Tocilizumab

[Vonnie10]

Hi I started my tocilizumab injectiins yesterday was woken up by upper stomache pain that is not going away and needed the toliet a few times.. if anyone is on this did this settle down for them.. I'm.hoping its coincenedence or it passes..its known for causing stomache problem diverticulitis is common.. how long if you had this issue did it pass? Its early days i know .. the last drug option for me except for ivi in it.. hoping its not the worst scenario.

[allanah]

I've been lucky. No side effects xx

[Vonnie10 in reply to allanah]

Al I'm hoping it's a coincidence and if nit just atimy hiccup 🙏

[allanah in reply to Vonnie10]

Hope so but of course see someone if it gets worse xx feel better soon x

[ruth_p]

It could be coincidence and you could have just got a bug. If it doesn’t get any better then I would contact your GP or 111. I’ve been on toc for five years and haven’t had any side effects.

[Silverpixie]

At the time I started tocilizumab it was my last hope after 6 years of awfulness. I also have autoimmune hepatitis but was still prescribed it. I have been on it it for almost 4 years and it has been truly life changing. I have no side effects apart from a couple of infections and oral thrush over the years. I hope it is a coincidence but do try not to be anxious as this will make your stomach problems worse. It took tocilizumab almost 4 months to work for me but boy does it work, I did a Pilates class (outdoors) and 23000 steps yesterday ! Hope it works for you- I remember how despairing I was 4 years ago so I do know how you are feeling

[Vonnie10 in reply to Silverpixie]

This is amazing I just hope it's my life changer I'm so happy for you. Xx

[kayd]

Hi I’ve not had any side effects from it so hopefully just coincidence.

[claireyj]

Hi I think this biologic is amazing and I really think it’s a coincidence with a bug or something , fingers crossed anyway as I really hope you feel the benefits to your joints . Xx

[Florida100]

I have just taken my 4th injection and so far I can see a good improvement with my pain. I haven’t had many side effects so far apart from tiredness the day after I inject. I’m sorry to hear about your stomach problem and really hope it isn’t connected with the medication. If it continues, definitely speak to your rheumatologist nurse and hopefully they will be able to advise.

[Mmrr]

I had to stop tocilizumab after a couple of months due side effects. I had mild abdominal pain most days, felt yeuch all the time and had several bouts of oral thrush and black tongue. The fatigue lasted something approaching 2 days after injecting.

Not the med for me. Once I stopped taking it I began to feel 'better' within the week with all side effects diminishing as time went on.

[Vonnie10]

Update I've had to run the loo sorry to much info as soon a I woke up and couple of times I inject again friday I will give it another week on friday and take it from there... its known for diverticulitis..and I dont want that..added in the Joy's of RA I just think there to powerful for me seem very senesthve to all.these drugs..nightmare..but I.. glad your all doing great.. keep laughing and smiling people