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decreasing going well, at 4.5, but

Posted , 8 users are following.

gina30088
gina30088

Hi

Decreased to 4.5, was doing well then night sweats( soaks ) started up again, any thoughts?

Thanks in advance Gina

0 likes, 8 replies

8 Replies

  • EileenH
    EileenH gina30088

    Posted

    My experience has been that at this sort of level there are two reasons for this - one is that you may be at slightly too low a dose to manage the inflammation of the PMR and the inflammatory substances being shed in the body at 4.30am is enought to cause sweats then. The other reason is that your adrenal glands are not quite keeping up with the reduction in pred - sweats can be a symptom of poor adrenal function too. 

    If you stay at 5mg for a month or two before recommencing the reduction may help. One top PMR rheumy likes to keep his patients at 5mg for anything up to 9 months for that reason! 

    How is your fatigue level? 

    • gina30088
      gina30088 EileenH

      Posted

      Thanks Eileen

      Fatigue is creeping in, but it seems different then pmr, 

      Hits sporadically, but get refreshed with a short rest , for me.in the thick of pmr it never really went away. 

      Noticing muscles bit weak though.esp legs when walking. NO PAIN 👍

      My rheumi said if wanted to stay at 5 until my daughters wedding,

      in Oct she was fine with that if decreases from there to difficult.

      Just didnt think that . 5 down wouod make a difference., should have know thats not the case ,though from this forum 

      So i will prob follow your thought, stay at five. at least till then 

      Interesting  though, By cutting carbs drastically, sugar and salt, I managed to lose 20 lbs while on pred, and never got other side effects, other than emotional rollercoaster, and ruddy complexion.

      But now that on lower dose some lbs are trying to creep in and i notice an appetite increase. I am going to up walking, and be dilligent but this seems odd to me. Anyone else experience this?

      Thanks Eileen

      Be well

      Gina

       

    • EileenH
      EileenH gina30088

      Posted

      Strange - I seem to remember someone else saying their appetite improved at low doses. Maybe the PMR has got up and gone???? But I wouldn't tempt fate - 5mg until the wedding! Then try again smile

    • Rimmy
      Rimmy gina30088

      Posted

      Like you Gina I have lost weight on the higher doses of Pred which also seemed to suppress my appetite rather than increase it. Now tapering down to lower doses I feel my appetite increasing and recently have had the first sign for ages of gaining weight - although I have also perhaps been less assiduous about the low carbs lately. I have however noticed the more exercise I do the hungrier I feel - and that has always been the case. 
  • Oregonjohn-UK
    Oregonjohn-UK gina30088

    Posted

    Quick comment Gina - remember the 10% rule, if your at 20mg it would be 2 mg but at 10 is only 1 mg and so on, so if you are near what your body is 'making' and you reduced above the 10% it will complain!!

  • Miu
    Miu gina30088

    Posted

    Hi Gina, what you report is so familiar to me. In July I was very pleased to be on 3mg after years of PMR (diagnosed in January 2011). Then I started to get tired and my thigh muscles started to ache again, they feel very weak. I went back up to 5mg for a couple of weeks and felt a lot better. Now on 4mg. My blood tests are OK.

    I sometimes feel very down as I seem to have had this PMR for so long...I am as active as possible and otherwise OK. Good luck with it all.

    • gina30088
      gina30088 Miu

      Posted

      Hi

      If you feel good at 4-5 accirding to this site and my rheumi beat to stay there,

      as it really doesnt cause side effects

      I know ,i would love to put that pill bottle away for good , and do think I will get there just not today....

      Try not to be discouraged,i think  we are fortunate to be controlled on such a small dose

      take care, g

       

    • EileenH
      EileenH Miu

      Posted

      I have had PMR for 13 years - the first 5 undiagnosed and untreated. That is pretty unusual but about 5% have what is termed refractory PMR. 75% of patients are off pred by 6 years, many sooner - there is an end in sight!
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