IT'S HAPPENED - REMISSION WITH TOCILIZUMAB - OFFICIAL... - NRAS

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IT'S HAPPENED - REMISSION WITH TOCILIZUMAB - OFFICIAL

harryhunt
harryhunt

It's official! I'm in remission. Just got back from RD&E Hosp and pleasant trip to Teignmouth. My DAS score which indicates level of disease activity now below 1 and the magic remission line. Fully functional once again thanks to a new miracle biological wonder drug called TOCILIZUMAB. Still got to have the monthly infusion but this may soon change to a sub cutaneous injection. Piece of cake.

So a potted history goes a bit like this Diagnosed March 09. Less function than a baby and lots of pain, stiffness and swelling in all joints. Couldn't get up from a chair, in or out of a bath, turn a tap, dress, drive the car, walk to shops, go up stairs or do any normal household chores. Prescribed the dreaded methotrexate in May followed by hydroxychloroquine addition which gradually got me back to a reasonable state without any of the known possible side effects until last Xmas when I had a nasty chest infection which sent the old immune system into overdrive once again and things started to go downhill. That's when the hand of fortune took over and the chance to have Tocilizumab as part of a trial to monitor methotrexate withdrawal. I felt the effects inside two weeks, incredibly quick as these things usually take time. I wanted to share this with you because there is so much negative stuff out there and patients really need to hear the other side more often. There is hope and the prognosis for the future of sufferers of this serious, debilitating, destructive, life threatening condition gets ever better with every new discovery.

22 Replies

Oh Harry that is magnificent. I am do happy for you and with a score of 8.9 I have a bit of a way to go still but if u can do it do can I xxxxxxxx

What fantastic news! I am so happy/pleased for You. Just don't over do things because You CAN. Take care of yourself. It gives hope to all of us, rie x

That's brilliant Harry:-) are you completely off MTX and Hydroxy now, you mentioned phased withdrawal? If so, how long was it until it was exclusively the biologic you were on? I confess I have a particular interest as my rheummy is currently making a funding application for me to start on this

Hope the remission continues and so pleased you've achieved such a transformation.......

harryhunt
harryhunt in reply to Ronnie63

We'll be split into 2 groups at 24 weeks. One will have MTX tapered down. Whatever the trial result after finish am told can still come off MTX if Toc still doing the business. NICE have approved the drug here and NHS happy to prescribe it to failed TNF or MTX patients. I haven't been down the TNF road which helped me meet the requirements for Toc trial. Hydroxy stopped at start of trial. Don't think it did much anyway

So Pleased for you Harry. How long have you been on the trial? I too have been on this trial for 5 months now & although I am feeling a difference a long way to go me thinks!

Long may it last for you :)

harryhunt
harryhunt in reply to Lahnie

The improvements are slower in some but can carry on for years so I'm led to believe. I hope so in your case too

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Hi Harry, great to hear you're doing so well and that this has been so effective for you. It's good to hear positive feedback with regards to medication. I'm currently on Methotrexate and Hydroxy which is working fairly well so fingers crossed. X

Oh so pleased for you, Harry! That seems to have gone quite fast!! Now, as considered in remeission, do you continue with the drugs as is, or are some eliminated? I have seen other comments here that seem to assume you no longer take anything, but I think Tilda has recently shown you can't stop everything and stay in remission. I'd think, to stay in remeission, stay with th things that got you there. ? But, don't over do, you do still have the disease! All the best, Loretxxx

Hidden
Hidden in reply to lorann

My understanding Loret is that it is 'drug-induced remission', therefore remove the drugs and the disease will become active again. In the absence of a 'cure' then drug-induced remission is a great result:-}.

Cece x

harryhunt
harryhunt in reply to lorann

Quite right Lorann Still have to take the drugs. It's only clinical remission not full without meds which is cure. Better than nothing though

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Fantastic news Harry - Inflammatory Jack tko!

Cece x

great news.....i too went into remission on that drug but found that after 6months i started getting bad side effects.....just when i thought i was getting my life bach lol...had to come off it and now waiting to try something else.....hope it last for you its great to feel better xxxx

harryhunt
harryhunt in reply to kizzy12

I think they'll crack this completely before too long. Sure you'll get fixed.

kizzy12
kizzy12 in reply to harryhunt

thnx harry

Thank you so much for sharing that with us :) it's so fab to hear positive news and I'm so pleased you have your life back ...enjoy x

How lovely...it is good to hear good news..it brings a smile.

Thats great news.x

This is the most brilliant news Harry......you have your life back! These positive posts give us all hope. Thank you. xx

Well said Harry, so ermines we talk more about what is negative about treatment and don't say enough about the positive sides. We all have our history's with this awful disease and these history's can be helpful to others but we do need reminded sometimes that we should give more credit to the dr, nurses and scientist who all work so hard for us, to improve your quality of life.

Good news does us all good.....it tells us that really great things are happening to other sufferers. We all have a goal in front of us and that is to make our lives a near normal as possible. I know for myself my life isn't a a fraction of what it was like before I went on biologicals. I'm starting to reinvent myself and forming a life again, with certain conditions but I'm excepting of my life now......it's not going to be perfect......but I don't know anyone who has a perfect life.....do you?

harryhunt
harryhunt in reply to jeanabelle

No I don't, there's no such thing because at the end of the day no matter what comes the night

awesome! Thanks for sharing and congratulations

Wonderful news Harry, will be an inspiration to all. Thanks for sharing, long may it last for u

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