Tocilizumab and heartburn : Hello, I wonder if... - NRAS

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Tocilizumab and heartburn

Inanotherlife profile image
4 Replies

Hello,

I wonder if anybody else with experience of this and if so can you remember if it passed?

I’m finally back on Tocilizumab after an ankle replacement, 2 bouts of C-diff, a chest infection and minor surgery for an ingrowing toenail. It’s been a bad 3 months and my RA has been flaring the whole time with little I could take other than paracetamol.

Now 2 injections in, its not yet helping the RA, which I was anticipating, because it took about 4 or 5 weeks when I started it, but I’m having terrible heartburn and I can’t remember if I had it last time and whether it passed.

Would anybody know? I’m being careful with food and drink but it’s keeping me awake at night and I can’t take any antacid or PPI’s because they can cause another recurrence of C diff.

I literally feel like there’s no end to it all, it’s virtually impossible to get on an even keel.

Thanks for listening x

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Inanotherlife
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4 Replies
Amnesiac3637 profile image
Amnesiac3637

I think you should probably contact your rheumatology team or your GP if you’re having really bad heartburn and you can’t relieve it with PPIs or antacids. It may be that it’s not suiting you and you need to come off it and try something else. You’re being careful with what you eat so unless it’s something else you’re developing (unlikely) it does sound like the Tocilizumab is the culprit. Gastric problems are listed as a side effect of Toc and it’s just worth checking that it’s not causing the beginnings of an ulcer.

Are you on any non-steroidal anti-inflammatories as they’re listed as causing heartburn so again worth checking it’s not those causing your indigestion if you are on them. Or any other drugs for that matter with side effects listed as heartburn? Best of luck and hope you get answers which’ll settle your problem.

Lolabridge profile image
Lolabridge

I'm sorry to hear you're suffering with heartburn after your TAR and going back on TOC. I've also just had a TAR and am on TOC too but I'm taking Esomeprazole (PPI), which you have said you can't take. I'm lucky I haven't had a problem with reflux for some time but the PPI will be helping that.

Did you ever have heartburn or reflux problems on TOC before your surgery? If not then it's less likely the TOC is causing the problem. Are you also having to elevate your leg "toes above nose" to help reduce swelling (I do that especially in bed at night) as that could be adding to the problem. If you have been off the TOC for a while it could take a few more doses to get it working well again so you may need to be patient. I'm sorry you've only got paracetamol for pain relief - I had cocodamol which worked well.

I do think you should seek medical advice as Amnesiac suggests, so either contact your GP or Rheumatologist to see what can be done to help you. Hope the TOC gets working properly for you very soon.

Inanotherlife profile image
Inanotherlife

Thank you Amnesiac and Lolabridge.

I just can’t recall if I had the heartburn last time or not.

I see my consultant in a couple of weeks and will mention it to him.

Lolabridge - hope you’re recovering well from the TAR

Intheend profile image
Intheend

I know it’s several months since you posted about your problems with heartburn while on Tocilizumab, but wondered if you needed to come off Tocilizumab as a result, or whether your heartburn settled?

I have been on Tocilizumab since last December and for the past couple of months have been having heartburn and epigastric pain… I am taking Omeprazole and Gaviscon Advance but still suffering!

I know that gastric or bowel peroration are known ( though rare) side effects of Tocilizumab, but really am hoping I won’t need to come off it as it is my fifth biologic and the only one to work so far…

Hope you are feeling better now and doing ok

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