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HAD TO GO BACK TO 10mg TODAY

Posted , 5 users are following.

margaret22251
margaret22251

Last night my nech, shoulder back of neck and behind ears all started to hurt, then started with awful headaches, went to bed early, this morning had to take my pred 2 hours earlier than normal the pain and aches were so bad.

Went for my bloods doctor said go basck to 10mg till you feel well enough to reduce, so thats what i am doing, was doing so well i did the dead slow method, 2 weeks long with going on holidays, so will have another go when i feel better.

Got a copy of my DEXA SCAN 

limar spine T Score -1.2 Z Score 0.6

Rt Total hip -0.4 Z-Score 0.9

Lt FemoralNeck T Score -1.1 Z Score 0.4

Lt total hip T Score -0.2 Z Score 1.1

Osteopenic. Degenerative changes in the spine, a wide range of BMD values in the spine, the significance of this is unclear.

Investigations FBR,ESR,U AND E,LFT, BONE PROFILE SERUM ELECTROPHORESIS.

CONSIDER BISPHOSPHONATES.

Rescan advice in 2 years

I still feel as though i do not want to go on the Bisphosphonates, cannot see the doctor again for 3 weeks, so will have a word with her.sad

 

0 likes, 15 replies

15 Replies

  • EileenH
    EileenH margaret22251

    Posted

    With readings like that they would have to do a fairish job to convince me to take bisphosphonates - those readings are barely into the osteopeneic range and well above osteoporosis.

    However - it sounds as if they are concerned about the fact you have very mixed readings in the spine and it is possible to have the odd vertebra that has very low readings that could compress at a later date. I might be wrong - but I didn't think there was a lot of evidence for bisphosphonates doing much in the spine. I believe Forteo has been seen to rebuild spinal bone.

    Why not call the National Osteoporosis Helpline - I've been told they are really very good at talking you through what it all means and your options.

    • EileenH
      EileenH

      Posted

      PS - have you tried Bowen therapy? The neck and head pains could be due to tight muscles and the higher doses are enough to help, it certainly happened to me and Bowen did help a lot.
    • margaret22251
      margaret22251 EileenH

      Posted

      Many thanks Eileen, i have tried to find a Bowen specialist but it does not appear to any where i live, i have asked the massage lady who does my nails, and she had never heard of it, she offered to do massage for me, but also she has not heard of PMR, when i have my hair washed the young lady massages my nech and i do get some releive from it.

      I will try and ring the Osteoporosis helpline.I feel better now after speaking to you.

  • pauline36422
    pauline36422 margaret22251

    Posted

    margaret  some one does it in osset    cannot  remember  the  name  look on google

     thats if its  the wakefield  margaret

     

  • margo25238
    margo25238 margaret22251

    Posted

    thank you for these details, i am due for the scan and so hope to follow along with you

     

    • margaret22251
      margaret22251 margo25238

      Posted

      pleasedo Margao it will be interesting to see how we go, i am going to do 10mg again today, as not had a good day ysterday. All the best
  • pauline36422
    pauline36422 margaret22251

    Posted

    morning  margaret.  sorry to hear you  had to up  the  pred.to 10.  and i am here moaning  cos i have  decided to up  by .5.    to 1.5  because   around  4 am  i  get   aches in  the  muscle at the top of my arms, which are pretty bad.  but then when i have been up   an hour or so it goes.  so what that is i  dont know.  i am so scared i am going have a bad flare and  have to up  like you to 10, .just wheni think i am nearly ready to join club zero  it raises its ugly head.   this is the second time i have  got  down to 1 mg.    last time i upd to 2   this time i am trying 1.5.

       but the knees are still bad,    will ask for xrays when i see  doc on wednesday.

     

    • EileenH
      EileenH pauline36422

      Posted

      A pred dose of 2mg is very low and doing very little in the way of side effects of any sort - but it is obviously managing your PMR for the full 24 hours - the return of pain in the early morning suggests the 1mg isn't doing that. If I were you I'd stick at the 2mg for a lot longer and don't let a doctor persuade you it is such a low dose it can't be doing anything for the PMR!
    • margaret22251
      margaret22251 pauline36422

      Posted

      Hi Pauline, i am going to try 9mg again today, I find that my neck and shoulders are the only thing giving me aches, apart from the temple.

      When i was on ten full time the temple pain was a lot worse, but when reducing to nine this was 80 per cent better,started reducing on the 7th June on the 7th July finally 9mg full time kept to it on holiday, but when i came home it got worse(SHOULDERS AND NECK ETC) so went back to 10mg and now giving another go at 9.

      Ater i take my pred it takes about 2hrs for the aching to ease, but i put this down to withdrawls system.

      Had some bloods done this week so will see what they say, i know people dont set store by them but i will know if the results are either the same or higher than my last one in april.

      Take care. Mags 

  • pauline36422
    pauline36422 margaret22251

    Posted

    thanks eileen i think i will give it a go x
    • EileenH
      EileenH pauline36422

      Posted

      I'm on 5mg - my rheumatology-trained GP is perfectly happy with that. We'd be ecstatic if I got to 2mg!
  • pauline36422
    pauline36422 margaret22251

    Posted

    thanks eileen  and  margaret   thats why i   persivered  on 1 mg till my bloods were  done, . because with me   the  blood readings  seem to  be  correct.,  as my  journey on 1 mg wnet on  i eventually  had to  take   paracetamol   to help with the  pain.but eventualy  the para  didnt seem to  work,   but   yesterday no para  and  back on 2  mg  so we will see
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