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is this pred withdrawal?

Posted , 11 users are following.

shirley40391
shirley40391

After about 3 years of treatment for PMR I am finally at 3mg predisolone but i have started to feel very strange. Feel sort of flu - ey in my body, I can suddenly start feeling very hot. Also I can feel light-headed and very tired and generally not quite right.

No pain but can be a little stiff in bed and when i first get up

Trying not to panic that it may be something nasty....

Any thoughts or experiences gratefully received.

I have made an appointment to see my doctor next week ( first available)

0 likes, 23 replies

23 Replies

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  • Michdonn
    Michdonn shirley40391

    Posted

    shirley40391, far more knowledgeable people are on the for forum than I, the main symptom is fatigue, but I do believe some people do experience flu like symptoms. Good luck and the rest of your journey. Think positive! 🙂

  • liz12234
    liz12234 shirley40391

    Posted

    Hi, I am also down to 3mg and worrying too! I was stiff in the mornings so starting taking my dose at 3 or 4am and found it much better. I have decided to stick with 3mg for a month and not go to the 2 1/2 as on the dsns. I also have been more tired than usual and had a few headaches but I try to not panic and think the worst and it usually works. Hope you feel better soon, we are all on this journey together.

     

    • Michdonn
      Michdonn liz12234

      Posted

      liz12234, you can be fexible listen to your body. I am on a modified DSNS, if I have a bad day I just plan on e extra days on old dose. I hoping it works for me. Good luck, think positive. SMILING 🙂

    • shirley40391
      shirley40391 liz12234

      Posted

      thanks for your kind reply. I am mostly try and think positi ely but occasionally have a bit if a panic.

      This forum helps a lot!

    • shirley40391
      shirley40391 Michdonn

      Posted

      Thanks for the info, worth discussing with my doctor I think.

      Thank goodness for you guys on this forum!

      Helps a lot not to feel so alone.

      Thanks again fir taking the timd to reply

    • Michdonn
      Michdonn shirley40391

      Posted

      You are welcome shirley40391, the forum is a huge help on this journey. Stay positive, get that smile on your face. 🙂

  • Anhaga
    Anhaga shirley40391

    Posted

    How long have you been at 3 mg?  If it's been a few days I'd suspect PMR activity.  If you've just reduced, give it a couple more days and see how it goes, but don't wait too long, especially if you feel worse, to increase slightly. I've just been told by a doctor, not my regular GP, that I should take a higher dose for two weeks and see if I can get rid of all my "niggles" and lower blood test results.  I've been managing very well on 1.5, but the blood test has been indicating inflammation too high.  I confessed that I'd had niggles since I was at 9 mg. eek  I think if I'd had this doctor as my regular physician I would have been monitored a little more carefully.  The locum even asked me if I had trouble standing up, and when I said, sometimes, she told me I really should take more.  I think she also suspects I might not, but I'll see.  Too bad I can't keep her as my doctor, but not possible....

    • shirley40391
      shirley40391 Anhaga

      Posted

      Thanks for taking the time to reply and for the information.

      I feel I have come a long way and don't want to mess it up now

  • daniel08939
    daniel08939 shirley40391

    Posted

    shirley40391,

       I got to zero prednisone in a little uinder three years and had three years where I felt very healthy and strong without prednisone and no symptoms. I wish I new why I used the reduction that I did but I an not aware of why I reduced as I did . The bottom line was I was able to reduce fairly quickly until I got to 4 MG. At 4 mg I was real slow and it worked but I do not know why I reduced as I did.

                  Symptoms started     July 1, 2010

     

    Date                Dose            Days

    3/1/11              10 mg            78

    5/20/11             9 mg             30

    6/20/11            8 mg              30

    7/10/11            7 mg              20

    8/4/11              6 mg              25

    9/24/11            5 mg              30

    10/24/11          4 mg              90

    01/.24/12         3 MG             90

    03/18/12          2.5 MG         163

    09/12/12          2.0MG          174 

    3/23/13            1.0MG             24

    5/2/13              .5MG               38

    5/18/13             0  MG             16

    As you can see I dropped basically 1 mg per month until I got to 4 mg and then it was very slow to get to zero.

    • shirley40391
      shirley40391 daniel08939

      Posted

      Thank you so much for the chart which I will take when I go to the,doctors.

      I am finding this last bit quite difficult as I am mostly not in pain but generally feel awful most days and definately very tired. Then then worry starts about could it be something else? Should I be going to the doctors? I try very hard not to bother them.

      Thanks for taking the time to reply I do appreciate it

    • maggie67878
      maggie67878 daniel08939

      Posted

      Hi Daniel

      I shall also be taking your chart when I next visit my GP! I started on 30mg Pred at the beginning of this year. My ESR was 42, rather than the normal 5. Thanks very much. 

  • jan21306
    jan21306 shirley40391

    Posted

    I also have had PMR for 3 years and am down to 6.5 mg.   I have similar problems to you.   I get light headed, feel a bit fluey, can feel the heat rising in my face from time to time and have had funny feelings in my head and feel strange/odd.    I also feel anxious that there is something else going on sometimes.

    I get very fatigued at times and have aches, especially in my hands, fingers, ankles and shoulders.  Paracetamol is no help at all.   My doc listens and is very kind, but there is not a lot he can do to help !

    • Twopies
      Twopies jan21306

      Posted

      So...do you think it's the prednisone or the pmr? This is something I struggle with all the time.  For me, it is life limiting...and hard to explain to others just what is the matter with me.  I'm on 6 mg pred, having bombed out when I tried to reduce from 5 to 4 1/2, using the dsns method.  I've been back at 6 mg. for 13 days, plan to stay on it for a total of 30 days, then will try 5 1/2 all over again.  

    • jan21306
      jan21306 Twopies

      Posted

      I think it is probably a bit of both.   I also find it very life limiting.   I felt better the first six months I was on Pred, but now have problems daily with different side effects.  My doc says I am ultra sensitive to medications,so even .25mg change up or down has a profound effect on me.   

      My social life is almost non existent.  I spend a lot of time on the phone !!  I am staying on 6.5 for six weeks and then will try 6.25 again.

    • Twopies
      Twopies jan21306

      Posted

      This helps me immensely.  Thank you so much.  You know what it feels like to be on this journey.  A daily struggle.  And at least for me, isolating because I can't predict from one day to the next whether I will be able to halfway function.

    • shirley40391
      shirley40391 jan21306

      Posted

      Thanks so much for replying. I get so much strength from talking to others who have this condition and are on these drugs.

      My experience with my Rheumy have been disappointing to say the least and my doctor is sympathetic but has nothing much to add as she seems to know less than us.

      I feel a lot calmer knowing that you have had the same symptoms

      I know how this impacts on us all. I over did things last week and have had to cancel everything this week.

      I will keep smiling though!

    • jan21306
      jan21306 shirley40391

      Posted

      It is always comforting to know that someone else has similar symptoms/side effects.    It can be very lonely having a chronic illness, especially one which few people know about and which can make us look healthier on Pred than we really are. 

      I never know in advance what I will be able to do, so I don't make plans for the future.   If I am having a reasonable day then I take advantage of it, but it doesnt happen very often as I get fatigued so quickly.   I am finding that hydrotherapy is helping me.   Just gentle exercising in very warm water seems very beneficial.

       

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