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Update on my journey

Posted , 4 users are following.

helenemiles
helenemiles

My journey of PMR has been a scary one !

The advice and tips that I have received from this forum have helped so much on my bite sized road to feeling 'me again' ....well that might be slightly exaggerated .... But I am certainly feeling better in myself     

I have like others ,thought I new better and have tried to reduce my pred on 4 occasions with disastrous effects !!! 

I started on pred at the beginning of April 20 mgs and following medical advice did try to reduce by 5 mgs ...... Following Eileen's advice and that of others this was far too much . On my other attempts dropping 1mg at a time I can go no lower than 17.5 without the awful sweats returning within 12 hours , thumb,toe and hips flaring up again .

I have also been unfortunate and have fractured my foot .... 5 weeks ago ...went over on my ankle... The ligament popping caused the fracture !!! 

10 days ago I fractured a vertebra in my spine trying to pull my washing machine ....loud crack ..back to dependency upon others !

Despite these setbacks my awful symptoms of PMR boney pains and awful muscle pains and weakness appeared to improve greatly by about 80 % and do not feel ill within myself.

following numerous x rays and a dexra scan there is evidence of osteoporosis .... Not what I expected at 49 , no wonder I felt 95 smile

I was also referred to a haematologist as it is believed that I have hemachromostis .

I had my first consultation today and now require genetic blood testing as my ferritin levels are high . She also informed me that my calcium levels were high , this surprised me as I was only prescribed Adcal-D3 on the 19th May following the fracture in my foot .

has anyone else experienced such changing levels ?

Haemoglobin 159 

Ferritin 826 

white blood count high .

Im not sure that these levels are at all related to PMR at all . Think I am just unfortunate !

Full review with the rheumy 22 nd

 

1 like, 6 replies

6 Replies

  • EileenH
    EileenH helenemiles

    Posted

    I trust they did check your calcium before putting you onto the vit D supplements?

    High blood calcium is most often due to a parathyroid problem of some sort - and should have been checked when they found your low vit D. Simple Vit D deficiency is accompanied by normal or LOW calcium levels - high calcium levels suggest a parathyroid problem of some sort.

    http://www.parathyroid.com/ have a read. Especially the symptoms section - does it sound familiar?

  • EileenH
    EileenH helenemiles

    Posted

    Helen - I've sent you a private message. It sounds as if you may have a parathyroid problem - that leads to high calcium, low vit D. Did they not check the calcium levels before? 
    • helenemiles
      helenemiles EileenH

      Posted

      Hello Eileen 

      thank you for your reply , I really appreciate it .

      I am not sure if they did test my calcium prior to the vit d treatment . Think because I have felt so poorly I probably didn't even question it . I have stopped taking the Adcal from yesterday and have spoken to the GP today . She has not got access to the levels which were taken on the 9th prior to the haematologist appointment .... Different hospital and computer system !!!! 

      I will look at the link that you kindly provided .

      thank you again for your help .

      This journey has been awful and wouldn't wish it upon anyone .

      helene 

    • EileenH
      EileenH helenemiles

      Posted

      I suspect like quite a few I know you've drawn a bit of a short straw - you probably have a set of not very well known problems all appearing at the same time. 

      But things are looking up - you feel better in yourself and the bloodhounds are on the trail now. They should find something that rings their bells!

      Good luck - and do tell me how you get on. 

    • helenemiles
      helenemiles EileenH

      Posted

      Thanks Eileen 

      I think you are right .... 

      Commimg to terms with the patience required is not easy when you have been used to running around with all systems firing smile this I have had to learn as it hasn't come naturally .

      will keep you informed smile

      helene 

    • EileenH
      EileenH helenemiles

      Posted

      Many of us have trodden the same pathway - far too many "do-ers" in the PMR patient population...
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