Hi, I was diagnosed with GCA 23rd July this year, however I think I'd had it for quite some time as I had symptoms which I was attributing to other causes. I have had back and neck pain for a long time since a car accident. Also night sweats which I put down to post menopause. I'm 69 now and have always been Mrs 100 miles an hour.
It was only when I got jaw and tongue pain when trying to eat that I went to my family doctor, who, fortunately for me quickly realised what was wrong and gave me an urgent referral to the hospital within hours of blood tests results.
I had a TAB and was put on 65 mg of prednisolone. This had gradually reduced my symptoms to an occasional stab of pain. Jaw pain reduced to a mild stiffness when I really chewed something. Neck pain disappeared as did night sweats, and as did waking at 4:00 am with blinding headache and nausea.
I had around 7 weeks at 65mg and then finally saw the rheumatology specialist at our local hospital. He said my bloods when I first went to the urgent referral were high,107 for the ESR, but he didn't tell me the CRP.
After 7 weeks on 65mg y blood levels were fine.He told me to reduce the prednisolone to 30mg immediately then get another blood test in 2 weeks and if that blood test was OK to reduce to 25mg and see them in 2 weeks after that.
I spoke to my Family doctor and he was horrified at the steep reduction, to the point where he authorised a repeat prescription but said he was not prepared to state such a low dose so he just put 'as directed'.
After 4 days on 30 mg I was a quivering wreck. I was shaking all over, the veins on the backs of my hand and forearms stood out like ropes, and I felt as if something was gently gripping my wrist, and I was getting more headaches. I phoned rheumatology helpline and they said go for another blood test and increase dosage to 40mg, which I did 9 days ago. This second blood test showed ESR and CRP to have gone up.
I had another blood test 5 days later and ESR had gone within normal ranges but CRP was till raised although it had fallen a little.
I was still on 40mg but I can feel the symptoms creeping back. I spoke to my Family doctor yesterday and he said he still thinks the step down was too quick. He advised me to call rheumatology and tell them how I was. I called them but they haven't got back to me and now it's weekend.
The last two evenings the blinding headache has come back and I've felt like my head was going to explode.I confess I panicked and put myself back on 65mg as I feel like I'm rapidly going back to square 1. I have another week before my next appointment.
Sorry to rattle on, but I would very much appreciate your wisdoms.