Tocilizumab

[ann57]

Hi has anyone been on the infusion of Tolcilizumab as I am going on this new treatment ?

[Prairie]

Hi there I've got an appointment on Wednesday with my rheumy consultant and he mentioned this drug to me....like you I would love to hear anyone who has tried it or knows anything about it ??? X

[kizzy12]

hi , i started having infusions every four weeks have had six now.....no side effects that ive noticed ...the inflamation has gone down a lot but hasnt seemed to help me much with the pain....they did say it can take six months to have full effect...definately worth a go xx

[Hidden]

Hi

I've got friends who I've met at NRAS groups who've had amazing results from this drug.

I've had one dose off it, however I had a major allergic reaction to it so couldn't carry on with it unfortunatly , but don't be put off by my allergic reaction as there had been no one else on the drug company's list who had suffered such a bad reaction, I've so far had 8 other drugs and non off them helped reduce my inflammation markers and I had reactions to some off the others too however tocolizimab was the only drug that really reduced my ESR and CRP blood results after just one treatment it's just a pity I had such a bad reaction.

I've seen and heard great results from this drug so good luck with it

[Prairie in reply to Hidden]

Sorry to hear you had a bad reaction. It's scary when things happen as we don't know how our body's are going to react...I don't know much about it but I think this maybe the drug I have to try next....

[allanah]

I haven't had it, but hope it will be " the one" for you , hugs Axx

[jellisk]

I had it for a year but have now changed to something else. It worked for about 2 weeks out of each month, but the other 2 weeks were a bit of a struggle. No problems with the drug itself, no after effects or side effects, but a bit of a chore having to spend a day a month in the hospital.

[jayne17]

I tried this about 12-18 months ago, unfortunately I seemed to develop infections, skin and throat so had to come off it. We're all different is may suit you. All the best.

[tilstongal]

I am on it but just in a half dose as I have liver issues. It reduced the inflammation immediately but still quite a lot of pain. I have had 4 half doses. I feel it could work in time if I could get onto a full dose. My friend was on it for 5 years with fabulous results.

Good luck.

Tilstongal

[Claire13]

I have had 5 doses, everything else has not worked and this is the first drug that has actually reduced my inflammatory score! No real side effects bit of a headache next day! Had a raised LFT but they reduced my methotrexate to compensate! So far so good! But I have to say that it does not reduce the pain levels, which I presume are more about damage. However if it reduces the inflammation then that is what is important! There are so many treatments and it is all a bit 'horses for courses' So good luck! x

[Prairie]

Hi all does anyone know who have experienced taking this drug know if it helps with Fatigue???. I've heard people mention it helps with inflammation?? I know what works for one isn't the same for another but I've tried a few meds and they have wiped me out. Made me feel worse than the r a itself even though they have helped with my inflammation....?? I'm hoping whatever the next drug is maybe this one? Will help me feel less tired...x

[ann57]

Thank you everyone for your information it seems to have a wide range of differences for people who go on it, I have been put on methotrexate injections at a low dose as they said Tolcilizuamab worked better with methotrexate, I have mixed feelings about methotrexate because of the effects on the liver, had a strange reaction to it yesterday, I felt dizzy, my legs felt weak and very tired is this normal? I am alot better today and swelling in my fingers have gone down still feel a bit tired although that could just be the Rheaumatoid,