Tocilizimubab and Diverticulitis

[claireyj]

Hello everybody I’ve not posted in a while I hope everybody is doing well on medications and had a good summer .

I’m looking for advice , I’ve been on the biologic Tocilizimubab for 18 months it’s been amazing for my RA but I’m concerned it’s triggered quite a few food intolerances ! Trying to pin point and keeping food diary etc .. I’m also concerned as having bowel issues , low back pain and stomach pain . I’m thinking this could be diverticulitis ( well hoping that’s all it is ) I’m waiting for blood results and a colonoscopy end of October . Has anybody else suffered the above grateful for any personal stories or advice .

Thankyou Claire

[oldtimer2]

Diverticula, those little blow-out pouches that develop on the sides of the gut are very common as you get older. Eating a high fibre diet is supposed to protect, but I've still got them.

Mine rarely cause any problem unless I eat unusual foods. Then I eat even more fermented foods until it settles down. If you're getting a lot of pain, that does suggest that they may be getting inflammed.

There still seems to be tendency for antibiotics to be prescribed in that case, but I do wonder if that's a good idea...but if an abscess forms there seems little other choice. Until someone's had a look at your gut it's difficult to know what to do, but it might be worth having a look at the advice on foodstuffs on Zoe as most of their advice makes sense and is well researched.

[claireyj in reply to oldtimer2]

Thank you

[Amnesiac3637]

Hi claireyj. I was briefly on Tocilizumab (about ten months) recently and it didn’t do much for my bowel either. Haven’t got diverticulitis but did have intermittent diarrhoea almost from the day I started it until it was stopped as being less than effective. The gastro-enterologist said it was almost certainly the Toc that was causing the problem and since I’ve been off it it has settled down.

That’s only one person’s experience though and please don’t take any notice of it in as far as it sounds vaguely similar. You definitely need a colonoscopy to rule out any nasties (very unlikely) so your mind is at rest and you can be treated. I wouldn’t wait till the end of October if you’re concerned though - get in touch with your GP if it all gets worse. Stomach pains etc make life hell. 😩

Best if luck and hope you get sorted out really fast.

[claireyj in reply to Amnesiac3637]

Thank you. I wish I could get an earlier appointment for the colonoscopy but where I live there is always a waiting list. I have phoned rheumatology this morning and asked them to call me regarding the biologic and also to find out my blood results as last time I had a low white blood cell count, which concerns me too. Hopefully things will get sorted soon and more will become clearer.

[Jackie1947]

I have DD and it showed in a CT scan. I also have RA. I'm having a colonoscopy on Tuesday because my gastrologist wants a biopsy to see if I have microscopic colitis as RA and others can cause this . Have a blood and bowel test which is simple.

[claireyj in reply to Jackie1947]

Thank you , I have a colonoscopy booked and waiting for blood results so hopefully will be clearer then .

[AngelWings]

Hi claireyj. I was on Tocillzumab for about a year or so, but was taken off it after having a colonoscopy because of bad stomach pains etc. it gave me inflamed diverticulitis and raised liver issues. I’m still awaiting a scan to see if I have any liver damage. I eat a lot of high fibre foods, fruit and vegetables. I hope you get your issues sorted. See the GP if you’re worried. Hope all goes well for you.

[claireyj in reply to AngelWings]

Thank you , I would love to eat high fibre foods fruit and veg but when I do I’m in pain especially brown bread. . This really frustrates me as I’ve always eaten healthy .. I am sorry you had similar problems with Toci as it’s so good for RA . Vicious circle sometimes isn’t it 🤦‍♀️

[Deeb1764 in reply to claireyj]

That made me smile I always try to get my hubby to eat high fibre but if he does kick back from diverticulitis is too awful. So he eats the bad stuff as such and has fewer flares!!

[claireyj in reply to Deeb1764]

This is why I’m sure I’ve got diverticulitis because I get cramping etc after the good stuff ! One morning I had shreddies oh wow I was in agony that afternoon .. so sticking to cornflakes white bread and pasta , rice etc until I get a diagnosis .

[strongmouse]

My husband has four weekly infusions of tocilizumab and takes a daily prebiotic which seems to help him.

I don't have RA but do have allergies and food intolerance. Keeping a food diary helps, as does cutting out foods you think may be causing problems for several days, preferably a week.

Hope you work out what is happening and how to manage / treat it.

[hatshepsut]

I have diverticulitis, and was put on Tocilizumab.

Don't want to scare you, but that led directly to an abcess on either my kidney or my intestines . The toci masked the symptoms , the access burst, I ended up having emergency surgery, complicated by sepsis, and nearly died.

My surgeons were quite clear that the cause was the tocilizumab. If you read the patient information leaflet, it is contra indicated when you have diverticulitis.

This happened in 2016 , and I am still suffering from aftereffects.

Sorry to be so brutally honest, but after my experience, I would do anything to save someone else from the pain, suffering and debilitation that I have endured since.

Please talk to your doctors urgently and hopefully avoid a similar problem.

Good luck x

[Stills in reply to hatshepsut]

I read your post as searching diverticulitis information. I have bloating, gas, pain low in abdomen both sides, slight nausea, headache, fatigue, bowels normal, vaginal spotting and feel about 6 months pregnant with fat tummy (I’m 61, on HRT, post menopause). Gastroscopy clear, colonoscopy pending and gyne referral done. I will be tested for diverticulitis and ovarian cancer . My chronic rheumatoid condition is dismissed by drs as possible involvement. Based on your experience does this sound like diverticulitis to you.

Usual caveats apply, I’m just interested in your opinion if you wouldn’t mind please.

I wish you good days.

[Stills]

hello, I’ve been reading up on diverticulitis. I have a chronic RA condition of AI origin but am med free except pain relief, codeine based, which I’ve read is a possible cause of diverticulitis.

I became ill in February snd cancer flagged in blood tests. So far gastroscopy was clear, FIT tests clear and cancer flag gone away apparently. U/S scan and trans vaginal probe revealed some calcification and some womb thinning, possibly some diverticulitis. Colonoscopy pending and gyne referral due to vaginal spotting and abdominal pain. I do not have diaharrea or constipation (unless I take codeine) but low abdominal pain, sharp and stabbing just above hip bone on both sides. Based on your experience does this sound like diverticulitis to you?