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rosemary67215
rosemary67215

for the past year i have suffered severe pain and stiffness in my upper legs, thighs and upper arms. i have been referred to a rheumatology and hav at last got an appointment for july. my Dr repeatedly gave me pain killers of all description which rendered me unconcious most of the time. my husband had to do everything for me and i felt so bad i thought about  suicide. i did not feel comfortable telling the Dr this but in hindsight it was when the Dr   actually seem to take me seriouslly . at first she thought it was fibromialga but looking on this site i realise people with this had good periods and bad periods .i only had bad periods and it never gave up. i then said to the Dr who thought it could be pmr and after blood tests she agreed to check out with the hosp cosultant  who agreed to let me have prednisalone. i got the tablets on friday and  overnight a miracle occurred, from my husband getting me in and out of bed, up and down of chairs, washing my hair under the shower, drying and dressing me,  to me  getting up showering and dressed, going out and walking going for lunch and some shopping.  I  felt so elated I cried when I met people I knew, telling them of the miracle . I was started on 15 gr after 3 weeks my Dr reduced it to 12.5g  I noticed the drop I felt more pain and stiffness than when on 15. Last week she dropped me to 11g I am still stiff and sore but manageable. However I do have horrendous sweating and can be very tired. I thought I could put up with this as it is preferable to what I had before but it is horrendous, I am soaking wet, feel like my whole body is on fire and yet my skin is really cold. Is this normal and is there anything that will help and is the Dr reducing at a proper rate as it scares me to go back  to were I was 2 months ago. This is the first time I have gone onto a forum so I beg forgiveness if I make mistakes. I don’t know if I get messages back or not so here goes and thankyou in advance to any one who can give me any advice .ps I am going away for week end first break for a year so I might not be able to respond  till mon xx

3 likes, 28 replies

28 Replies

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  • kay97415
    kay97415 rosemary67215

    Posted

    Welcome, I am fairly new to the forum too but find it so helpful and reassuring.  Such a shame the doctor took a while to try you on the pred.

    There are some lovely helpful and knowledgeable people on here so you are amongst friends.  Hope you have a good weekend and come back refreshed. Kay

    • rosemary67215
      rosemary67215 kay97415

      Posted

      Hi Kay thankyou yes there seems to be a lot of kind people giving off their time to help others i hope when i am futher down the road i can help too.

      xxrosemary

  • erika59785
    erika59785 rosemary67215

    Posted

    I feel for you, and I have been there trying to reduce too fast.  I am presently on 15 mg of Prednisone from 16 before.  Reducing only 1 mg a month.  I tried to reduce from 15 to 14 after a week and it did not work.  2 1/2 would be too large a reduction for me. 

    The fatigue can be tough to take because we are not used to it.  We like to be busy!!!  Rest is best!  smile

  • misdiagnose
    misdiagnose rosemary67215

    Posted

    Dear Rosemary, The hot sweats are underestimated (often called 'night sweats') but they occur all day for most people. Temperature changes, sometimes up to 103 degrees - mine were 20 times a day during the worst of last summer's heat - are exhausting and my doctor was shocked, and said she had never heard anything like it (mainly because I think people are not complaining nearly enough). I think you should take your temperature and count them during the 24 hour period and that way your doctor will get a clearer picture. I am glad you have been properly diagnosed at last but you might get a relapse if you try to reduce the prednisolone too quickly. There is a sharp dip in the early weeks of prednisolone treatment where the body's own cortisol shuts down. I was told this by a doctor who maintains a higher dosage for longer to compensate. Hope you are soon feeling better. 
  • pam7653
    pam7653 rosemary67215

    Posted

    I am not a doctor but I highly suggest you see your rhumatologist again. I also suffered for more than 2 yrs with PMR. In 2012 it started with my thyroid. It was overactive. I also got PMR at the same time but didn't notice it because of thyroid issues. Thyroid issues depressed me and I felt I was losing it. In 2013 I demanded a RA doctor. I was given 15 mg of Prednisone. I stayed at 15 for almost 6-7 weeks. Tapered down to 12.5 after that. I feel you needed to stay on 15mg much longer. Taper slower! Be your own advocate! Somebody has to! I too felt like a million bucks when I got on Pred. It was a miracle. I hadn't done much for months. I got out on day 2 and rode my bike 33 miles! Incredible!

    You sound like yours was really bad if your husband had to help you that much. Wow. The first night on the Pred I must have been to the bathroom 8 times, I couldn't sleep at all. I did get use to it. I'm ok now. I'm on 5mg indefinitely. I've tapered down twice now. By the time I got to 0mg it came back in a week. I'm in my 2nd yr and somewhat happy at 5mg. Just taper longer. Don't rush it.

  • MrSolo_UK_Lancs
    MrSolo_UK_Lancs rosemary67215

    Posted

    After a month to 6 weeks of very painful Hips,Thighs & shoulders visited my GP 4th. June 2015. This was after a fortnight in the Malta sunshine, thought heat would sort out the aches & pains, wrong, wrong wrong. Described my symtoms & after a breif examination I first heard the words Polymyalgia Rheumatica, shock horror. Blood test confirmed the preliminary diagnosis last monday the 15th. Straight on 15mg. of Pred that morning + 2 types of bone protecting drugs. Improvement straight away, I am having bad nights & early mornings with good late mornings/afternoons & evenings, here we are early evening Wed.17th. & since Monday I have noticed a small but significant improvement, roll on tomorrow. I was up until recently an extremely fit 71 year old, can't wait to get back to my golf, wood cutting & all my other physical pastimes.
    • ptolemy
      ptolemy MrSolo_UK_Lancs

      Posted

      Richard I am so sorry you have been diagnosed with PMR but at least you have now got pred to help the pain. One thing don't expect to carry on life as you did before, PMR is life changing and you will find you need to give into it. I was led to believe by my doctor I could just take pred and everything would be back to normal, I then discovered that this was not true.
    • tina-uk_cwall
      tina-uk_cwall MrSolo_UK_Lancs

      Posted

      Hello richard, sorry to hear you have joined the club. Please look up the Bristol PMR plan. It will give you some idea on how this condition should be treated. When you get down to 10mgs I suggest you then follow Eileen's dead slow and almost stop regime. I'm afraid there are no quick fixes with this condition and it is very important to not reduce too quickly or by too great a dose reduction. I would suggest taking a daily supplements of vita, calcium and magnesium, RDA levels. These will all help against bone loss.

      please be careful re the bone protecting drugs, has your Dr tested your current bone density to check if you really need to take them. They can result in long  term problems, so do be careful. All the best, christina 

    • EileenH
      EileenH tina-uk_cwall

      Posted

      Hi Richard - just to reiterate, don't rush back to your physical pastimes: pred is MANAGING your PMR, it hasn't cured it. Until it decides to go into remission you will need some pred - and you have to do a bit of management to match the pred. Your muscles are intolerant of acute exercise and will continue to protest if you overdo things, Think of your muscles as being totally untrained for the moment and now you need to re-train them at a VERY slow pace plus allowing them at least 2 or 3 times as long to recover after using them. You will be able to do more if you rest frequently and know your limits and stick to them. And never think you can "work through this" or that "my muscles are sore, but a bit of exercise will sort that out". You can't, it won't. Don't try to rush it.

      Given your active life I would insist on a dexascan to be sure you really need anything more than the calcium and vit D supplement that we all need. That might be enough for the moment. If your GP is sticky, there are a few places who will do one privately for about £50 - well worth it to know for sure.

      And some reading material:

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

      the first post gives a load of links, the NE of England support group site is particularly good with a couple of resources you can buy for all the information you need in a small pack (DVD and booklet). It's all on the forums but takes a long time to find! There are 2 others in the UK - all 3 are different in format and style but all friendly and useful.

      But having done your reading - come back and ask any other questions you may have.

  • snapperblue
    snapperblue rosemary67215

    Posted

    "The treatment is working so well we are going to discontinue it!"

    Sigh.

    A familiar story on this forum!  As you will have gathered from the other posts to this forum, when your pain and stiffness returned at 12.5 mg, this was a hint that further reduction would not lead anywhere good!  

    As Eileen says, the point of the prednisone is controlling the inflamation and pain.  It does not cure the underlying disorder, so you have to keep taking prednisone until that dies out.  You are not winning anything by taking too little pred to control the inflammation- you just have BOTH the ill-effects of inflammation and the side-effects of prednisone. And the pain. 

    It is worth decreasing the dose to test what the effective lowest dose is.  But you have found that 12.5 or 13.75 or 15 may be needed for you.  A lot of doctors seem to think the goal is "getting off prednisone" (or at least reducing the dose) as fast as possible.  It is not clear whether you have talked to your doctor about the response you experienced- she may be willing to increase to 15 and then reduce much more slowly.

    There is no need to be in extreme pain- or much pain at all (except for those who can't take prednisone)- with PMR.   That part of PMR is treatable!

    Best of luck!

    • rosemary67215
      rosemary67215 snapperblue

      Posted

      thankyou for your input i am trying to take in all the information and hope it gives me a better chance  to understand when i meet the cosultant on Monday xx
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