Tocilizumab and runny tum…….

[Amnesiac3637]

Dear All

I know you’ll come to the rescue with good advice and experience. I’ve been on Tocilizumab sub.cut injections for 10 weeks. Very slow progress in terms of improvement in joints or general yuk but have slightly more energy………..sort of hooray.

Bowels (sorry, crap subject, so to speak 🥴) have been affected and much looser since being on Toc. Also have slight niggling pains in stomach (not gut) but not constantly. I have looked up the side effects and diarrhoea is one of them -and may of course need investigating- but just wondered if any one on Toc has had anything like this and did it resolve itself or did you need to abandon ship?

I’ve had so many drugs in 33 years of RA but usually been fine in terms of side effects -though over the years all the others have poisoned me eventually or lost their efficacy! Can’t seem to win but battle on. Thanks for forthcoming advice. X

[weymouth321]

Have been on Tocilizumab hospital infusions for 2 years now and no problems with diarrhoea - except low white cell count sometimes

[Amnesiac3637 in reply to weymouth321]

Thanks and glad it’s worked for you. If you can remember, and I know we all react differently but how long did it take to start to make a difference ?

[weymouth321 in reply to Amnesiac3637]

I’ve just logged on since messaging you several days ago - um , as far as I remember it didn’t take too long to work - say a couple of weeks . But yes , I like Tocilizumab infusions and only take one hour at the hospital .

[Swimming20]

l got great result more or less straight away been on it 18 month now ..l also have low white blood cells sometimes..good luck

[Amnesiac3637 in reply to Swimming20]

Glad to hear that and hope it continues for you.

[Trezona]

hi, sorry to hear that, no issues for me, took a while to start working probably properly 3-4 months (I receive 4 weekly infusions in hospital).

[Amnesiac3637 in reply to Trezona]

I think it may be slowly starting to work but it’s taking much longer than past biologics - am impatient to be repaired as soon as possible!

[Maggsie]

I've been on Toc for quite while now and have had tummy troubles on and off. I've found that some foods affect me much more since starting toc. Dairy, sourdough bread, pulses and chewy type sweets (pastilles, fruit gums, opal fruits etc.) . A few switches have made a big difference.

[Amnesiac3637 in reply to Maggsie]

Thanks for replying. It sometimes just does take tweaks -I eat masses of fruit because I love it but may have overdone it!

[Lynnels]

Hi! I’ve been on Toci for about 8 years now but I go to hospital every month and have it IVI. It has been my lifeline. I do suffer with IBS anyway but having it IVI I have not noticed any difference. The drug itself is amazing so maybe speak to your rheumatoid about getting it (RA) under control this way and then returning to SC

Good luck

[Amnesiac3637 in reply to Lynnels]

Thank you. Have managed to get appointment on 4th October with rheumatology team so will see what they think about this and all the other bits of me that are falling off and seizing up!

[Vonnie10]

imI'm on toc took s while for it too worwork its been a huge godsend to me 3 years in now on it fi gers crosssd itsit's kept me sane my bowebowel habit did change like you maybe a bit of divticulitis iveI've put it dowdown too.

[Amnesiac3637 in reply to Vonnie10]

Thanks for your reply and so glad it’s worked for you. I live in hope it’ll do the same for me in time!