I am today feeling totally confused, frustrated and bewildered. Any advise would be greatly appreciated please.
My story in as brief as I can. I was diagnosed with PMR in October 2015. This was after 6 months of living in pain. Which had started with a virus that took 6 weeks to clear. Following this "virus" I had hip pain, neck and shoulder pain and thigh and buttock pain.
During this time I tried an osteopathic clinic as the GP had thought I had a frozen shoulder. Anyway obviously this didn't help and finally in pain and tears feeling like I was 110 years old at 48 yrs the GP decided with all my symptoms it was PMR.
After the first week of steroids I felt great by comparison. I was however always concerned about long term steroids so I did always hope to be drug free asap. Although the GP did advise normal time for PMR to run its course was 2 years.
It's not always been a smooth journey, I had a flare in December and also had high eye pressure which has been checked at 2 eye clinics and eyes are good.
Currently I was down to 8mg and recently experienced temple headaches.
So this is the part I needed to get to.....I went to the GP due to headaches keeping in mind GCA. My blood pressure was checked and I was told it was high, so was suggested this could be the reason for the headaches. It was agreed to monitor for a month each week.
So today I returned to see a locum doctor and she firstly took my bp and said it was high with the machine reader (165/100) , so she then said I like to use the manual reader. 2 readings and it was (140/90 - 139/90) so she said no concern there. We spoke about PMR and steroids and she basically has said why was you told you have PMR. She said my ESR was never above 20, I have no family history, I was on the young side and finally I've never seen a rheumatologist. Adding that she suggests I reduce as quickly as possible my pred. I was down to 8mg she said drop to 5mg now for 2 weeks then to 3mg for 2 weeks then 1mg to stop. All the things I've read not to do ???
Finally she said long term steroids cause lots of health problems and I am a very young patient to use long term steroids. Also would be referring my to a rheumatologist as was confused at my diagnosis.
To say I am feeling completely confused, worried that I have been incorrectly diagnosed is an understatement :(. Have I just seen a GP who doesn't recognise PMR ?