Last reply 3 years ago
Goodmorning All :)

Hi everyone.
I’ve thouroughly enjoyed reading your posts. But first and foremost I’m not on gilenya, I’m on extavia (beta-interferon 1-b) but when I punch it in on the interweb it comes back mostly as gilenya? Is there a similarity? I inject every 2nd day. I actually started on it last April but post bloods 3 months after my lft glut trans was at 720, I believe it’s meant to be between 10-55 (approx), they asked if I was drinking excessively!!!! Hadn’t touched alcholol in 2+ yrs. Then out of the blue my gallbladder ruptured and was rushed in for open surgery. Now the general surgeon blames the interferon for the raised glut trans but the neurologist blamed it on gallbladder disease. So as it goes I’m now back on it and just my 2nd injection been done. Dying to know if it was the interferon that was attacking my liver as my gallbladder can’t be blamed now. Regardless, they arnt doing bloods for 12wks and I don’t think they should leave it that long, I thought after 4wks they should just check the lft blood.

Ps, trying to get my photo up so I don’t seem ignorant but it’s not happening, haha. Maybe it’s bcoz I’m working off my mobile phone?
Thanks all.
Lisa, Aberdeen, Scotland, UK.

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Anonymous
3 years ago

Good morning, can’t help with anything, other than to confirm that your not alone in struggling with the profile photo, and I could not still explain it now! Stumblr will email a helpful few tips at some point….


stumbler
3 years ago

@cherish , firstly, Extavia and Gilenya are two different drugs.

With regards to the problems with your liver, I can see why you’re concerned, Your Neuro seems happy to revert back to quarterly bloods, which is fairly standard for the interferon drugs.

But, I’d have a word with your GP, as your Primary Care Provider. I’m sure they’d be happy to arrange a blood test at four weeks.

I’ll send you an e-mail about your photo. 😉


cherish
3 years ago

Thanks Stumbler for both your advice with bloods and help with the pic. Il go give it a go 🙂
Anyway, the time I was on interferon last year and newly now again I’m always asked even by Neuro…. ‘Is it making you feel better?’ and my response is always ‘how would I know or anyone else come to that’. If it’s designed to stop one out of three relapses then how could anyone possibly answer that, not even the patient living with the disease could. I had no side effects apart from the liver situ but I never felt unwell (liver ways)….. But boy this is such a complex disease. Everyday is a different story. I have optic neuritis atm but refuse the 3grm, 3 day doze of methylpredisolone. I hallucinate too badly 🙁
Listen guys, thanks for making me feel welcome on the site.
Hope you all have a nice weekend.
Lisa 🙂 xx


stumbler
3 years ago

@cherish , you’re right, no-one can say whether a treatment works, we just don’t know what we’d be like if we weren’t taking the treatment!

It’s a silly question! 😉


cherish
3 years ago

Thanks to brunnin too.
I used gravater bcoz it appears my mobile phone can’t let me load anything over 98kb. So super thanks for that.
Does anyone use novartis extavia?
Are the names of the meds different here in Scotland UK? But have same ingredients?
I have a neighbour that has ‘AVONEX’, The one that’s just injected weekly. But as I live with ms I chose the last let’s say 8 yrs being ignorant to it (intentionally), as I never wanted a disease to own me, I wanted to own it. But unfortunately it is now winning so I have to stop being ignorant and act my age and not my shoe size 🙁
Also, I start peristeen irrigation on Monday as my bowel now neurogenic and wondered if anyone else has used ‘the tube and tub’ approach? Just a humorous name to call it I guess as laughter is best bcoz tears don’t solve anything or I’d cry like a baby everyday.
Thanks all for your help this morning 🙂 🙂 Lisa


stumbler
3 years ago

@cherish , you’re right to laugh about these things. Laughter produces good chemicals in the brain!

At one time, MS treatments were referred to as the CRAB drugs (Copaxone, Rebif, Avonex and Betaferon). The latter three are all interferon-based. Betaferon is interferon beta-1b, which is exactly what Extavia has as its key ingredient!

The CRAB drugs were seen as the first line treatments. There are now oral options, Gilenya, Tecfidera and Aubagio. And Tysabri (monthly infusion) and Lemtrada (annual infusion).

The three interferon-based meds have different injection schedules, e.g. Avonex is weekly.

I can’t help you with irrigation. When I went to school, irrigation is what farmers used to use when it didn’t rain! 😉


cherish
3 years ago

Lol at your irrigation Stumbler!
Il probably feel like a farmer going through an old dirt track anyway 🙂
Your knowledge of the meds is superb, it’s me that needs to catch up now.
I have plenty knowledge of the oral drugs I take, gabapentin, baclofen, diazepam, oxycontin, oxynorm etc etc. Chee, my history would put you into a deep sleep for days- but it’s the disease modifying drugs I need to teach myself a little more now. But you didn’t half put it into great context for me (as I’m sometimes thick as mince) but you made that sound so easy!
Anyway, I’m dreading the peristeen really but there’s always something positive to hold on to….. My bowels will (or at least should move everyday) and after 6yrs of only going twice a month that is surely bound to make my body a little happier! I have the machine here all ready to start 7am Monday but boy it’s gonna be strange for a bit 🙁
Thanks Stumbler.


stumbler
3 years ago

Good luck for Monday, @cherish . I’ll try to NOT remember it. 😯


cherish
3 years ago

I may just have to make you remember, haha.
Il write on my calender ‘mail Mr Stumbler at 9am Monday the 11th with a detailed description of my First use’.
🙂 🙂


stumbler
3 years ago

Please spare me the details, @cherish . 😳

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