Diagnosed 28th May2016 in hospital started treatment 29th May 100 gm steroids for 3 days then started infusion with trial drug Actemra 600mg once a month for 6 months then been on 75mg Prednisolone. Sent home on the 3rd June to take 50mg 4 days later pain in jaw then went back to 75 mg P. Had second infusion with trial drug next day started on 60mg Prednisoline been good for a couple of days pain in jaw come back but a couple of panadol settles the pain and I get good sleep the pain always come between 1 am & 3Am does anyone else experience this? spoke to Doc and we might look into pain management. Yep got the moon face that is something to get use too have read some of all discussions and been of help trying not to gain too much weight. My left Occuluded common carotid artery and a stenosis at the left subclavian at the origin.
Be good to chat with anyone else who has what I have I am 52 and they say this is rare for my age?
I got PMR and suspected GCA at 49. It went away at 52. Than came back last september at 63.
It's possible that you may be one of the people who need an even higher dose for a short period of time to completely deal with the symptoms of GCA. The good thing is that once those symptoms are dealt with it seems that people are able to reduce to much more manageable levels relatively quickly. What you don't want is to be yoyoing, so best to get the symptoms properly controlled before starting that reduction. Hopefully one of the experts will be on here soon to give you more detailed and helpful advice.
ouch!
sounds like you need the higher dose of pred for a while longer. Other pain meds probably won't touch the sides.
Thankyou for replies for the first night in 11 nights had no pain the Endep has worked with taking 50mg and the dosage of 75mg Prednisolone is all working feeling on the right track. It is amazing how you in yourself know when the disease is flaring in your body cause I can feel it settling down hope this makes sense.