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Changing to tocilizumab

Hi All,

I posted a couple of months ago asking how long it takes Benepali to work. It didn't work after more than three months so now I'm going to be changing to the unpronounceable tocilizumab. Anyone had good results with this? The rheumatologist suggested changing straight away and now I feel a bit guilty because I had a moan to my GP about the local rheumatology department and she's referred me elsewhere.

Anyway also got a short course of steroids so I can walk more than a few steps for the first time in months and am rejoicing in the temporary magic!

Hope you are all having a decent day!

Terryx

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Tcz changed my life ! For the better x

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That's fantastic to hear! Really hoping this one works for me! Did you notice improvement quite quickly?

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I was 8 years trying different dmards and biologics and combinations. I take leflonamide, still 2mg prednisolone orally per day but tcz monthly. I saw a difference within a few weeks! Delighted and hope it continues to be this effective. Gone from a wheelchair to walking Agsin. Delighted! Amd luckily no side effects , in fact i lost weight with bring more mobile and not so fatigued. Good luck with yours!

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Thanks so much for replying - that's so encouraging! Haven't been able to move without severe pain for 18 months when my last steroid jab wore off! Nothing has worked for me so far so I'm really hoping but trying not to, of course. It's great to hear you've had such good results . How fantastic for you! Hope it carries on working for you.

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Well I never thought anything would work for me ...but it seems I found the cone!

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That's brilliant news!!

X

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Mine too!

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That's terrific! So glad it works for you! Thanks for replying.x

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Hi, The same happened with with me on Benepali. it completely stopped working after 3 months and I am now taking Toc which has made me a whole lot better for the first time. I pronounce it tocky zilla mab which seems to go down Ok. My Gp told me there had been a recent article in a Rheumatology journal saying it's the biologic that is getting the best results now, overall. So good luck with it. ( For me the improvement began after a couple of weeks ).

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Thank you Rosey! It's good to hear that people have done well on it! I will work on the pronunciation! :D

Hoping for good results!

Fantastic that it's working for you - must be amazing! Long may it continue!

Terryx

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I Just call it TCZ!

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Good news, and don't feel guilty, look after yourself that's what is important.

Beneplai isn't working for me, I have a review 2 weeks tomorrow, which can come fast enough. I'll mention tocilizumab. This forum is fabulous.

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Good luck for tomorrow! I hope you get someone who'll listen to you properly.I know you've been disappointed in Benepali too, so wishing you all the best in getting a new one that works. I'm really hoping this one will do it for me but haven't even started on it yet so I won't know for a while. I'll keep you posted!

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2 weeks tomorrow, let's hop it goes quickly

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Misread that. two weeks is bearable though. Keep your chin up till then! x

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This is the biologic that has worked the best for me, I had previously been on Enbrel and Humira, both of which stopped working after 2 1/2 years and 4 1/2 years respectively. I had results in 24 hours with the tocilizumab (I just refer to it as toc) and it’s still doing a brilliant job 4 years later - my CRP is currently 1. Good luck 🙂

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Wow! That's amazing! Mine was 87.9 last check. And that's after it's gone down a bit. Often well over 100. :( Really hoping. Thanks for replying!

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My CRP was 167 when the Humira stopped working. The toc brought it down to 35 after a month then it’s been 1 since then.

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Wow! Fantastic!

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Hi there,

I've started 3 and 1/2 years ago a medical trial on toccilizumab. It started working but slowly. After the trial ended I continued on it and my RA has been under control since then. For the first time in nearly 4 years I haven't had a flare. I inject myself once a week. Also it's the only medication I take, got rid of everything else. Good luck. Ne x

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Thank you! This is my dream. brilliant for you! x

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I have had great results with tocilizumab (Actemra). My crp numbers dropped hugely once I started on toci. I went from a crp of 159 down to around 1.0 in a month and a half.

I had tried all the DMARDS with no success and then Humira, and Anakin. All with no relief. Once I started on Toci, I started to feel way better. I have now leveled off and am started to lower my dose amount. I started on 600mg IV every 4 weeks, dropped it to 480mg after 4 months, then to 400mg for a year and a half, now for the last 2 months have been on 280mg. Still feeling alright with the lower dosage.

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Fabntastic! Long may it continue!

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I am coming up to being on Toci for 6 years in the next couple of months and agree with everyone else in terms of my bloods they have all dropped to lower than 5 each month which is amazing. Where i have been on holiday and not had my infusion on time (maybe gone for 7 weeks rather than 4) my bloods do spike. But everyone is different on each drug so don't be disappointed if it doesn't work there will be something that does work for you. Sorry I just don't want you to be disappointed if it doesn't work for you. Good luck.

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Yeah, I'm trying not to get too excited because I've had my hopes dashed before. I haven't responded to drugs that have worked brilliantly for other people, so I know it may not work for me. But it's encouraging to hear that people have responded so well on it.

Oh well, fingers crossed. If not, as you (and my consultant ) say, there are others if I don't improve with this one

Glad it's worked for you though, and thanks for replying.x

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I was on Actemra (tcz) for seven years and it was a godsend. I was pain free and lived a pretty normal lifestyle until it stopped working. I had the same experience with Remicade (infliximab) for seven years until it quit working. I guess my body has a seven year rejection cycle, lol.

I was then put on Humira for 3 months and it caused complete havoc, headaches, body aches, night sweats, etc. I am now on Kevzara (sarilumab), just one injection so far, and it seems to be working well.

The moral is, pay attention to your body, if something doesn't work, move on to the next. Each of us are different and there ARE options out there that work.

Good luck and keep us informed as to how you react.

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Also, I failed to mention, I felt the results within 1-2 weeks. Pretty amazing stuff. Remicade is awesome as well.

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Thanks! That's been the frustrating thing for me - because appointments with my rheumatologist are so few and far between I feel like I've been needlessly taking drugs that don't work for much longer than necessary. Hence the moan to my GP.

Fingers crossed and hope you get past seven years this time!x

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I had tocilizumab three times last year, it worked immediatetly for me within a week. But I had tearing stomach pain every 40 minutes even in the midnight. The intolerate side effects made my doctor took it off from me.

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Oh no! How disappointing - and painful - for you. I hope you find something that works for you without the awful problems. We just never know what these drugs are going to throw at us. x

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If drugs don't seem to be working for you get straight on to the rheumy secretary to arrange an early appt with consultant. Don't bother with GP, or suffer in silence.

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I've tried but it feels like the whole department at my local hospital is falling apart. No help-line and it's impossible to get through on the phone - I've been on hold for over an hour before now and then have no idea if my messages are ever passed on because no-one gets back to me. I've never once had a email answered. Even my GP has had trouble getting through to anyone there.

That's why my GP offered to refer me to another hospital. The medical staff themselves are very good but the dept is under stress. Hoping the other hospital is better.

Thanks for the advice - it's very difficult for people to be assertive when they feel unwell so I think far too many of us just put up with it all.

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Well that's appalling. Hope it's not in Norfolk, where I live. I have to say that Guys in London are pretty good at responding.

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No you're ok! West London.

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I hope you find somewhere better but I'd advise against St George's. They're just as bad. Still waiting for a nurse to get back to me as promised in October.

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That's terrible! It's really frustrating. It's not as though we just ring to bother people or for fun. Since the helpline closed at my hospital it's been awful. I needed advice about stopping meds for urgent gallbladder surgery and in spite of emails, phone messages, and phone calls no one ever replied. It leaves you feeling completely unsupported.

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Unsupported is the exact word I've been using. And then the GPs (luckily mine are excellent) are left picking up the pieces.

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Exactly. I feel very lucky, too, that my GP is so good.

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Try Guys! Good luck!

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Hi, I’m in a similar situation to you, over the last two years, I have tried and failed multiple DMARDs and Beneplai (whilst that gave a little relief to begin with, it stopped working all together after around six months. I have just had my second monthly infusion of Tocilizumab today. After the first one I felt improvement very quickly but within days fell into a big flare. This gradually settled and with a 7 day course of 20 mg Pred under my belt I am feeling pretty good. I was over the moon when my bloods were done before today’s infusion it showed my CRP down to 3 and ESR to 6! I couldn’t believe my eyes!!! Good luck to you 🤞🏻🤞🏻🤞🏻🤞🏻xx

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Encouraging stuff! I hope it keeps on working for you - and that it works for me. I'll let you know! Thanks for replying!x

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Tox has been the best drug I've taken in 20 years. Out of all the other drugs it works very quickly, I noticed a reduction in swelling after two injections. I love the fact I've got rid of the sickly methotrexate on this drug. I got excited when my CRP dropped to 1 within a month but my rheumy advised Tox will knock the CRP reading right down and is an inaccurate marker on this drug.

I have everything crossed for you that it works a miracle for you too with no side effects. Best of luck x

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Thank you very much! How terrific that you've had good results finally. I'd really love to give up Mtx too. Any improvement would be fantastic. The short course of steroids I'm on has reminded me how liberating it is to just be able to go and make a cup of tea. So, here's hoping. In spite of past disappointments, it's so hard not to get excited.....

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Try and keep positive and hopeful that tox will work out great for you. Sending hope that it is a winning drug for you x

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