Very glad to have found this site. I am in Australia, female and 55.
I was admitted to hospital about 18 months ago for over 2 weeks with a severe one sided headache, noise and light sensitivity. After lots of tests scans, mri, blood and whatever else I was released with an undiagnosed headache. While I was in hospital nothing was helping the pain. The pain was so bad I could not sleep. Finally I had a 2-3 day Ketamine infusion and this actually worked and I was released.
Over the next 18 months I gradually became sicker and sicker. My GP ran a lot of tests and sent me to a lot of specialists. I got 1 diagnosis which is a small mass in my pancreas, this is just being kept under surveillance.
I suffer from sero-negative inflammatory arthritis which I take Imuran (azathioprene)
Up unil January this year I was also on Jurnista ( slow release hydromorphone ) 24mgs and 6 Endone a day for pain.
During my time in hospital 18 months ago we discussed the fact that with me being on high dose pain medication that it was hard to give me adequate pain relief. January this year I started reducing all pain medications , it has been a tough ride.
I am extremely proud of myself though because up until about 2 months ago my Jurnista was down to 4mg a day nd endone to 2 tablets a few times a week.
What led to Temporal arteritis diagnosis.
Symptoms --- utter exhaustion, I could easily sleep 18 hours a day.
--- no physical energy, to cook dinner was a major chllenge
--- drenching night sweats
--- waking at around 3am with a headache
--- waking feeling like I had a bruise on my head like I had banged it on
something during the night.
--- after a few weeks of waking with headaches, all over severe scalp
--- blurry vision
--- weight loss, no appetite
Next --- To cut a long story short, I was diagnosed with Temporal Arteritis about 7 weeks ago. I was put on 50mg Pred 5 days before a positve biopsy on my right temporal artery was positive for possibly treated Temporal Arteritis Remember I was on the Imuran which is an immune suppressant. ( I don't have the exact wording of the biopsy in front of me as we are away visiting our grandchildren
The prednisone has been like a miracle after 2-3 days scalp was a lot better, head was a lot better, energy was great, mood was great and I finally felt like eating. My eyes can still be blurry at times but after having them checked I have not lost any sight the blurriness is the prednisone.
So 7 weeks ago admitted to hospital by ambulance, 2 weeks later released. Saw a specialist Neurologist. His plan is starting tomorrow to wean the pred to 45mg going down 5mg I think it is every 2 weeks. I forgot to say my ESR and CRP are normal but they always have been even with the inflammatory arthritis, so the specialist said we will have to go on symptoms.
After a few weeks on the 50mgs pred my headaches started worsening again. Just over a week ago I increased the prednisone to 75mg for 3 days. After 2 days headaches were much better. 4 days after going back on to the 50mgs of pred my headaches are terrible pretty much constant. I am supposed to reduce to 45mgs of pred tomorrow.
The doctors where I live do not know a lot about TA and remember I am away at the moment. I will arrange to see a GP tomorrow remember we are away from home. I have no idea what they will say but I know in my own body the prednisone needs to go up not down. Any help or advice would be greatly appreciated. Thanks