Thanks to my kind, thoughtful, and new found wise consultants who understand, all of you, I developed some patience, and am finding that time and rest from your wise counsel have lessened my GCA symptoms by about 80%. Learning that Actemra needs more time to lessen the inflammation was helpful, and gives me hope it will work for me. Now the fatigue has set in from this combo disease, but fortunately, I have time to take naps. My fevers have dropped to the 99.8 range instead of 100.6
PMR symptoms are gone. Since I have been on 60 mg Pred x a month, (and 50 mg. for one week prior, so high dose Pred for 5 weeks), might this be a good time to taper a bit? My second infusion of Actemra will happen in a week.
My rheumatologist had originally suggest a taper of 50mg. x two weeks, then 40mg. x 2 weeks, then 35 mg x two weeks with monthly Actemra infusions . Way too fast, right?! I'll be seeing him next week. He told me he respects shared decision making, so keeping my fingers crossed if I request a slower taper.
Honestly, I suspect he has seen very few GCA patients, because his infusion nurse told me she had never seen a GCA patient in her ten years of working. He was most helpful when I had to bump up to 60 mg. because of scalp tenderness and jaw claudication last month.
My neurologist, whom I saw last week, is trying to arrange for a temporal scan, but is unsure if the service is available. She also hopes to order a chest CT. Maybe to check for LVV?
Any advice is appreciated.
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Bummed24
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"My neurologist, whom I saw last week, is trying to arrange for a temporal scan, but is unsure if the service is available"
At this stage it is a total waste of time and money after so much pred and Actemra.
At 60mg pred I should hope PMR symptoms are gone!! That should happen at well under 30mg. Are your GCA symptoms now well controlled? After the second infusion I would certainly try to reduce the pred dose - try 5mg first, If that is OK, try another 5mg after a week or so. You can taper much faster than we usually talk about if you are on Actermra, that is the point of usuing it. But you DO have to give the Actemra a chance to start to work.
Yes, thankfully, PMR symptoms went away in January on 20 mg Pred. Then after disastrous advice to reduce to 10 mg rapidly from a former rheumy, my symptoms flared dramatically and I also then developed GCA symptoms. Higher doses definitely took care of PMR symptoms. It's taking a bit longer for GCA symptoms to disappear. But 80% better.
So I was wondering what guidelines I might follow to taper after my second dose of Actemra... because yes, I understand I can taper more quickly, at least initially. Drop five mg. or so each week, assuming all is OK?
I think it is a suck it and see thing - you have to find out what your body can take. Some people are very sensitive to changes in dose. You might be fine with 10mg every week but you might not. I personally feel every week is too much. In the clinical trials they had 2 tapers to be compared - one took 6 months to get from starting dose to zero, the other was 12 months. The details are on page 6 of this Appendix:
They did taper from 60 to 20 at 10mg per week in both before slowing down - but most of these patients were steroid-naive, they hadn't been on pred for long beforehand, and that makes a difference to the steroid-withdrawal effects when you taper fast. Five weeks at high dose pred is considerable but shouldn't be too bad if you start reducing now.
” shared decision making “ mmmm, from what I can tell is used when they have no frigging idea what would be the best answer, they want to pass the buck, and cost isn’t that much different.
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Tapering with gca okay 
GCA tapering
