Been on toci for 3+ years now. It is the only Med that has worked for me. It has made me retain water for the first 2 years so I took furosemide for 3 days after each infusion. I no longer need to take the furosemide. Feel much better as a result of the toci. I still have morning stiffness, I think it is because my bed needs to be replaced.
I will stick with it. It does seem to help and it is early days. I am self injecting with a pen, my nearest rheumy dept is 2 hours away, so infusions would be a pain. Fingers crossed that it will all settle down.
I have heard from some of my rheumy's other patients that they did not get the same relief with subcutaneous self inject as they now do with the Infusion. 5 hour return trip to have a 1 hour infusion is a bit excessive I do agree. Is there a medical office near where you are that could do the Infusion for you?
How interesting about the water retention, I'm having the same issue but never really connected it with the tcz. I'll need to speak to my rheumy nurse.
I do love this area. The weather is mild and the views are stunning. I see the Aurora, dolphins and whales, deer and red squirrels regularly. It's just wonderful. I wake up to a view across the firth to the mountains of the highlands. My dream retirement home...
Today I took my 12th monthly infusion of TCZ (450mg) and my rheumy says I am on remission, it took like 4 to 5 months to feel the difference, my CRP dropped from 80 to 4. I felt really lousy by the second month on TCZ, like you, my left wrist was hurting so bad I couldn't sleep properly. I totally recommend it, TCZ was the life changing treatment for me! I don't even need prednisone anymore, just the monthly infusion. No side effects.
I hope improvements continue. Saturday was beautiful down in Dumfries & Galloway but Sunday much less so; windy and wild and wet. I am in contact with a few folks up there eg Portsoy, Gardenstiwn and Cullen. Must visit when I’m fully recovered; Dundee first though, my youngest has lived there since Uni days. 💐
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