hi guys just done 15 days on my hep c meds only to have them stoped because of Stephen Johnson syndrome any thoughts I'm pissed off

[ih369]

why have they stopped my hep c meds I'm frustrated what can I do

[navigatinglife]

Hi ih369 sorry to hear this. They had no choice I guess due to the reaction and condition. Have they given you treatment for this yet? Can they give you alternative hep c meds? Surely you cannot be left untreated for both? Crikey, you need answers so you'll have to push & pester your hepc nurse. I would phone everyday until you know what they're going to do. Hopefully once this syndrome is treated you can get different medication for the hep c. wish I had a more definitive answer and or a magic wand, hope this gets under control quickly 😍😍

[ih369 in reply to navigatinglife]

thanks navigating life my syndrome is In rendition I start another course of treatments in 5 weeks and my hep c nurse is ace she's the best but thanks for your concerns like I say very frustrated

[navigatinglife in reply to ih369]

Glad to hear that! Of course soooo frustrating, best try and distract yourself for the next 5 weeks which is hard. Luckily i have open fires & chop wood when things are tough. let's hope it flies by 😂 😍😍

[ih369]

I'm in recovery at moment have been for the last 6 months they keep me very buissy ain't got time to faulter 100 miles an hour all day every day lo

[Hidden]

oh dear, how bloody awful that must be, I truly feel for you. May I ask, what is this syndrome? I've never heard of it.

[ih369]

Heather had I hep c meds lower your immune system this syndrome lowers it even more which left me open to severe infection which manifested itself in the form of a major skin and blood infection

[Mizzkent]

Oh sorry to hear you’ve had such a ruff time of it do you know what your next treatment will be? Great that your keeping yourself busy👌I wish you all the very best of luck going forward 🤞 xx

[ih369]

I need to speak to my nurse on Monday see what's on offer lol