Bad headaches

It isn't an arthritis specialist you want, this is a vasculitis, it affects blood vessels. Mind you - healthcare professionals struggle to differentiate between arthritis and arteritis which is inflammation in the arteries!

I think to be at 9mg after only 3 months is a bit low. Most good doctors would have left you at 15mg for 6 weeks, and 12.5mg for 6 weeks if that is how they went about it.

However, please can you tell us if you have any other symptoms of GCA, giant cell arteritis, besides headache. Where is the headache? Do you have jaw pain when you are speaking or chewing anything not totally soft? Any visual effects of any sort? Do you feel as if you have flu?

The headache is across the front or both temples, today the third day it is milder but still annoying. My sight seems blurred and thinking it was my glasses I have been to optometrist twice to have them adjusted but it's not the glasses as today my sight is still blurred slightly.

Living in a small town and with this Covert problem it's hard to see anyone.

i an going up to hospital to see registrar whom i know to see if he can help.

no jaw pain, no flu

addition to text:

i am in A&E to have ultrasound of head arteries.

back again, ultrasound clear waiting for blood test results

I have had it 2.5 years & I was put on a very high dose initially since my CRP was so high. It took me 18 months to go from 7.5 to 5mgs but I tried for 3 months to go down to 4.75 or 4.5mgs but my headaches & overall pain got so bad that I went back up to 5mgs. I can't remember the original dose my rheumatologist put me on but I was able to taper fast on the real high dose but hit a wall at 7/5mgs & was on that for a long time. Your body lets you know loud & clear if we don't give it enough mgs.. On thing that I didn't realize & didn't even tell my rheumatologist was that I was having severe headaches on my right temple area, behind my left eye,& even bad scalp pain on the entire top & sides of my head & someone mentioned that was GCA acting up & we have to be extra careful about that since we could have a stroke, go blind, or have a heart attack so you probably need a higher dose but have your primary check your CRP (c-reactive protein) which shows how much inflammation in the body. Why can't you see your rheumatologist until Sept.????? My primary isn't familiar with PGA/CRP either. It is ok to be afraid since they are such an unusual illnesses & our only drug has so many sides effects but grateful that I can walk again & that my shoulder/collar bone is gone. Reach out to everyone here since I think we know more than most doctors as far as what we are feeling & if it is from the PMR/GCA. Best wishes !