Tocilizumab

[MavisEllen]

I am seeing a new rheumatologist following an urgent referral from the hospital tomorrow, Thursday 16th, afternoon. It has been suggested by the hospital registrar, he rang before 9.00am on Monday to see how I was after my emergency visit last Thursday and increased to 60mgs from 5mgs dose of pred., anyway he says the rheumatologist will probably want to start me on Tocilizumab. What are peoples experiences as I declined Methotrexate due to already having a tendency to bleed easily. I can't tolerate even aspirin without bleeding. I also have long term gastro-intestinal problems as a result of a burst appendix and peritonitis many years ago but they also found interssusception of my bowel and now it appears that I have adhesions following the corrective surgery and chronic constipation has plagued me ever since. I'd be grateful for advice and to hear other peoples' experiences as I want to make an informed decision.

[PMRpro Ambassador]

I think I would want the close involvement of a gut specialist in the discussion - the manufacturers caution against its use in gut conditions where there is ulceration and an increased rate of perforation was found during the clinical trials.

This work

ncbi.nlm.nih.gov/pmc/articl...

says it shouldn't be discounted entirely in gut problems but care is probably warranted.

Do you have a current GI specialist?

[MavisEllen in reply to PMRpro]

Thank you for your prompt reply I found it helpful. I don't have a GI specialist my associated symptoms have been well managed by my GP.

[Rugger]

I have been on TCZ for 17 months with no problems other than a low white cell count once, which responded to missing a couple of doses. However, I have none of your existing bowel problems or history. I would want to discuss this fully with the Rheumatologist and a Gastroenterologist or surgeon.

Best wishes.

[LemonZest11]

I too have been on TCZ for around 17 months with no real issues. Main side effect for me was neutropenia, but that was alleviated by pushing the doses from weekly to fortnightly, and then three weekly. I recently had a mini-flare which was quickly brought under control by increasing pred from .5mg to 4mgs for a week and then 3mgs for a week. TCZ has allowed me to reduce pred down to a very safe level. I wish you all the best on your journey.

[USAGCA]

ME, constipation is not a good thing while on Tocilizumab. See a gastroenterologist before starting TCZ.

[christine2715]

Hello, i have been taking TZ by injection, easy to inject myself, for 3 years. First weekly tgen gradually to 4 weekly. It was marvellous how it allowed me to get down to 2mg Pred after trying every kind of steroid sparer without success. Lately, i have had difficulty getting the injectons due to poor supply from Lloyds clinical who are useless. This resulted in one injection being two weeks late causing a bad flare which has taken months get back on course and now taking TZ every 3 weeks. Without this drug i had 2 years of feeling really ill on and off. I have had no side effects.

[SheffieldJane]

I have had PMR then GCA/LVV treated by Prednisalone. I have had the latter for about a year and am being treated with self administered ,subcutaneous,injections of Tocilizumab . I was able to reduce my Prednisalone quite rapidly from 40 mgs to 10 mgs. I have had no major side effects from Tocilizumab. I had however developed Cataracts, raised blood pressure, high blood sugar, weight gain with Cushings features with Prednisalone, over 5+ years, therefore it was advisable to get off it if I could. I am currently on 8 mgs of Pred and weekly injections of Tocilizumab. I do have gastric symptoms, indigestion, GERD, oesophageal spasms, diahorrea and sometimes a very sluggish system. This pre-dates the Tocilizumab but I am aware that it might make it worse.