Tocilizumab....Actemra for PMR ???
Posted , 11 users are following.
Got a sharp new rheumy who offered a potential option, as I complained about by "old man walk"
Does anyone here have any experience or knowledge about the injectable or infusable drug Tocilizumab, commercially known as Actemra, for treatment of stubborn PMR. I've had PMR for 18 months, tapered to 5 mg pred, now bumping up to 5.5, as I'm having foot swelling and some increased fatigue. Additionaly, I had( before pred) and have marginally sero-negative esr and crp. And no apparent typical rheumatoid joint degradation. 65 yo male, in the USA. much thanks.
0 likes, 10 replies
Chirsy42210 Danrower
Posted
lodgerUK_NE Danrower
Posted
Currently there are worldwide trials taking place on TCZ, some of the in hospitals in the USA. These trials are to see if TCZ is ok with GCA (sister of PMR).
Mayo Clinic will have details of the trial or just use your search engine and type in TCZ trials for GCA.
EileenH Danrower
Posted
Follow this link
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
and nearly half way down the first post is a heading PMR-GCA Scotland and a link. Follow that link and on the left, under About the conditions, you will find Research and Clinical Guidelines. Click on that and about 2/3 down that page there is a link to descriptions of the tocilizumab trial, one for medics and one in lay-persons language. The first trial is for GCA, there are mutterings about one for PMR but I don't know if it is being done. Tocilizumab is rather more expensive than pred - so I can't see it being of great interest for PMR (in the UK at least) since it isn't without risks itself and personally I doubt whether low dose pred is worse!
I know a few people who found the "old person walk" lasted for some time - I probably had it 3 years ago but I certainly don't now.
lodgerUK_NE EileenH
Posted
I also would stick with pred.
Danrower EileenH
Posted
This stubborn damn roomate, PMR, moved in and won't leave. He has horribly abusive and unpredictable manners, and makes me take him wherever I go. My first bout lasted 1.5 years, and was planning on a remission about now for my 2nd bout.
EileenH Danrower
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linda17563 Danrower
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rocketman42 Danrower
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I know I'm renewing an old thread here but I'm curiuos if anyone has had any further experience with Actemra. My Rhuemy, who is at one of the institiutions in the U.S. who conducted the small study, is now suggesting it for me.
Hate to replace one poison with another unless there is a very good chance of beating this thing.
Thanks in advance.
jean39702 rocketman42
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EileenH jean39702
Posted
It will be difficult - more recent joiners won't get notifications of these posts because they aren't "following" the discussion and it is newer people who are more likely to be on tocilizumab/Actemra as it is a new development. You would be far better starting a new thread and asking for experiences.