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Fatigue and aches creating back in

Posted , 14 users are following.

elizabeth40672
elizabeth40672

Hi All

I'm down to 12mg and up until a few weeks ago was feeling ok but am feeling now as if I am running on empty. Is this because of PMR or the reduction of pred? I have beginnings of muscle ache in my upper back and can feel soreness in my neck. It is not bad at the moment but it is there. Do I stick on 12mg and hope if settles down or continue with the slow reduction to 11mg because this is just how I am going to feel as I reduce? 

I feel a fraud because I am not as bad as some on here. I am working and do not feel I have to stop and rest during the day but just feel tired all the time. I also feel that it would make no difference if I went to the gym or not. My body seems to be saying no, my head says keep going. Sorry just needed to get that off my chest! 

0 likes, 27 replies

27 Replies

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  • Reeceregan
    Reeceregan elizabeth40672

    Posted

    Hi Elizabeth, 

    I'm not going to be much help, only to say I'm at the exact same stage as you at the moment, so I can certainly understand where you are coming from. I've gone from 50mg to 17.5 which I've been on for the last 2 weeks and I am not handling this dosage at all. I have both GCA and PMR so I'm confused as to whether my return of some symptoms are the result of a flare, withdrawal symptoms fro pred  reduction, or actual pred side effects as some of the things happening are new, as well as the return of a higher level of pain and loss of energy,difficulty walking far etc.  We have some absolute gems on here who will be able to steer you in the right direction. I'm sure it won't be long and we will both be back to battling along as best we can in our  journey as we live with managing this hiccup as best we can. X

    • elizabeth40672
      elizabeth40672 Reeceregan

      Posted

      Thanks for your reply Reeceregan, it is good to know others are on the same journey and are struggling with the same problems and thoughts. You are right there is lots of support here and I did get some good advice. I hope your journey fairs better soon. 
  • Bethune
    Bethune elizabeth40672

    Posted

    I think I am similar to both of you.. kept getting stuck or worse from 5mg on.. had to go back up to 20mg  pred. again. Doc tried Actemra... seemed to help my PMR but worsen my RA as I got sclerotic tendons ,  also got extremely itchy hands and feet.  I'm now on  Cimzia,  much of the itchiness went away , but PMRis worse,  I am very uncomfortable with lower back, buttock and now hamstring / thigh soreness as well as neck, and ongoing headache though that is lessening.  It also seems to be causing water retention with heavy slightly swollen feet and calves, feeling dizzy and itchy.  Ice soaks have not helped much. I'm working on adjusting diet for water retention. I Don't know whether to get off Cimzia or try it longer.  So far only discomfort, side effects, and no less , actually worse PMR symptoms.  I see my doc tomorrow.

    But like you I remain very active and usually do  best when I am,  but this last month, not so much.

    Sorry this is Not helpful but does sound somewhat similar.  I'm thinking of asking doc to get off meds , all but pred... boost my pred and then do DSNS method of coming down.. thoughts?

    • elizabeth40672
      elizabeth40672 Bethune

      Posted

      Hi Bethune, thanks for your reply. It is always good to hear others in the same position. Not that you would want anyone to be where I am but you know what I mean... 

      I hope your dr appointment went well and you were able to make a decision about your meds? It is a tough one and it is about finding what works for you. the DSNS method was working for me and I just need to slow down a little in my life, stay at 12mg for a little while and then continue. I realise this is not a race but I am not a ver patient person so that is another tough part haha. Good luck with your journey.

  • pauline11822
    pauline11822 elizabeth40672

    Posted

    Hi Elizabeth. While I was reducing I sometimes had this too. I had a very good dr who let me manage my reduction myself mainly. So if I had side effects I basically was told to go back to the dose I was comfortable on be patient then after a few weeks (4 usually) I could try again and it worked usually. However we are all so different. I am off Pref now (10 weeks) but another illness seems to have triggered my symptoms.

    Good luck you need to find what works for you but the main advice is slowly slowly catch this monkey!

    Pauline

    • elizabeth40672
      elizabeth40672 pauline11822

      Posted

      10 week off that is great! so it is possible. I hope your recent illness do not bring PMR back for you. I need to heed your advice and stop being so impatient, it is just not in my nature to take things slowly smile I hope you are feeling better soon. 
  • sandy65909
    sandy65909 elizabeth40672

    Posted

    Comparing yourself to others weakens your self esteem! Our symptoms vary from minute to minute and are totally beyond control. Tapering is a journey that requires patience which is not readily available to some of us. I am reducing 1 mg per week and went from 25-20mg so far. I also feel the slight return of pain in my shoulder to elbow area. I will see if it gets better or worse and modify Pred dose. I am learning from others on this site that there is no reward for martyrdom and drugs must be taken to relieve the pain. 

    Stay in touch with progress or status even if it seems to be going backwards! 

    • Bethune
      Bethune sandy65909

      Posted

      I was also doing 1 mg a week but have always had flares, so now Im going to try the Super slow method that I learned about on this forum.  Good Luck to you and all with their  tapering. 
    • EileenH
      EileenH sandy65909

      Posted

      1mg a week is too fast from here on - you won't know if the dose you are at is still enough. Slow down! 1mg every 2 weeks may be OK as far as 15mg though...

    • elizabeth40672
      elizabeth40672 sandy65909

      Posted

      Hi Sandy I agree I do not like to take things slowly and that is a lot of my problem. I will stick on 12mg to see how I am over this week and then if I am not feeling better will increase again. I have had good and bad days this week so maybe it is just a settling down period... Thanks for your reply! 
    • Bethune
      Bethune

      Posted

      What is the highest daily dose of pred anyone has been on, and for how long at high doses?
    • Reeceregan
      Reeceregan Bethune

      Posted

      Hi Bethune, I started on 50mg (I have both GCA and PMR with every symptom of both quite severely by the time of diagnosis). I remained on this dosage for 9 weeks before my rheumy started me on tapering. I'm only down to 17.5mg and stuck, so will stay on this for another week, then go back to 20mg if no,improvement. Then I'll start the DSND method rather than the schedule I'm on.  He is trying to find the lowest dose I can tolerate and then I'll stay on that dose for minimum 12-18 months more, then see what happens after that. He is in no rush to get me off it, just to find my lowest tolerable dose. What a ride! Hope it comes with a helmet. I see a few crashes along the way😜

  • nick67069
    nick67069 elizabeth40672

    Posted

    If you  have to work, then it will take higher dose of pred to overcome PMR limitations.  Everyone is unique and you have to pay attention to your symptoms and how your body reacts to reduction. Latest study pointed out that average PMR "session" lasts 5+ years... How much difference does it make if you are on 12mg or 11mg in the time frame of 5-6 years? But it makes big difference in how you feel NOW.

    Be nice to yourself and take enough pred to manage properly your PMR symptoms. It makes no sense to try to go "below" the threshold and suffer from symptoms or even worse cause flare. If 12 mg is what it takes, what difference does it make if you stay on 12 mg longer? except  you may feel better.  I think you get the point.

    • elizabeth40672
      elizabeth40672 nick67069

      Posted

      You are so right Nick, thanks for your good advice. It was the talking to I needed smile
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