Since my first consultation, and having to have a rheumatoid factor test, I had researched rheumatoid arthritis. I knew exactly what it was, how it was treated and what to expect.
The hospital had been sending me copies of the letters to my GP, including the results of my MRI scan on my hands.
My GP had told me that there was effusion in the joints in both of hands my at the 1st, 2nd 3rd and 4th metacarpophalangeal joints (MCP) aswell as the 1st carpometacarpal (CMC) joints on right hand… the left hand MRI scan revealed degenerative changes to the 1st carpometacarpal (CMC) joint.
Google is your friend so they say, so I googled it all to understand what was happening. However I was in for the shock of my life, at my consultation..
The rheumatoid factor test came back negative.. so that ruled out Rheumatoid Arthritis. Deep down I had geared myself up to accept this and just thought what would be would be.
After examination and going through my symptoms, I was diagnosed with Polymyalgia Rheumatica…. What the **** is that? I have never heard of it yet alone say it.
Never in a million years, did I think I would have to be put on steroid treatment. I think a lot of what the consultant said went straight over my head.. and he knew it.. he kindly wrote down for me the dosage I needed to take and for how long before the dosage was lowered, until it eventually went down over the course of 3 months from 20 mg to 10 mg Prednisolone.
He said that he wanted to see me in 3 months time to see how things go, and explained the side effects of taking steroids and how long I could be taking them for… he did warn me that it could be for quite a while and it might even mean for a lifetime should I suffer any flare-ups when the medication is eventually stopped.
To say I was shell-shocked was to say the least. The poor nurse had to run after me, cos I just said, “Thank you” took the paperwork and said goodbye, and I forgot the prescription. The consultant gave me a leaflet to read and to be honest.. panic ensued me when I read in the leaflet that people with PMR (Polymyalgia Rheumatica) can end up with what they call GCA (Giant-cell arteritis) which if left untreated can lead to blindness.
The leaflet said:
Giant Cell Arteritis
PMR is sometimes associated with painful inflammation of the arteries of the skull. This is called giant cell arteritis (GCA) or temporal arteritis and needs prompt treatment as there’s a risk of damage to the arteries of the eye. About 20% of PMR patients also develop GCA, while 40-60% of patients with GCA have symptoms of PMR.
The symptoms of GCA are:
- Severe headaches and pain in the muscles of the head
- tenderness at the temples
- pain in the jaw, tongue or side of the face when chewing
- pain or swelling in the scalp
- blurred or double vision
Great.. apart from feeling like shite, I know have the prospect of the chances that I could get GCA and would have to go through a biopsy on the side of the head by the hairline next near the temples.
So I am now praying, that I don’t get headaches or double vision. Tomorrow will be my first day of the Prednisolene. My god I am going to rattle by the end of the day.
So now I start my journey of learning to live with Polymyalgia Rheumatica.