New Meds

[nellysgran]

Hi everyone, hope you are all feeling well, its been a long time since i was on here, but today my Consultant is changing my injection to Tocilizumab, to start in 2 weeks, just wondered if anyone else is on this and how they are finding it.

Thank you, stay safe.

[allanah]

Hello. Glad to see you. Well TCZ was life changing for me and no side effects !.

[springcross in reply to allanah]

Long may it continue. xx

[rab1874]

Hi I’ve been on it since September,best one I’ve been on xxx

[peejay74]

Me too been on it a number of years with no side effects and I've been through a number of biologics with lots of side effects. Good luck.

[Mmrr]

I'm just going into week 5 of tocilizumab and have not experienced any benefits at all, early days I know.

I've had a lot of oral problems since starting it, raging thrush, ulcers....but they seem to be reducing now, so I'll plod on.

Time yet.

[Juliesb in reply to Mmrr]

Do you take folic acid? I was told to take it for mouth ulcers. Been on for 2 years now and very rarely get any mouth ulcers.

[Mmrr in reply to Juliesb]

Yes, I've had folic acid for years, had the thrush treated 3 times mouth washes , the list is endless.

It is most definitely tocilizumab related. I go through the same sequence of mouth issues every week.

Methotrexate was the start of the oral problems I have, they have never really gone away despite no MTX for well over a year now.

[nellysgran in reply to Juliesb]

Hi yes i take folic acid every day except on Methotrexate day,

[weymouth321 in reply to Mmrr]

Morning Mmrr ,

Have you gained any weight being on Tocilizumab ?

[Mmrr in reply to weymouth321]

No, in fact I've lost weight, but I have been eating very healthy for the past year or so and don't drink alcohol or eat anything sweet. In total I've lost a little over 50 pounds.

[weymouth321 in reply to Mmrr]

Thank you ; much appreciated - and well done !

[nellysgran]

Thank you all for your comments, i havent stated it yet but it sounds hopeful,..... watch this space.....

[Katiecatweazel]

Hello to Nellysgran! My experience with Tocilizumab is good and I hope you find it good too. I started early November 2019 and my CRP was <-1mg/L when I was last tested in March. The Biologic nurses want a cholesterol blood test every 3 months as cholesterol can go up on this medication. So far mine has gone up slightly. The injections I put in my stomach once a week. Following the instructions but I had an experience twice where I couldn't make the pre filled pen work, however looking back I think perhaps I wasn't patient enough. Sorry to go on but I hope this gives you confidence. ATB

[nellysgran in reply to Katiecatweazel]

Thank you, x