Tocilizumab

[Vonnie10]

Hi hope you lovely people are doing well on this gloomy friday....I put a post up last week cant find it ...it was about this drug tocz mostly everyone had great things to say. Me been me I've had diaharreah couple of times bad irritation and pains.. I thought it may settle..woke up today same again but more the stomache irritation and pain. Today I'm.due to .inject was backwards and forwards should I give it one more week.. then I sat and thought nope my nurse said about coffee ground vomiting or diverticulitis to stop... not that I have any of these symptoms but it seems it just may be heading down that road. This drug was my last drug on the list I know you can have it ivi but would.it not cause the same issue? ..as anyone else had problems with nasty side effects of all.the RA drugs and if so how did you go on about getting you RA under control?

Sorry my post is gloomy and not nice.

Wishing you all pain free days

Keep smiling and laughing.

Yvonne

[helixhelix]

Here is your post. If you click on your name you will get previous posts

healthunlocked.com/nras/pos...

[allanah]

Helix has sent you a link but I get iv TCZ every month and i must say i havent had side effects. But if it is not for you turn it's not for you. Talk to the docs xx

[Vonnie10 in reply to allanah]

Hi al wouldn't ivi act the same tho with my stomache I do not want to end up with a bleed or anything else not nice is it... if a injection is doing this would.it not be just the same with iv ? It's just a nuisance nothing is doing what it should ..feel. like one of the nuisance patients...and al I was a auxiliary for years and the them patient always in handover were known as off there heads or nutters....no word of a lie especially a certain doctors patients...unforgivable really no understanding.now I know what's they go through ...and I may say I was never one to label any patient I was always lovely kind and very patient were as I would.be told.off for been to.fussy to all of them no matter why they ended up there we were heam and rhematoid I worked gastro was a lot of detox from drink...and we know how hard these are to look after I would never judge anyone ever... I just hope I'm.not labelled that patient and eye rolling and so on...

My clinic seems nice enough the girls are lovely.. but I do worry about what's gets said in meetings.. with all my side effects .

[allanah in reply to Vonnie10]

Well dont worry!!you ate just telling them what's wrong with you.it might not be right for you and I know many people that try drugs but its combinations of things that work!!all you can do really is tell them how you feel and yes tell them you're worried they might think they wont believe you ! I'm sure they do though xxxyoure having a rough time of it and after your recent bereavement no wonder your system is playing up. Stress always affects me physically x sending love x

[Vonnie10 in reply to allanah]

Al I do not care if they do or don’t believe me why wouldn’t they believe me it’s all true the team at my clinic are nice that’s there speciality couple of nurses who aren’t very patient I’m nit bothered theyll probably referee me back to the consultant .. my stomache still not a loo percent but it’s getting better.... it was a million percent the drug causing it .. al have a good day keep smiling 💋

[allanah in reply to Vonnie10]

That's good . Xx

[Knit12]

I’m on it but it’s not working for me. I’m on week 7 and so far am having a day in bed after taking it. Very tired, upset tummy, very stiff joints and in so much

Pain with my R.A. Like you I’m at my wits end as I think there is t much more to try. Everything has either not worked or given me horrendous side effects. I sympathise

[Vonnie10 in reply to Knit12]

Hi I'm.so sorry but relived but sad your going through the same.thing s me. I cant say even if it helped my joints as I had steroid injections 3.maybe 4weeks go I even have terrible induced anxiety form them.. I've never suffered anxiety its horrendous but that settling down had to beg gp for help and that's just wrong on a another level. 4times I rang I sounded like a nutter beta blockers did nothing but stopped.my bp rising then diazepam still not great loraxpam worked a treat but I think the steroid was taiiling off......but this tocilizumab took it last Friday was wiped out Saturday had diaharreah neededthe toliet as soon s I woke up urgently afew times and then started getting like a dull. Irratated pain.. .was thinking should.i give it one more go but why would I just to.have another week of the same.thing ...dont know how you've managed 7 weeks .. be careful....she warned me about side effect coffee ground vomiting divticulititis and so on ....I'm.sorry but my irratation nd pain in my tummy was telling me this is.not right for you ..so.ive stopped it dont fancy ending up.in A&E with my a bleed or a perforated bowel..so do not know what's next my stomache still.iffy taking dihroxodiene for it....I'm.so sorry you as unlucky as me K take care . Xxx

[tamnwill]

My understanding is There are two more biological drugs on the list after Toci. They’re called Baricitinib & Rituximabe. Have you tried either of these? Email your rheumy consultant i would.

[Vonnie10 in reply to tamnwill]

Yes I’ve had ritx had it last year 2019 then agin in jan 2020 did nit work as well and there very reluctant to give it with the covid unless your severe lupus I had Jak inhibitor baricuitnib isn’t that a jak inhibitors drug can’t remeber what harmed with that now,, been so many

[Mmrr]

I didn't do well on tocilizumab, mainly mouth and gut problems. Thrush, black tongue, bleeding mouth and gut pain. I gave up after 8 weeks.

Toficinitib is much better for me side effect wise, but I'm not sure how much it is helping.

[Vonnie10 in reply to Mmrr]

M how did you go 8 weeks with them symptoms god knows what there doing to us ,, I gave up week one my stomachs pain and gut was telling me no straight away anyway I’ve left a message see what they say...

[Mmrr in reply to Vonnie10]

I hope you find something soon that works for you.

[Vonnie10 in reply to Mmrr]

M I wish I could stay on steroids for ever I feel great well aside from the anxiety which as settled down with me begging the gp for some lorazepam but there obsessed. With addiction and people. becoming dependent on them... which seems unfair.... it’s should be down to my rhem team to sort steroid induced anxiety....I wished I never had Ra in the first place but we all know steroid are really bad .. I can’t have them side effect I don’t know how you went 8 weeks in that state 1 week was enough .... I just dunno what’s next.