Tocilizumab

[bassiefromholland]

Anyone on Tocilizumab/Roactemra.

What are your experiences with it, and has it a lot of Side effects?

XxBas

[farm123]

I was on infusion Toc nearly 2 years ago. Had 3 infusions over 4 months as I had to miss one due to Toc taking neutrophils down. Other than neutrophils there were no other side effects and actually with neuts down I felt quite good but they would not continue as it was taking so long for them to come back up. Farm

[bassiefromholland in reply to farm123]

Tthanks for your reply. What do you use now.

Bas

[shazbat in reply to bassiefromholland]

Hi Bas I have been on this drug 6 months. It's great. I have had most of the biologicals with various side effects, the Cimzia made me really ill, couldn't breath and the skin started peeling from my fingers. This is totally different, I have had the infusions for past 6 months, drink plenty of water when having the infusion. And it helps with the fatigue. I start on the injections next week. Hope this helps.

Shaz

[bassiefromholland in reply to shazbat]

Hi Shazbat,

Thanks for your reaction. Hope I will experience the same results!

Wish you all the best.

Bas

[Rosie_rabbit in reply to shazbat]

Hi Shaz,

Just looking at Tocy threads and picked up that you're about to start on injections.

I was told by my consultant when he said they were sketching me to Tocy that I would go straight onto injections. As I've been struggling the specialist nurse said they would arrange for an infusion to tide me over whilst they sorted out the injections.

However when I went for the infusion on Wednesday the infusion nurse said that the injections weren't available yet and I would have to continue to come in for the infusions. she said it may have just changed but this was the last she had heard and the consultant was always saying that patients would have the injections when they weren't available.

So, when I got back I rang health care at home to see if they did supply Tocy injections and they said they didn't yet.

Just wondering who you got your injections through as someone is clearly wrong at the hospital and it would be good to know if I can get the injections or not as it would be so much easier than the infusions.

Thanks so much

Rx

[shazbat in reply to Rosie_rabbit]

Hi Rosie it depends which health authority your in. Some have already switched over too injections. Mine is Pennine Acute Trust Hospitals covering, Rochdale, Oldham, North Manchester and Bury. I'm the first in this Authority, I'm told most authorities will eventually transfer, I pursued mine as you can see. It's Bupa who do Toczilimab. And I have to say despite some of the reports I have seen they have been excellent. I was put on the system last Thursday. They went through my set up for deliveries Friday, when I said I was going abroad and needed a letter I received that Saturday morning, interestingly it says in the booklet that the injections can go through the X-ray machine. Then my injections were delivered this Wednesday. Pursue it if you want the injections. And the Head Pharmacist for this authority who deals with the biologicals has been fantastic.

Hope that helps

Sharon

[farm123 in reply to bassiefromholland]

Now on 200mg hydroxychloroquine and Abatacept self inject although just had 10 weeks off due to knee replacement and hairline fracture which occurred during placement so hoping to be able to restart at the end of the month. Farm

[tamnwill]

Been a life saver for me. No side effects. Good luck x

[tamnwill]

Yes, sorry, it can lower your neutrophils, which is the marker for your immune system. If they go below 1.4 then they can withhold the infusion until they come back up again. Eat well, try to avoid others with infections/viruses as much as reasonably possible. If you need antibiotics whilst taking Toci then they won't administer until 1-2 weeks after antibiotics have finished. they won't administer if you need dental work either. So keep you teeth clean and take a multivitamin every day if agreeable to you to help boost your own immune system. My neutrophils are usually low, 1.4 to 2.8 usually so I need to take care. But having said all that, I enjoy a much better quality of life now. x

[bassiefromholland in reply to tamnwill]

Thanks for the advices. I take mulitivitamin and also 3000 Mg vitamin C extra. And try to eat as healthy as I can! Wish you all the best, your answer was very helpfull

Xxfrom Holland!

Bas

[tamnwill in reply to bassiefromholland]

Very welcome my friend.

[Patsy-57]

Thank you Bas, due to start this soon and read the replies you got. Hope it helps us both.

Patsy

[bassiefromholland in reply to Patsy-57]

Hi Patsy,

Yesterday 15 th of may I have had my second infusion with Tocilizumab, I had no Side effects, I hope I will get results!

Do you allready know when you start?

[Patsy-57 in reply to bassiefromholland]

Hi Bas,

I am really pleased that you have been ok so far. I am still waiting I was told it could take 2 months. I just hope I get the go ahead soon. I will let you know when I start.

Patsy.

[Kah4]

Hi Bas

I am on Tocilizumab and have been for about a year now. It has changed my life considerably. I do not have any side effects but know I need the infusion after about three weeks (have it monthly). For me it has been brilliant

Kevin