On Monday I had my first appointment with a rheumatologist. I was counting down the days and hours the previous week as I have been in absolute agony with all the pains in my body. My hands and fingers have been so bad over the last few weeks I have been out of my mind with pain.
I first became ill in January this year and was finally diagnosed in March with Polymylagia & started on prednisone which I only tolerated for 4 months before I came off on a fast taper under doctor instructions. I could not cope with the side effects on a daily basis whilst also working.
For the last 3 months I have taken nothing & tried to cope as best as I could. Some days were so bad I didn't want to carry on. I could barely move let alone function. The fatigue has been overwhelming and the stiffness causing so many problems.
At the appointment with the rheumatologist he only looked at my hands and knees, referred to 1 month old blood tests & pronounced that I didn't have Polymylagia but seronegative rheumatoid arthritis.
I didn't know what to say as the Polymylagia was diagnosed by a consultant at the musculoskeletal clinic and the head partner at my local GP surgery said I was a classic case.
The consultant gave me a depo medrol injection 120mg to help with the pain (4 days later & no benefit yet).
He then told me I would be on methotrexate for life. This was a drug I had already read about and did not want to take as I had read about all the side effects, diarrhoea, mouth ulcers and hair loss.
When I said as much he said I wouldn't get those as he would prescribe something to counteract that?
Well I am still suffering some of the side effects of the prednisone. I have chronic tinnitus & my hair is still shedding 4 months later. I can't afford to lose any more.
I don't know what to do. I haven't got the prescription yet as my latest blood tests aren't back & I'm waiting to see the GP who will be dealing with the meds going forward and ongoing blood tests.
Any advice would be gratefully received. Thank you.