clear though since both can cause sweats.
Back to top
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.