RoActemra (generic Tocilizumab)

[harryhunt]

Based on my short experience of this latest biological drug, I'd like to share a few facts with you all and for some at least provide a little hope.

RoActemra works in a different way from the other anti TNF biologicals by targeting/blocking a protein called IL-6 (Interleuken 6) which is heavily involved in the inflammatory process.

It also works without Methotrexate and is therefore useful for all those who can't take this powerful chemical. So all those who don't respond to anti TNFs or Methotrexate don't despair.

For me Tocilizumab is a miracle come true. In just under a month there is no trace of my RA except maybe a bit of left over flare damage which is not a problem. My inflammation markers ESR and CRP are 2 and < 1 respectively. I have very little pain, no stiffness and no swelling.

Further good news is that an injectable sub cutaneous option is soon available.

I am currently part of a trial to monitor MTX tapering v not and this is all paid for by Roche but after this finishes will still get this expensive drug free on the NHS now NICE has approved it.

Anyone who satisfies the criteria can now qualify for this brilliant new medication. If you haven't heard of Toc before please discuss this among yourselves and with your rheumy if you're in distress and feeling at the end of the road. There may be light at the end of the tunnel for you yet my friends. Never give up.

[alibromo]

Hi Harry i agree with you bout tocilizumab. When i started on it 14 months ago i was the only one on it when i went once a month. Now there is 4 of us. Esr has come down really good i still have a bit of swelling & stiffness but i can put up with it. I think giving up work has helped me xx Alison.

[harryhunt in reply to alibromo]

Great to hear Alison. May the progress continue

[Luthien66]

Hi Harry, this is really useful information, I'm on my first anti-TNF at the moment (Cimzia) and it looks like that it's not working quite as I had hoped (i'm still heavily dependent on steroids to keep RA at bay).

I can't take MTX because of the side effects. I'm back to see my rheumy nurse mid Nov and will go through this with her, but unfortunately where I live the pathway through NICE means I think my next offering will probably rituximab.

I'm also going to push for my ESR & CRP as my rheumy's have never really explained them properly to me.

Thanks for your uplifting blog.....and such a brilliant outcome. xx

[harryhunt in reply to Luthien66]

ESR and CRP are used as markers of inflammation. The differences in how they show this are not really very relevant of what's actually going on to us patients. C.Reactive Protein is a more specific and variable marker (some say more accurate) than Erythrocyte Sedimentation Rate which is a more general measure across a larger spectrum and doesn't vary so quickly. On my blood test results the range is shown as 2 - 10 mm/h for ESR and 0 - 10 mg/L for CRP. Older people often have higher ESR. It's enough for us to be aware of the range we should be in. Before Tocilizumab only steroids brought my values below 10. Steroids of course are bad news long term

[Ozzy in reply to Luthien66]

Just read your reply and I thought that you might like to know that I was on Hurmia which stopped working so I was put onto rituximab without mxt,which I had bad reactions too, and now 7 months later my rhummy is trying for funding for tocilzumab which the guidelines say that you do not have to mxt if you have had back reactions to it. So I now how you feel as I wanted to skip rituximab as well, because of not being able to take mxt and I had also read that it does not always work so well for zero negative people, I don't know if that's true but rituximab made no difference for me at all.

[Luthien66 in reply to Ozzy]

Hi Ozzy, yes this is what I'm a bit worried about if rituximab doesn't work!

Ah well, guess we just have to keep trying what's thrown at us!! :s

[cathie]

This is really helpful, I'm noting that you dont need mtx to make it work!

[miss]

Thanks for sharing very useful information xx

[Case]

Thanks Harry, very informative, will help us to have more informed discussions with our rheumy teams.

Have loved your blogs, will miss them. Hopefully you'll do an update every so often. All the very best.

[Wolf52]

Harry I am very pleased that toc is working for you. I have been on toc on/off for almost two years now. Toc certainly does bring the inflammation markers down, but for me, that does not translate into lack of disease activity. I still struggle a great deal as I have additional rheumatoid problems such as fibromyalgia and rheumatoid vasculitis.

I know of others who do well on this drug, unfortunately me not so much :(.

Nina

[kelli]

I'm sick of no treatment after I couldn't tolerate methotrexate, I found out that the clinic discharged me but I fought with another dr for an appointment and I'm bringing this up, how is it pronounced phonetically?

[harryhunt]

TOE SI LIZ UMAB

[Ozzy]

Thanks for the info especially the bit about it possibly becoming in injectable format as I am at present awaiting for Nice to approve me for this drug. I would say my fingers are crossed but only in my mind.

[Hils]

Many thanks for this news Harry. I am waiting to hear when I can start this new medication having failed on Humira. Does anyone know how long the cooling off period is?

[Ronnie63]

Hi

Do you have flu jab whilst on this? I have mine booked for the morning but my rheummy today told me he is putting me forward for RoActemra

thanks

Ronnie

[harryhunt in reply to Ronnie63]

yes. just had mine week after infusion. It's recommended as a non-live vaccine

[Ronnie63 in reply to harryhunt]

Great, thanks for the quick reply

[Neonkitty]

Does Toc work for severe RA/inflammation activity? I am hoping Humira (my second biologic which I have taken since mid August - first being Enbrel which worked for four weeks then suddenly stopped) will work. My ESR is always creeping back up to the 80's unless controlled with hydrocortisone shots. Great to know it has helped you so much, Harry.