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Almost three weeks into reducing and ....

Posted , 12 users are following.

rocketman42
rocketman42

Hi-

I started to reduce from 11mg to 10.5mg almost three weeks ago. Had been feeling fine until today and suddenly feel like crap. Inside of my thighs are aching, back is tight, feel depressed and a little nauseous.

Nothing unusual happened in the interim and I am not sick with a cold or flu. Thought I made a successful leap and would settle in at 10.5 for a bit and now this.

What's up ?

1 like, 11 replies

11 Replies

  • gail39791
    gail39791 rocketman42

    Posted

    Hi Scotth42,

    Sorry to hear you had a set back. I have found that sometimes if I have overdone it one day, I really pay for it the next. What often happens is that I feel so good, and am so anxious to return to physical activity, that I overdo it. Is it possible you did not rest enough? For me, episodes like that are not so subtle reminders that I have an underlying disease which demands that I get my rest and pace myself. I usually get back to my baseline within 1-2 days after spending a day resting and even taking a nap. Hopefully, your set back will be temporary. If it last longer, you may have to consider going back up on your dose. Fingers crossed that it won't be necessary to do that.  

    Best of luck,

    Gail

    • rocketman42
      rocketman42 gail39791

      Posted

      I did not overdue anything.  That is what is so disturbing.  Going along well for almost 3 weeks and out of nowhere for no apparent reason. 
    • Mrs_CJ
      Mrs_CJ rocketman42

      Posted

      Hi Scott

      what u are describing sounds like what is happening with me since I have gotten to the lower doses. I use the DSNS from beginning to end and I can only reduce by 1/4 mg.  I’m currently on 2 3/4 mg for PMR. 

      I keep a record of daily dose and symptoms.  I do the first half of the reductions quite easily but once I get to alternate days or just past alternate days the trouble begins. Sometimes I repeat steps, sometimes I increase my dose by a little or up to 1 mg for a few days, and sometimes I quit trying to reduce and stay where I was for a period of time. 

      From my my reading on this forum it sounds like a lot of people have issues in the first half of the DSNS but for at least the last year and maybe more (would have to look at my diary) I have issues during the last half of the DSNS!

  • margot34956
    margot34956 rocketman42

    Posted

    Oh that's so very disappointing for you! I really feel for you.

    I am going to go from 10 down to 9.5 in two days. I thought it was O.K to reduce at such a small reduction.

    I hope you will be feeling better soon and can get back to reducing.

    All the best!

  • EileenH
    EileenH rocketman42

    Posted

    Half a mg can make a big difference if the dose you had been at is barely enough and then it can take a few weeks to catch up. You may not have a cold/flu yet - or you may be hatching something else. I had a UTI last weeks and the PMR flare started a few days before I realised there was something else.

    And there is always the spectre of the other sort of flare of symptoms - due to an increase in the activity of the underlying autoimmune disorder which also means you need more pred. 

    Don't panic - it does happen to a lot of people. It is almost as if the activity of the a/i part of PMR cycles - rising and falling over time but generally on a downward trend. If you happen to reduce on a downward period, you may have overshot as the activity increases again.

    • rocketman42
      rocketman42 EileenH

      Posted

      Yes apparently I should have stayed at 11 but somewhere along the line one has to try to reduce again if they are doing ok so that is what I did.

      What I find disappointing is that I went 3 weeks at 10.5 and was doing ok so psychologically I was happy I conquered the "next step" only to find out that I am not ok with it. I would have accepted it better if I found this out a few days after the reduction but after 3 weeks I thought I was "home free". 

      Oh well....could be worse. Will go back to the slightly higher dose and give it a try again in the near future.

    • EileenH
      EileenH rocketman42

      Posted

      I do know exactly how you feel - which is why I take about 5 weeks to do a reduction!!
    • rocketman42
      rocketman42 EileenH

      Posted

      Stayed home and tried to rest it out today. I experienced terrible cramping in my hands and feet. The good times keep rolling on. 
    • Anhaga
      Anhaga rocketman42

      Posted

      Last week I wore my lovely new winter boots, very comfortable, kept them on while keeping a chair warm at a little art gallery where I volunteer.  So they were on my feet for probably about 4.5 hours, including the time I walked to and from the gallery.  That night I couldn't sleep, my feet were cramping so much.  Who knows what triggers these things?  Hope you feel better soon.  

    • rocketman42
      rocketman42 EileenH

      Posted

      Thanks Eileen. I already take magnesium along with calcium and vitamin D. 
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