Actemra (Tocilizumab) - fantastic results in the first month
Posted , 18 users are following.
I started self-injecting Actemra 4 weeks ago. My PMR was still very active despite 10mg of pred and 20mg MTX.
My CRP was sitting at 20 and not budging (yes, I know it's not awful, but it's not wonderful either lol).
Three weeks after starting the Actemra injections, my CRP is ONE!!
Yep - ONE!!! It hasn't been below 16 since diagnosis!
And I'm feeling well!!! I've even managed to get through my daughter's drama filled wedding and not fall in a big heap!
To say I'm impressed would be an understatement!
For more information you can try Googling "tocilizumab" and "remission" to get some quite readable articles on the early trials of using Actemra to treat PMR.
1 like, 74 replies
Lizfor FlipDover_Aust
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mimi1950 FlipDover_Aust
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Hope your spectacular improvement sustains , thank you for sharing.
EileenH mimi1950
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The Phase 3 trial is finished apart from the long term follow-up to get some idea of how long the remission lasts so I'm fairly sure there are no trials recruiting at present. They were only for biopsy-proven GCA anyway. There have been a couple of tiny pilot studies in the USA with PMR patients - I assume driven by the company so getting funding is likely to be very difficult for PMR elsewhere.
Susanne_M_UK FlipDover_Aust
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I'm so happy for you, Flip! Such great news. Xx
MrsO-UK_Surrey FlipDover_Aust
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What wonderful news, FlipDover! TCZ has certainly been looking very promising for those with GCA and, if it also proves successful for PMR, then whoopee! Your experience is more proof perhaps of just how close PMR and GCA actually are along the vascular spectrum....or how many cases of diagnosed PMR are actually GCA! Stay well!
cheryl74384 FlipDover_Aust
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Anhaga cheryl74384
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If you google tocilizumab as Flipdover suggested you will get the information. It is a very expensive drug which has not yet been approved for general use in treating PMR mostly I suspect because it costs hundreds if not thousands of times more than pred.
You should wait to find out what your definitive diagnosis is, at least as much as your rheumatologist will be able to determine when you've got that pred dose down.
Tocilizumab (brand name Actemra) is used for RA and has recently proven helpful in clinical trials for treating GCA.
EileenH FlipDover_Aust
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maid_mariane FlipDover_Aust
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Mariane
FlipDover_Aust maid_mariane
Posted
I'm still on 20mg MTX, but I suspect I'll be stopping that after my next consultation with the Rhuemy. I'm dropping pred at .5mg a week (my decision) with no side effects. Currently down to 5.5mg daily.
I have no idea how long I'll be on Actemra - the free trial only goes until Sept 2017, so we'll have to see if that pushes me into full remission by then.
alward FlipDover_Aust
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My dad has gotten approval to start this drug after the first of the year. I"m praying that it has a similar afect for him and will help him reduce his prednisone. It is wrecking havoc on his body.
EileenH alward
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alward EileenH
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FlipDover_Aust alward
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I was skeptical, but I sincerely hope he has the results I've had so far.
stella-dk FlipDover_Aust
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I´s so great to hear you are doing well on Actemra. You give hope for many. I wish you all the best in the future.