antonettefick 09/04/18
Last reply 1 week ago
Tuvigin

Morning all.. Is anyone on this site using Tuvigin (clone for Gilenya).

Im waiting for the medz, juat want to know if I should expect any side effect, other than what is mentioned?

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stumbler
2 months ago

@antonettefick , I can’t find anything about this drug.

As far as Gilenya is concerned, its patents don’t seem to expire until 2019.

Do you have any further details that you can share?


antonettefick
2 months ago

That is exactly the reason why I asked here.. Looks like I’m going to be the human guinea pig..

I will let you know when I get mine and then i will try and post the package insert


sciencegeek
2 months ago

Tuvigin and Gilenya are both trademarks owned by the same pharma company, Novartis. Perhaps Tuvigin is their follow-on drug for when the gilenya patemts expire?


revscott
2 months ago

I am supposed to be starting on Tuvigin soon – just waiting formy medical aid to approve cover for it. As my doctor explained it to me it is the exact same drug as Gilenya (clone not a generic). Novartis clone their own drug and give it a different name to make it pointless for other companies to try and make a generic and so protect their product. Either way, I’m keen to start it soon! But haven’t heard of any side effects yet – sorry! But I’ll let you know!


antonettefick
2 months ago

@revscott I was approved for Tuvigin on Monday (yay for me) and thank goodness my medical aid pays it in full.

I am still waiting for my FDO appointment, have you done your FDO?

also hoping there is no serious side effects…

I hope the Tuvigin works better for you… Good luck


freddygiguere
2 months ago

I haven’t used this but I’ve been with avonex needles and the side effects are bad but after a year my doctor moved me to CBD concentrate medical cannibus oil which doesn’t give side effect or get you high and it’s simply oil you swallow takes 2hrs to take effect and last for 8hrs and I’ve seen major improvement with this. I was against cannibus for long time and kept refusing to use it but this was a good step I took been feeling great since I’ve been using it and my legs aren’t hurting as bad as they used to and I can now walk without crutches or a cane.


revscott
2 months ago

@antonettefick, I found this which might be helpful . . . .
https://www.gilenya.com/c/ms-pill/first-day

@freddygiguere, that’s great news!


antonettefick
2 months ago

@revscott I have read that article previously.

@freddygiguere I cannot go the CBD way as I work in the mining environment, and they have a strict zero tolerance policy.. Also it is not yet 100% legal in RSA.

Glad it works though.. I used to be on Avonex, and it SUCKED. Worst flu symptoms after the shot.. I usually took my shot on a Friday afternoon so that I have the whole weekend to recover…


freddygiguere
2 months ago

@antonettefick
Hmmm when I talk to doctor he said it was fine to work with, it’s my legal here yet but medical wise it’s ok if prescribed too and I work in the oilfield and since it’s CBD and not THC they didn’t care since it doesn’t affect you mentally like a street drug and in the oilfield there is a 0 tolerance for drugs and alcohol but my boss has no problem all I need was a letter from the doctor describing what it does and why.

Oh I know I was on avonex needles the suck soooo bad. Which was the reason my doctor looked for a different way to deal with all this.


revscott
2 weeks ago

@antonettefick
I went in for my first dose observation of Tuvigin this week. It was smooth sailing, no drama thankfully. Too early to notice any difference from the Rebif, but so far so good.


antonettefick
2 weeks ago

@revscott I am a month in my Tuvigin and all is well, so far.. Had the bloodtests and all is good there as well… Waiting for my 3 monthly eye test for the macular edema, but i am sure that will be good as well..

I just so stoked that I am off injections…

Good luck


grandma
2 weeks ago

I’m sorry you have had such bad side effects with Avonex, I was on it for 23 years and yes the flu side effects could be bad, but I learnt after a year of going to the docs for a weekly injection , their day and time, so I learnt to inject myself and started doing it at 9 at night, the side effects hit 2 hours later when I was in bed, and mine only lasted overnight, I was a bit slow the next morning, but all was ok by lunchtime, and I felt I could do things which I did for 22 years, it was good until last year when rr became 2nd progressive and I was changed to a Tecfidera. The Avonex gets better with time, it’s a long term deal, so give it time and as long as the side effects are manageable, stick with it if you can. I was told all those years ago that the rr would become 2ndp in 10-15 years, mine took the 23 I was on Avonex, I’m not complaining, so give it a chance!


antonettefick
1 week ago

Hi @grandma

I had to leave Avonex as it did not work for me anymore, I had 12 good months and all of a sudden I had two serious relapses in a period of two months. In South Africa, the patient does not choose the treatment, it is the Neuro’s call. So then I switched to Copaxone, also had a good streak of 18 months and three serious relapse in a period of two months.

Now I’m on Tuvigin and I feel hopeful.. It is a second line medication and I do hope this is the one for me.

I am just grateful that I could move to this drug. The needles were getting on my nerves.. Good luck with your treatment plan, I wish to have streak of 23 years.. I was really down when I relapsed just short of two years. It would have been an awesome goal to reach.

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