Hello, it has been a nightmare for me since November. My rheumatologist retired in November. His partner took over and has canceled three appointments with him. He will not respond to any of my questions since I have not seen him. He refers me to my GP who refers me back to him. I have been dealing with my flairs and upping my prednisone then trying to go back down. I was doing ok for the last month at 7 mg. I am also on Actemera infusions once a month.
I went on vacation for three weeks and was not back in time for my four week infusion. I just had it yesterday at five weeks. My question is that I have very slight pain in my left side of my head. The usuals spot when I think I am having a flair. Should I wait to see if it works it way out or should I up my prednisone? I had to up it but don’t want to have an issues either. I have slight eye pain in both eyes but not visual issues. I also noticed that I am sweating more even when it’s not hot when I do any type of work. Today it was painting a room. I have had sweats for a few years thinking it was my thyroid, my doctor did tests and now says they do not think it is related. I have read that people with GCA can have night sweats. Is that true in the middle of the day.
I feel like I am just waiting for something bad to happen, lose my sight of have a stroke.
I am starting to get very depressed. I never really felt this way before.
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Plains
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The sweats are often mentioned on here…I dripped like a tap/faucet on higher doses, & now it’s signs of a flareup for me, as the ‘sweats’ return! If you search you will find plenty of posts!
Only half of patients with GCA on Actemra get off pred altogether. The other half require some pred ongoing although it is at a much lower level. 8-10mg/day is typical.
This is because there are at least 3 mechanisms that can be causing the inflammation in GCA and Actemra only works on one of them, the IL-6 cytokine. It may be nothing to do with the delayed infusion although infusions were not trialed for GCA so a lot less is known about using them in GCA. There have been people on infusions who were encouraged to extend the interval and it worked so far - 8 weeks seemed to be a bit long. If the GCA is still fairly active then it is possible that the combination of the other mechanisms and a barely contained IL-6 activity can cause a flare in symptoms if the Actemra is a bit late.
However, your current replacement rheumatologist is being extremely unprofessional - it is HIS fault you haven't been seen by him. They are keen enough to demand GPs don't manage patients but in that case they must step up to the plate. If it were me, I would seek another rheumy - and yes, I know that isn't easy either - and I would seriously consider turning up at the office and requesting you be seen asap, no more cancellations. Either way - you are working with an unknown doctor but your current one seems less than reliable if anything goes wrong.
I have been looking but most are not taking new patients and the wait time is 6 or more months. I am going to show up at the office tomorrow and demand to see the doctor!
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