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Roller coaster !!

Posted , 8 users are following.

helenemiles
helenemiles

I have attempted to try and reduce pred from 20 mgs to 15 as I am currently in limbo re diagnosis ......

yesterday was a really bad day .. Mobility rubbish and felt under the weather , a bit like I was running a bit of a temperature , shaky and poor balance .

woke very early ... Awful pain back in my big toe joint and left thumb .... 2 hours have taken my pred  .. Pain easing 

I have found that during my journey ... When I have felt very unwell in myself it seems to follow with a different area being 'attacked '

is this an experience others share ?

today I feel better in myself , despite the discomfort and the deep pains in my hips and lower back appear to have eased .

i did have a session on Thursday with a Bowen therapist which I would really recommend to others .

not sure if all this is coincidental ???

love to hear from you all 

Helene 

1 like, 19 replies

19 Replies

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  • ptolemy
    ptolemy helenemiles

    Posted

    I was told to reduce from 20mg to 15mg, it was a disaster. I went back to 20mg for a while. 
    • helenemiles
      helenemiles ptolemy

      Posted

      It's awful isn't it ????

      what I have found during this journey is that each day is different !!!

      not sure what I'm doing really !!!

      but I have had to learn to be patient !!! Maybe not one of my qualities ...... The lack of energy , pain and poor mobility has made me have to stop for the first time ever !!!

      my spinal surgery was a breeze compared to this .

      make sure you take care of yourself x

      helene 

    • ptolemy
      ptolemy helenemiles

      Posted

      I do wish my rheumy had told me there would be problems and not said the pred would solve everything. I just kept thinking that there was something wrong with me.
  • pat38625
    pat38625 helenemiles

    Posted

    Hi Helen,  sorry to hear you are in pain.  I have been reducing by 2.5mg every 6 weeks from 20mg, then 17.5mg then 15mg and at present am on 12.5mg of pred and yes a few aches and pains in muscles but cannot compalin really.

    Eileen is the lady who can answer your question on Bowen Therapy.  Good luck.  Pat

    • helenemiles
      helenemiles pat38625

      Posted

      Thanks pat .

      i found the Bowen therapy amazing , I think my pains and balance are due to trying to reduce to 15 mgs .

      i have another session booked for Wednesday .

      im wondering wether I need to go back to 20mgs ???? 

      Lovely to hear that you doing well at the moment .

      take care 

      Helene x

    • EileenH
      EileenH helenemiles

      Posted

      I would go back and then try reducing in much smaller steps.
  • June29649
    June29649 helenemiles

    Posted

    I am new to all this but have PMR a year and 6months your symptoms sound just like mine pain in my toes and thumbs also dizzy and poor balance, I am hoping I will get lots of advice from this site x
    • helenemiles
      helenemiles June29649

      Posted

      It's awful !!!

      but I have too say I am in a better situation than I was 3 weeks ago .

      the symptoms are extreme and took over my whole body ....

      started in my  big toe , left thumb then both elbows ... Felt tired etc then like an alien invasion suddeny attacked my whole body !!! 

      I have made considerable progress since being on pred but trying to reduce appears to have relapses in the pain and mobility . 

      Not a journey I would wish upon anyone .

      this forum has kept me going through difficult times.

      its lovely to know that others have shared the same experiences and have offered fantastic advice and support .

      keep going juney x am thinking of you .

      helene 

    • June29649
      June29649 helenemiles

      Posted

      thankyou for your support having a bad day today unable to do anything for dizzy feelings back pain etc . I have a doctors consultation in the morning. so I need to sort out my steriod dose

      Juney x

  • EileenH
    EileenH helenemiles

    Posted

    Don't try to reduce by 5mg at a time - it is FAR too big a step. No reduction should be more than 10% of the current dose, 5mg from 20mg is 25%. Many people even struggle with 10% but it is more likely to work.

    Other than that - your session with a Bowen therapist probably will have woken up a few sleeping dragons! The things they do will release the cytokines from the trigger points in your back - the same cytokines that cause PMR in general when they are all through your system - and cause more generalised yuk. Did s/he tell you to drink lots of water? Did you? I always felt better but worse if you see what I mean the next day - but never as bad as she told me I would feel! And it is very common for balance to be off after a Bowen session - your body has to get used to a new balance set up.

    • helenemiles
      helenemiles EileenH

      Posted

      Oh thank you Eileen x

      that is  was my thought of going back to 20 mgs , but a little unsure when to consider a reduction . I have now got 2.5 mgs from the GP on Friday so I could go to 17.5 but so unsure ..... When ........

      the bowen therapy was amazing , within half an hour I could feel the pain in my hips and back easing .

      i am back again on Wednesday , would recommend it to all .

      she used Emmett (not sure if I have spelt it correctly ) technique and within my session the immediate change I noticed was with my balance . 

      Cant really describe it , but I felt more balanced ... Grounded for the first time in about 6 weeks . 

      A big thank you for your recommendation , it offered release from pain , and has improved my coordination and balance by 50% Didn't skip out but felt so so much better .

      helene 

    • helenemiles
      helenemiles

      Posted

      I forgot to mention the difference I noticed in my arms ......

      although quite painful during and following my session ,the following day I was very aware that they I did not appear to be experiencing such deep painful muscle pains . Was able to lift the kettle without it feeling as if I'd been weight lifting . 

      Im converted smile

    • EileenH
      EileenH helenemiles

      Posted

      Apparently it isn't unusual for clients to leave a session and bounce off the walls walking down the corridor! My lovely lady always warned me to be careful!

      I recommended it to someone on another forum and gave him a video link - immediate response was "sounds like a load of hooey"! This from someone who had booked a session of acupuncture!

      An NHS Trust in the NE of England is trialling it alongside pain management for a period, like acupuncture has been offered in the past. I just hope it meets with the approbation I've come across.

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