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