@pebbles19

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pebbles19

Tysabri or Gilenya??

Hi!! I was told last week at my annual appointment that after a year and a half on Avonex, that it is not working and I have to move to stage two treatment. The two options I have been given are Tysabri and Gilenya and there seems to be so many side effects to both of these that I am overwhelmed by the news!! Does anyone have any advice as to help with my decision??

Stumbler

@Stumbler

Unfortunately, anything we take these days may cause side-effects. From what I've seen both Tysabri and Gilenya seem to both be effective. So it could be a case of do you fancy a monthly infusion or a daily pill. You'd be monitored on both medications to mitigate any serious side-effects. I'm sure others will be along to comment soon, who have personal experience of both medications.

CaptainKristoff

@CaptainKristoff

I'm on Tysabri and have been for 22 months. So far I've had no relapses (touch wood) and am doing really well on it. The infusion takes 1 hour then, depending where you go for treatment, they may like you to wait behind for an hour. It's done every 28 days and doesn't require you to do anything else in between. All people I've spoken to whilst having my infusions all say how much better they're doing and how they wouldn't want to be without it. Do you know your JC virus status? As I understand it, the JC virus is only an issue for people on Tysabri. I was negative, but at some point in the last 6 months (the time since I was last tested for it) I've become positive. This means that there's now a risk involved with my treatment but most people on Ty are positive as around 65% of the population are positive. It's definitely something to factor in to your treatment choice.

Malvina

@Malvina

Pebbles19,I know exactly what you are talking about. I've been on Avonex for 8 years, 4 years completely relapse free and then all just came crashing down. Was given the same options by my neuro. Done tons of research, found and became friends with a person who's been on Tysabri for the last 9 years. Found people with a lot of experience that I was looking for (and willing to share;) in MS group on this website http://www.dailystrength.org/ Got accointed with a fantastic nutritionist, learned a lot about possible causes of autoimune conditions. Changed my lifestyle completely (started loving new very healthy and green things;)things As a result of all the above I stayed off any meds for a year and a half relapse free just by maintaining a very very healthy lifestyle . Then had a relapse that left me being very close to being completely blind for couple of month. Became absolutely terrified of what future might hold. Went back on med way. Tried copaxone for 2 weeks felt awful as it just didn't agree with me at all. 8 month ago went back on Avonex and it seems to be doing the trick so far. Doc says that it's very possible that when it stopped working it could've happen because my body was producing enough of antibodies. And now it's just no longer doing it. Should that become problematic again my next drug of choice is BG12 which al has already been approved by FDA and eagerly awaited by NHS here. My neuro believes greatly that it's ultimately next best thing as it has no side effects and it's a pill made out of a very well known plant that's been around for ages and previously been used to treat psoriasis in babies.It should be out in UK by Jan the latest. Anyway hope you'll make a good decision (just remember that you are the only person who can make it ;). And as I mentioned I can relate to the hell of a confusion that you are going through now so if you'd like to have a chat about it just give me a call my number is +44 (0)7799650770 or skype me on elenaw14 Good luck and let's keep in touch. Stay Safe and Sane! ;0) Malvina

pebbles19

@pebbles19

Thanks so much for the responses!! I had a blood test done last Thursday to determine whether or not i am JC positive or not...so kind of waiting to hear about that to make my final decision. I had planned on moving to Canada in the next year or so and being on the Avonex suited that perfectly......first thing i thought of when i was told i would have to change medication was "would i be able to still go travelling". If I choose Tysarbi this may not be an option :( guess its just something that will need to go on the back burner for awhile until i see how the treatment goes!! Thanks for the advice everyone :)

Cariad

@Cariad

Hi, well I've done both. Moved from rebif to tysabri as my MS is very aggressive and the rebif wan't doing anything. The official stats are that it reduces relapses by 80% (I think, it's something like that though) but in reality, my neuro said it's almost 100 reduction in many people and he expected to pretty much see the end of my relapses. I had to come off it after a few months as I had two reactions to it and was continuing to relapse. Started gilenya (fingolimod) in September last year - the stats are about 50% reduction in relapses so less than tysabri but for me, there wasn't an choice anyway. Side effects wise, it's less risky. My neuro said some wise words though, yes you have stats but at the end of the day, it's about finding the right drug for YOU, for YOUR body etc. For some people, rebif, avonex etc (30% reduction) might be their prefect drug even though stats wise, it's the least effective. For others, even the best drugs stats wise might not be the one for you. All in all, both treatments were fine to take for me-no side effects from either until the reactions to the tysabri. Also, for UK MS-ers, there's are 2 closed groups - one for tysabri and one for gilenya for people to share experiences etc and for those who are considering the treatment: Fingolimod (gilenya) : https://www.facebook.com/#!/groups/220969861369180/ Tysabri: https://www.facebook.com/#!/groups/112262645518729/ Hope this helps:)x

pebbles19

@pebbles19

Thanks Cariad, I will take a look at both sites you have mentioned... I'm living in Ireland so would be great to hear from any Irish users out there who are currently on either med?!?! Again thanks to everyone for the advice....so many questions for my MS nurse tomoro!!

MustStopMS

@MustStopMS

I have been on Gilenya for 6 months now with no side effects whatsoever. My heart rate and BP were not affected one bit during the first dose observation. Also, i have not been getting sick any more than usual due to lower white blood cell count. In fact, the one head cold i did get was gone in no time! Cariad is correct that studies showed Gilenya at approx. 50-55% relapse reduction. Tysabri was 75-80%. With Tysabri the PML risk is there if you test JC positive. Before I always heard bad things about Tysabri, but recently I've been hearing that its becoming more and more popular due to the effectiveness. If you have any questions regarding Gilenya, feel free to ask!

ChrisinFtWorth

@ChrisinFtWorth

My Tysabri story. I'm 45. Diagnosed 9 years ago. I had 3 exacerbations in the first year after diagnosis. I went from being fine, to a walker, to a wheelchair in about 8 months. Avonex and Rebif were doing nothing at all. I was freaking out. Tysabri had been brought back to the market after being taken off due to a few deaths from PML. My neurologist sat down with me and we did a risk/reward analysis. For me, it was a no-brainer. I also had a talk with a friend of the family that had been dealing with MS for 20+ years. She told me that if she had to do it over again, she would do everything in ability to keep her strength as long as she could. I started Tysabri, stopped smoking, joined a gym and lost about 40 pounds. After 8 months or so, I graduated from my wheelchair to a cane. About 6 months later, I started losing my canes. I would walk into a gas station (because I could drive again THANK GOD), lean my cane against the counter to get out my wallet, and then walk back to my car without realizing I forgot the cane. I have had ZERO relapses since my first treatment and have been cane free for a long time. Tysabri has TOTALLY worked for me. Every time I have to take my JC test, I am very much on edge until the test comes back negative. I'm not sure I could handle being taken off of Tysabri. My neurologist has me sit down and talk to people who are considering Tysabri. Some people are really freaked out by the risks, some aren't. It a very personal decision. Like other people have offered, if you have any questions, PM me.

US-Emma

@US-Emma

I have been on all 3. Now I am on Lemtrada- a series of 5 daily infusions over 5 days, then no treatment for a year. At the one year mark you receive 3 days of treatment. The results with Lemtrada have been better for me than any other therapy but there are risks to consider, not many side effect, but risks. If you are considering having children Lemtrada is a better choice than either of the other two- for more on that see: http://multiple-sclerosis-research.blogspot.com/2014/08/clinicspeak-natalizumab-or-alemtuzumab.html http://multiple-sclerosis-research.blogspot.com/2014/08/switching-therapies-considerations.html This UK blog is great for medical information about MS. It is available in the UK and Canada. I live in the US and had to travel for Germany for it. The story of the decision, trip and results are on a blog- lemtrada.blogspot.com You can email me though there is you have specific questions. I wish you well in your decision and upcoming move. My husband is Canadian- they are a nice lot! :) Take care, Emma

US-Emma

@US-Emma

I agree with Carlad completely when he said " it’s about finding the right drug for YOU, for YOUR body etc." I take risks that some people may not be comfortable with because I want to be aggressive in the treatment of my MS. My husband is on this page as well. But I should have said that up front. The risks I am willing to chance may be unsettling for others. My goal is to live my life without a wheelchair and travel as much as possible. 11 years after diagnosis I am fully ambulatory but had started to travel less until I took Lemtrada. Now I am doing more. You can definitely travel on Tysabri. The medicine takes 2 hours to infuse every 28 days. I was on Ty for 6+ years and still managed to travel 5-6 weeks a year. Take care, Emma

Isa93

@Isa93

I´m on Gilenya since one Year and I´m very happy with it. I have no side effects, the only thing is, that I´m a little more tired, but that is all. I can not take Tysabri because I have one Factor in my blood which doesn´t alowed me to take Tysabri. If I do, I will get a lot of permanent Damages. So it never was an alternative for me. I only can say that Gilenya is very good and I won´t change the Medication in the next Years. I hope you do the right decision! Good Luck! Isa