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Flare not settling. Fluid retention

Posted , 8 users are following.

Kassiebeetle
Kassiebeetle

Pain in thighs and shoulders not settling with increased pred. Gone from 12 mgms up to 15mgms Specialist orders. I get increased shortness of breath, wheezing and endless sleepless nights from pred side effects.Max 3 hours sleep. At present I feel terrible both from PMR and the pred side effects. Question has anyone been put onto a diuretic? Has this helped? I don't have any significant ankle swelling but where I do notice it is around my eyelids. Any help would be appreciated. I have been taken off the MTX . cheers. Kath

0 likes, 23 replies

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  • karenjaninaz
    karenjaninaz Kassiebeetle

    Posted

    I was in a diuretic for a short period of time when my BP went up from pred. It made me very dizzy. There are some diuretics contraindicated with pred. My BO when down when I cane down in pred and took Vit D andhadnid range normal blood levels.
    • karenjaninaz
      karenjaninaz

      Posted

      I meant BP not BO. I found pred at 15 mgm  made me so winded and it’s gradually improving at 8.5 mgm. I was on steroid inhalers too - symbicort higher dose. I gradually tapered to the lowest dose formulation with no worsening of breathing. Of course heart disease was ruled out.
    • Kassiebeetle
      Kassiebeetle karenjaninaz

      Posted

      Thanks Karen, yes I take steroid inhalers as well. Did you notice any difference in your breathing with the diuretics? I know that what I feel is related to the pred and not to my usual breathing issues. I know I should look at increasing the pred but the side effects are causing more issues than the PMR. Dammed if you do and dammed if you don't. Thanks K

    • karenjaninaz
      karenjaninaz Kassiebeetle

      Posted

      I did not notice an improvement in breathing with a diuretic. Interestingly, sometimes when I felt winded, I would try very slowly to increase activity and I would feel better. The less movement I would do the worse I would feel. It's a balancing act.

  • christophe38948
    christophe38948 Kassiebeetle

    Posted

    Hi,

    The side effects of Pred are significantly affects life. Shortness of breath, wheezing, sleeping problems at night and sleeping hours at day.

    Good Luck

    CW

    • Kassiebeetle
      Kassiebeetle christophe38948

      Posted

      Thanks for your reply. What dose pred are you on? Have you had side effects yourself? Thanks K.

  • nick67069
    nick67069 Kassiebeetle

    Posted

    I had shortness of breath at 15mg, It gradually improved with reduction and it went away completely after I was below 10mg. Had no experience with diuretic while on pred, so cant comment. I do remember on higher doses of pred I had constant hunger  and was thirsty all the time.  The main thing is to take it easy, watch salt intake and not worry too much.  I would not take any other medication, if it was my choice.  As you reduce pred, things will become closer to normal, so hang in there.
    • Kassiebeetle
      Kassiebeetle nick67069

      Posted

      Thanks Nick. I would be happy to start on a diuretic if it will help as I see it as short term. I think I need to increase the pred to get The flare under control. I am surprised that I am not responding to the increased pred at 15mgms. I shall wait for more input as due to the time differences lots of folk will still be asleep or just waking up then make some decisions. Oh to have a little more sleep!!!. Take care Nick. I am in Australia. Where are you?
  • nick67069
    nick67069 Kassiebeetle

    Posted

    I am in Japan, practically in the same time zone smile
    • Kassiebeetle
      Kassiebeetle nick67069

      Posted

      Japan. That's good to hear from others far and wide. How do you find the treatment for PMR in Japan? The UK has the best resources that I have found. The online resources in Australia are very basic.

    • Anhaga
      Anhaga Kassiebeetle

      Posted

      I get the impression that the UK is the "go to" place for resources about PMR which I guess is why their PMR/GCA forums have become so international!  I just did a quick google search and it looks like incidence of PMR is rather similar in Japan to what is found in Western countries.  

    • EileenH
      EileenH Anhaga

      Posted

      You wouldn't have thought that 12 years ago! this was the only forum - and 5 women "met" here and decided it was time to get a support charity going because netiher the forerunner of VasculitisUK nor ArthritisUK were interested in us - pre-VUK because "it isn't vasculitis" (it wasn't thought to be until about then) and AUK because GCA wasn't arthritis... So the got together, the NE of England charity was formed, to go with the Scottish one that was already there. The rest is history - but the reason you can find so much from the UK is because of us - and our close contacts with UK doctors.

    • Kassiebeetle
      Kassiebeetle EileenH

      Posted

      It is interesting to get a bit of history. I am very grateful for those on this forum who share their experiences and medical knowledge. I worked in A&E for a longtime and had never heard of PMR. Fibromyalgia is more well known to us in Australia.. To update you all. I took 25 mgms pred last night felt much better today. Will take the higher dose for another couple of days then see how I go on a lower dose. Will play it by ear till I find that dose that makes me comfortable then will try the slow reduction protocol. Thanks again to the PMR Pioneers.

  • nick67069
    nick67069 Kassiebeetle

    Posted

    sry lunch time here... I would not know if there was any online help here... cant speak or read language.  For me the biggest challenge is language. Often wife has to "take me" to a doctor and translate for me. After I get to know doctor, I know how much they understand English. Some are pretty good. For some I can use google translate to communicate.  As far as medical care, it is inexpensive and very good. Unlike US ( where I used to live), it is so cheap that I don't even look at my bill when paying.  Just as an example, every 3 months I have checkup. I go to a hospital at 8:30am , get blood and urine analysis done; have rheumatologist appointment at 9:30, He has all the blood test results on his PC by the appointment. I usually see urologists at10-10:30  and by 11 or so I am done. The whole thing cost about $20-$25 ( my co-pay, which is 30% of the total). The system is very efficient and excellent quality.

    • Kassiebeetle
      Kassiebeetle nick67069

      Posted

      That does sound good. Very inexpensive. You must find it so much more cheaper than USA. Take care.
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