Starting Tocilizumab

[Sunshine-star5]

Hello, mighty warriors 😃

Looking for anyone with experience of Tocilizumab (Actemra) infusions ….I’m due to start in a week, just read all the possible side effects ( as you do when starting new drug ) and so looking for people with experience of it good or bad , so I can be bit more prepared 😅

Thank you in advance for anyone who has the time to reply 😊

[wilbertjellyfish]

I had the injection you do at home a few years ago. Got a really bad infection pretty soon after starting it and it was stopped. Hopefully it's more successful for you.

[Sunshine-star5 in reply to wilbertjellyfish]

Arrr so sorry it didn't suit you 😔 hope you found something that works well for you 🙏

[wilbertjellyfish in reply to Sunshine-star5]

Sixth time lucky this Wednesday 🤞.Trying abatacept.

[Brushwork]

I have been using the injection pen with Tocilizumab for over 2 years, it’s been my silver bullet. I have had a few minor infections, nothing serious, also get a mild injection site reaction but take antihistamine to counteract it.

I was in a bad place before I started this, considering changing my lifestyle, but I have my life back. I do have occasional minor flares and I mean very minor and fatigue if I overdo things… but honestly, I’m very grateful for it.

[Sunshine-star5 in reply to Brushwork]

oh wow ! brilliant , lovely to hear thank you 😀

[davannh]

I had Tocilizumab for 10 years, first by infusion and then home injections. It worked brilliantly for me for the whole of that time. Then it stopped working!

A note of caution, this drug stops inflammation and most of your inflammatory markers will look normal. If you end up in A&E or hospital with infection etc tell them very clearly that you are on Tocilizumab. They cannot rely on these markers for diagnosis and need to look deeper.

I had excruciating stomach pain which the A&E doctor refused to consider as gall bladder pain because my inflammatory markers were normal. It turned out to be a badly inflamed gall bladder only diagnosed by an ultrasound.

After that I then carried a letter from my Rheumatologist explaining the problem, as serious infection can be masked by Tocilizumab.

[Sunshine-star5 in reply to davannh]

Thank you so much for your reply, I'm sorry it stopped working for you (hope you are controlled with another medication 🙏 ) And yes will definitely take your advice on board ! Thank you 😊

[wilbertjellyfish in reply to davannh]

That's really interesting as I had off the scale wbc and some other things when I was on it. (From memory) the GP couldn't understand why I was still functional. I hadn't been on it that long tbf.

[AgedCrone]

I always found starting a new drug convinced it would suit me was the way to go. Might sound like PollyAnna…..but I found putting anxiety & dreading every infusion out of my mind ….worked for me! Hope the Actemra works for you!

[Sunshine-star5 in reply to AgedCrone]

Yes absolutely , great advice thank you , I do try very hard to be grateful for the science and the medications 🙂 so fingers crossed it will suit me well 🙏

[AgedCrone in reply to Sunshine-star5]

If you think about it…we have no control over what works & what doesn’t …so the time to stamp your foot…or jump for joy…..is when you know which way it will go!

Yes thanks I’m 7 years in on Rituximab..& apart from Covid vaccination hiccups..all is going well.

Let us know how the Actemra goes!

[catpurr]

Hi, I have been injecting at home for years and found it has worked for me, it was the 7th drug they tried. No real problems for me. Good luck.

[Sunshine-star5 in reply to catpurr]

Brilliant , so happy to hear , thank you so much for your reply 😊

[Mojoint]

I’ve been having Tocilizumab infusions for 12 months now and it has been a life saver for me. It did however take a good 12 weeks before I really felt the difference so don’t get discouraged if improvement feels slow. Good luck I hope you find it helpful

[Sunshine-star5 in reply to Mojoint]

Thank you for your reply , much appreciated. I will keep that in mind 😊

[Golden87]

hi I am on infusions at the moment and it definitely helps however just be careful with your liver results. It has caused toxicity in me so they reduced the dose by 50% which provides some relief but not the benefit I used to feel. I had liver biopsies to check I didn’t have another autoimmune disease and for now I don’t but every now and again my liver does go abit sporadic. Infusions we’re definitely better than injecting myself though as I feel it gets into my system faster

[Sunshine-star5 in reply to Golden87]

Thank you so much for your reply , yes I shall take all that on board.😀

[fred42]

I had infusions once a month which worked really well, I had no side effects at all.After about 6 months my white blood cell count started going down so my consultant decided to change my biologic. I was quite sad as the Tocy seemed to be working well.I hope it works for you.

[Sunshine-star5 in reply to fred42]

Thank you , yes 🙏 it will work , sorry to hear you had to stop , hope your keeping well on the new biologic.

[Lynnels]

Hi! Been on monthly IV Toci for 7+ years now and it has been my lifeline. Honestly it gave me my life back having gone through all the others (Dmards etc) with no results yet plenty of side effects. First few infusions made me feel very tired for a few hours after but I was happy to live with that but as time went on my body got used to it and I was fine. About 2 years ago they decided to half my dose as they thought my ALT was getting too high ( saw a liver specialist and he wasn’t unduly worried as my liver scan was fine but gave me a max number for my ALT to get to and when I almost met that the rheumatologist reduced the dose) and it’s been ok (up from normal but ok) since. Now I just about get to the month without getting stiff. But otherwise absolutely no problems. Most of the time I’m very well on it. Good luck!! Let me know how you get on

[Sunshine-star5 in reply to Lynnels]

Wow , thank you so much. Wonderful to hear that its going so well for you.

Great that they check us re bloods etc, and so happy your able to reduce as that is my goal , get the inflammation under control then reduce ( as currently on steroids and methotrexate injection ) Ill take your advice on board and make sure I plan a rest following infusion. Thank you so much for your reply 😊

[Inanotherlife]

Hi there, how are you getting on with Toci? Hope you’re feeling some benefit.

I’m thinking of asking to change to it from Baracitinib which isn’t working that well. Best wishes.

[Sunshine-star5 in reply to Inanotherlife]

Hi, yes going really well, I've even come off steroids and methotrexate , wahooo, they wanted me to keep taking methotrexate but I stopped at xmas as had issues injecting and as they kept putting off my appointments , I just kept not taking it and the infusions have been wonderful , they have said my cholesterol has risen and is of concern -so keeping an eye on that, but feel the best I have since this RA diagnosis- let me know how you got on with changing meds as I realise you posted this a few months ago now.

[Evie3]

How did the infusion go?

I will probably be changed to Tocilizumab from Rituximab next year. Rituximab is working so well…I have a life…apart from constant chest infections, hence the change. I am scared Tocilizumab wont work and cant bear the thought of the incredible pain returning or having to use a wheelchair again 😭

[Sunshine-star5]

Oh gosh that's a shame as yes I have heard Rituximab is a great drug, and so sorry to here its caused problems - definitely worth trying Tocilizumab ( from my experience its been fabulous - and others on ward on infusion day seem really good on it too) let me know how you got on.

[Moomin8]

Hi, I've had both and preferred Tocilizumab, by weekly pen injection; it gave me my life back.