Tocilizumab or Baricitinib?: HI -- I've had RA for 1... - NRAS

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Tocilizumab or Baricitinib?

Squarefish1
Squarefish1
5 Replies

HI -- I've had RA for 14 years, diagnosed at 40. Have had a great partnership with Enbrel for over 10 years. They changed me on to Humira, an equivalent (as an NHS cost-saving). Not sure if that interfered with my condition, but suffered with swelling and pain, in every joint. This has been ongoing since May. They put me back on Enbrel, still with no positive improvement. Came off Enbrel as conditioned worsened, so started a new Biologic, Rituximab - two 6 hourly infusions, 2 weeks apart. This was supposed to last for 6 months. However, I have had no improvement whatsoever. They can't give me a new biologic until the 6 months is over (Jan), so I'm on 4 weekly steroid injections to tide me over. They are helping and I'm able to drive etc., but my consultant doesn't want to give me more that 3 of these injections.

I have been given 2 leaflets, so that I can choose which biologic to try next in January ! The two biologics are Baricitinib and Tocilizumab. Is there anyone who has had a similar experience and has responded well to Enbrel, had no reaction to Rituximab but success with Tocilizumab or Baricitinib? A long shot, but worth a try!

Cheers, Elaine x

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dwsurquhart

I had worsening symptoms on Humira, stopped it, got onto Kineret (Anakinra), daily injection for 49 days with no effect, got onto tocilizumab and could not be happier. Been on for almost 3 years now

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Maggsie

Just wondering why they changed you to Humira, was it because Enbrel failed?

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unitgym

Hi. I have only ever been on Humira and it has worked brilliantly for 7 years. Reluctant to be moved onto any of the cheaper medications that have been offered since the patent lifted.

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beeckey

Hi i have tried the same ones that you have been on without any of them helping much.Started Tocilizumab 5 years ago and it is the one that has worked best for me.Not great but a lot better than i was.I have just started back on it after a knee replacement and i have felt awful while being off it so i had a taste of how i felt before taking it.Hope it works well for you if you decide to go with it.Good luck x

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Leics

Hi although I haven’t had Humira I had rituximab infusions for about two years it took me three months to have any affect and then lasted for about three weeks and that could be because the weather changed from winter to spring and I got my pain meds sorted out better. Anyway I was very unfortunate that the few courses of rituximab knocked out my immune system and the awful consultant I had at the time said he couldn’t (or wouldn’t) treat me. Anyway thank god he retired lol. I now have a new fab consultant who after 6 years of no treatment other than pain meds was disgusted at the lack of treatment I’ve had for my RA I was as you can imagine in a pretty bad way barely able to walk was made to give up my job and a right sorry state. The good news I was started on baricitinib 2mg because of my immune system issues, about 12 months ago along with occasional doses of prednisone it’s been a game changer for me so much so I’ve been put on the usual dose of 4mg daily although I may have to go back to 2mg time will tell. It works very quickly you’ll notice the difference in a few days subtle at 1st but I had loads of inflammation to get at so to speak. No side effects for me either. I have just recovered from a really nasty virus which took a month to clear but the 1st infection I’ve had in 12 months. Even though I had to stop baricitinib for that time the inflammation and pain hasn’t been too bad not like before. We are all different but baricitinib is fab for me even with other health issues. I’m 56 by the way and was diagnosed in my mid 40’s.

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