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.
Hello. Glad to see you. Well TCZ was life changing for me and no side effects !.
Long may it continue. xx
Hi I’ve been on it since September,best one I’ve been on xxx
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.
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.
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.
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.
Hi yes i take folic acid every day except on Methotrexate day,
Morning Mmrr ,
Have you gained any weight being on Tocilizumab ?
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.
Thank you ; much appreciated - and well done !
Thank you all for your comments, i havent stated it yet but it sounds hopeful,..... watch this space.....
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
Thank you, x
Starting new meds again 
RA Bad in Feet - But Feet Not in DAS - So No New Meds
to take meds or not to take meds...
no meds
