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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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  • helenemiles
    helenemiles rosemary67215

    Posted

    Hello 

    I am also very news to this forum , welcome . You will find the support and advice so welcoming . I too have shared your symptoms and thought that there was no light left at the end of the tunnel . The advice and support I have received from others has kept me going since my body was taken over by 'aliens'.

    I had a wonderful result like you when I started on Pred in April and have experienced horrendous sweats like you have described throughout my journey . 

    I took it upon my self to try and reduce from 20mgs too soon ... Which put be back on 4 occasions . I would advise that you refrain from any reduction until you have been symptom free for at least 6 weeks .

    my experience has shown that I ran before I could walk ... 

    I am hoping that you continue to feel better in yourself , and use the forum for support as its lovely to know that you are not alone .

    take care 

    Helene 

    • rosemary67215
      rosemary67215 helenemiles

      Posted

      Thank you Helene for you support .I have had to go away for family things and this is my first chance to look at the forum and also find out how to work it. Glancing down the posts the same things seem to crop up reducing too quick and need to take things easy. i am seeing the consultant next week and hope this forum will give me the ability to ask the right questions when i am there. hope you are well

      Rosemary

  • david14272
    david14272 rosemary67215

    Posted

    Hello roemary. just short post i would say you are reducing way to fast, and yes the sweating can be down medication & allso the fatigue can be part of the journey.I am thinking you will get plenty of good advice so stay tuned.take care and Slowley does.Dave.
    • rosemary67215
      rosemary67215 david14272

      Posted

      Hi David thankyou for your contribution . my husband is really supportive of me but it is great to hear others who have experienced the symptons and know that i am not going mad.

      many thanks Rosemary

  • ptolemy
    ptolemy rosemary67215

    Posted

    Taking pred initially really is like a miracle. I had the awful sweating like being in a warm shower, it was horrendous. It has got much better recently I don't know if it is because I have changed my pred tablets or not. As Helenemiles says take care in reducing too fast. It can come back and bite you. Don't reduce until you are comfortable with the curent dose. Otherwise you may land up with a flare and then have to increase again, which means you have gone through unecessary pain. 
    • rosemary67215
      rosemary67215 ptolemy

      Posted

      Hi ptolemy I   am going through a number of posts and am seeing the same things croping up . being new i really dont know how this all works and who can see what and i don't want to be repetitive . i will ask the cosultant next week if the pred tablets can be changed and will that help the 'personal tropical monsoons'  many thanks Rosemary
    • ptolemy
      ptolemy rosemary67215

      Posted

      Hi Rosemary, it does seem that pred is the only thing that really works on reducing the PMR inflamation, although some people are unable to take them which can cause them problems. What were you hoping to have the tablets changed to? It is the corticosteroids that have the side effect of the heavy rain effect, I am not sure there is much that can be done. If your consultant has an idea what can improve things I would love to know.
  • tina-uk_cwall
    tina-uk_cwall rosemary67215

    Posted

    Hello rosemary, I think most of us have been in your situation. Pre diagnosis I cried and cried because I was in so much pain, then into my 4th hour of my very first dose I cried and cried as I was so relieved that the pain had gone and I knew there was hope for a future.

    but let's talk about your current treatment. Firstly by reducing you so quickly through the doses your GP has proved one thing and that is the condition you have responds to preds, therefore now that fact has been established they need to instate the correct treatment care pathway, and zooming through the doses at high speed is not the way to go. Please look up the Bristol PMR plan. Any Dr worth their salt will use this plan to treat you until you get to the 10mgs stage. That's 15mgs for 6 weeks, 12.5mgs for 6 weeks, followed by 10mgs for anything up to a year. I was on 10mgs for 6 months. Some patients even find this reduction regime too severe and can only successfully reduce by 1mg every 6 weeks.

    once at 10mgs we then like to emply Eileen's dead slow and almost stop reduction regime which envolves introducing the new reduction dose very very slowly.

    if your Dr persists with this rapid reduction you will end up with constant flares and yo yoing up and down the doses with each flare harder and longer to get and keep under control.

    many of us have learned that dr's are great but when it comes to PMR and preds most have little or no idea and we have to learn to listen and in turn treat our body's in a way that's best for us.

    welcome to the site, it's very important that you ask all the questions you have plus research this condition so that you are well informed. This condition will not kill us but it will be around for as long as a bad smell, so prepare yourself for the long haul. All the best, christina 

    • rosemary67215
      rosemary67215 tina-uk_cwall

      Posted

      Hi Christina it is great to read these posts as it gives me the information i need when i go to the hospital next week . i had a chest infection last week and the doctor told me to go back up to 15 mgs for a couple of days and then reduce back down by one a day to 11 again. i am not sure if going up and down like this is good. is it normal to have very swollen legs feet and ankles with PMR. thankyou for the support
    • tina-uk_cwall
      tina-uk_cwall rosemary67215

      Posted

      Hello Rosemary, yes I'm afraid swelling of legs, ankles and feet is a normal ide effect of prednisolone. I gave shoes I can no longer wear comfortably because my feet are swollen. I understand that as we reduce down the doses the swellings get less too. Regards, christina 
    • tina-uk_cwall
      tina-uk_cwall misdiagnose

      Posted

      Oh is that's what it's called. I haven't worn my engagement or wedding rings since diagnosis, it's a nuisance but as I said when I get on the really low doses hopefully it will go. I wish you all the best. Regards, christina 
  • EileenH
    EileenH rosemary67215

    Posted

    "Normal" - not unusual with PMR and pred.

    I'd say your reduction is too fast - ask your GP to look at the paper you'll find as the "Bristol paper" in the post this link will take you to

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

    This is a top PMR expert (Kirwan) and his colleagues writing for GPs to help them manage PMR and GCA better. They keep you at 15mg for 6 weeks or until the symptoms are well managed if it takes longer. Then 12.5mg for 6 weeks. This clears all the inflammation out and then you reduce to find the lowest dose that gives you the same result as you got with the 15mg. It's written for your GP so she shouldn't be iffy about it.

    Have a look at the other links - especially the first one to PMR-GCA NE where you will find a lot of info and they have an info pack for new members - you don't have to be i the NE to join!

    Are you sure you aren't doing too much because you feel so much better? You must rest to give your body a chance. The underlying illness that causes the symptoms is still there, the pred can only manage the symptoms and the autoimmune part is what causes the sweats and fatigue. 

    Wear layers, keep your rooms cool, have a fan handy. You have to learn to pace yourself and know your limits - and if you do less the sweats are also often less. For you now with PMR even an ordinary amount of effort is like being a lumberjack - you'll break into a sweat and drip merrily. REST, REST, REST - and learn to say NO.

    No apologies needed - everyone got here for the first time at one point. Have a lovely weekend away - and REST!!!!!!!!! 

    • rosemary67215
      rosemary67215 EileenH

      Posted

      Hi Eileen

      i will follow your advice and look up the links you have said. i do feel that i am doing too much . normally i worked hard and thought nothing of it ,yesterday i changed the bed and a couple of washes and hung them out to dry it took me most of the day and i had to keep sitting down as i was having many personal tropical monsoons. but its because i have movment and so little pain i feel that i should be able to do it. I bought a small hand held fan but can't keep up with the batteries and now have a big one on a stand thanks to tescos and my husband is wraped in a blanket. bless him. thank you for your comments and advice rosemary

  • christine_fay
    christine_fay rosemary67215

    Posted

    Be kind to yourself... I agree that you have reduced to fast... we have all been there !!

    If you can, make a day in the week that you pamper yourself with a whole day in bed resting...watch V or movies or listen to music... don't read because even that can make you sweat... just do nothing.. have some sandwiches or some consomme in a flask or some crackers and some fruit and cheese... just simple nibbles. I have recovered from overdoing things this way quite often and have enjoyed the following day immensly. I even had two days in bed after a job in Ireland last year... the flying knocked me out!

    Anyway you can at least be pretty sure you have PMR by what you describe.

    I do wish I could get some decent sized sweat bands that dont pop off my head because the sweat running into my eyes really hurts.Its only my head that sweats but it like a shower as you say...so much its ridiculous.

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