Biosimilar and side effects/allergic reaction

[Mouseling]

Hi allI have just had my 3rd injection of Tyenne Biosimilar after being on Tocilizimab since approx 2019.

My skin has become much more sensitive in the last couple of weeks. I have had a rash on my neck and chest, and now my arms. I also have been feeling prickly on my head and getting hotter than normal in the sun.

With Tocilizimab I knew to be careful of sun sensitivity, using sun screen, a hat and covering up. I didn't have any major skin reactions, unlike previous biologics Enbrel, Humira which I couldn't continue because of skin reactions.

So I am now wondering if this change to Tyenne is causing an allergic reaction/side effect.

I have read that others have found a change to a Biosimilar can cause problems.

What are my chances of getting changed back to Tocilizimab I wonder now that my NHS Trust have made this switch. It seems a coincidence for this to happen suddenly on the different drug. Feeling fed up, I was doing so well on Tocilizimab. Thanks for any thoughts. 😊

[Brushwork]

Hi,

I am due to be changed from Ro-actemera to tocilizumab to Tyenne tocilizumab biosimilar in the next couple of months and it scares me as it was my silver bullet. I’ve been pretty much in remission.

I honestly don’t think there’s a choice, the NHS are very unlikely to fund the Ro-actemera version, simply due to the cost.

I hope the reaction you are experiencing goes away… When I started tocilizumab I took antihistamine for a while as I had a slight cough and a localised itchy skin reaction, it helped and then I didn’t need it when my body adjusted.

Fingers crossed for all of us facing this change.

[aliplayspiano in reply to Brushwork]

Yes this concerns me too. I have been on Ro-actemra for 6 years and it has made such a big difference. So far I haven’t heard anything about being switched to the biosimilar but am suspecting it’s only going to be a matter of time. I am worried that the biosimilar will not work as well or will cause more side effects.

[Mouseling in reply to aliplayspiano]

I have been put back on Tocilizimab because of the allergic reaction, but waiting for delivery, a month in all without meds and now getting RA symptoms after being so well for so long. Feeling fed up

[Mouseling in reply to Brushwork]

Thanks for your reply, I am restarting Tocilizimab because of the allergic reaction I have had. I hope the biosimilar works for you ☺️

[Paula-C]

I was told a few years ago I was being switched from enbrel to a biosimilar drug. Enbrel had put me straight into remission , no side effects and I didn't need any pain relief at all, as you can imagine I wasn't very happy at all about switching. I did my research into biosimilars, the cost difference (not much at all) and typed up notes stating NICE's statement about biosimilar drugs, my reasons why I was refusing to be switched, cost comparison etc etc., and handed them in for my consultant to read. I'm happy to say I am still on enbrel, I wasn't switched. I've read numerous posts from people on various RA groups who after being switched were put back on the original due to side effects or the bio drug not working as well.

If your not happy about the switch the day so, it's your health and wellbeing that's at risk here. The last thing I said in my typed notes was that I should have some say in what toxic drug I have to inject into my body each week because I have to live with the consequences of it.

Nice ststement

[Mouseling in reply to Paula-C]

thank you for your reply. After speaking to my Consultants Secretary I am restarting Tocilizimab but waiting for delivery…RA symptoms coming back after being so well for so long… years…feeling very fed up

[Paula-C in reply to Mouseling]

Really pleased for you. Hope things improve soon.

[Mouseling in reply to Paula-C]

Thank you 😊

[Portinatx17]

I am on Methotrexate and a biosimilar Amgevita inj every 2 wks. After only first injection , my skin on my arms legs and feet reacted. Initially told by RA pharmacist to stop for 2 wks to see if resolved., didnt. One year on, off 4 wks pre TKR and 2 wks post op, no skin problem! Told by Gp its just body reacting but worries me as so many reasons for rash which is very often itchy and more so with warm weather. Dont think medics really understand what side effects we go thro and just dismissive. Tried E45 itch relief cream which helps a bit, thinking of asking for Piriton from Gp?

[Mouseling in reply to Portinatx17]

I would speak to your consultant again. Skin reactions seem to be one of the commonest reactions to a lot of medication..all the best