Forum

views on tysabri v gilenya

Hi

I am after viewpoints on Tysabri and Gilenya.my neuro has offered me 3 options as my MS is agressive.I have RRMS

I am aware of the pml risk with tysabri and with gilenya the serious side effect is heart failure.I am currently coming out of yet another relapse and just stopped a 3wk course of steroids. the third option my neuro suggested was to keep on betaferon and supplement it twice a year with oral steroids- i don't like this option.

I can't have an MRI for 2months now. I just want my quality of life back! I am coming to the conclusion tysabri is the way to go

is it correct tysabri can reduce relapsse by 70% i am not sure on reduction of relapses on gilenya.  betaferon- i think only reduces relapses by 30%? mind u betaferon hasn't worked for me

Thanks

Middx2sx

Hi Middx2sx,

I'm afraid I can't give you any advice on either drug even though I to have RRMS I've never been on one of them.

I'm sure someone else will be able to advise you though.

Take care and good luck.

Janet

Hi, I look forward to reading your replies. But as my MS/? is more like

the PPMS variety, those drugs wouldn`t be given to me.

luv Pollx

Hi,I have been taking Gilenya for 7 months and also was on the trial for 2 years-and during the trial was I on the drug and not the placebo.I have to disagree with you;Gilenya does not cause heart failure.It can cause a slowing of the heart rate after the first dose of the drug,which is transitory.

I was told that if the Gilenya wasn't effective,I could have Tysabri.For me,the idea of taking Tysabri stresses me more than taking Gilenya.Sorry,but I don't know by how much Gilenya reduces relapse rates.

I would prefer to carry on with Gilenya,to be honest.Side effects that I have are low white cell count.I have regular blood tests for this.I usually never get colds but have had two so far this year.I also have a very dry skin with red patches on my legs.

If I were you I would ask my neuro what he thought the best choice for you is.

Hope this helps.If you have any questions on Gilenya,please don't hesitate to ask.

Brenda x

Brenda thank you so much for you reply. i really don't know much about gilenya. i asked my ms nurse for a good website with more info on gilenya but she told me just to search on the internet or try the ms society. my ms nurse is new and new to ms- she's learning!

I am seeing my neuro again on 1st May and will ask his opinion.  I am totally confused which to take.  I have spoken to two ladies who take the tysabri infusion.they have taken it for 3years now. one hasn't had any relapses or if they did they didn't notice.The other lady is in a relapse but hadn't had one for 3years. I have no one to ask how taking gilenya is going- so am glad you responded!!!happy2

my neuro told me to look at www.msdecisions.org.uk- that lists tysabri but no info on gilenya. i know i can google gilenya or fingolimod but there is so much info/sites out there!

i remember my neuro said i would be closely monitored at the start by having an ECG over 6hours or so.he was the one who mentioned the risk of heart problems/ heart problems.

how often do you have ECG's?

There is a long list of side effects for gilenya- but i am not keen on eye pain/vision probs as a side effect. currently getting over ON. I hate eye probs with a vengence.

are you more prone to infections on gilenya?

how quick did gilenya get into your system? if i start on it June/july would it be in my system in time to catch when i usually relapse end of Aug/Sept? ( i think i will add this to th long list of questions to ask me neuro)

confused

the msrc website lists another oral pill going thru the final stages phase 111 but i am not sure how far this is?

Brenda i don't understand what the difference between a placebo and trial is??confused

 

Gilenya is about 50 - 60% effective in reducing relapses and reduces progression by about 30% when compared to placebo.

It has also been shown to be 50% more effective than avonex

Thank you all for your replies.Thanks CharlieC and Bateman for explaining placebo and Gilenya percentagesthumbsup

Hi Middx2sx

I can't give you any advice about Gilenya just about Tysabri I know the very small risk of PML puts some people off it never did me suppose my MS was that bad it was a simple choice for me I was even on Avonex but I was relapsing every 4 or 5 weeks that went on for 18 months and with every relapse I just kept getting worse.

It got that bad I just felt I couldn't go on I cried myself to sleep every night and I hoped and prayed I wouldn't wake in the morning I had to be washed and dressed at my worset I was in a wheelchair with only the use of my left arm my speech and swollow where very bad and the fatigue was a nightmare.

My mother took me to my neuro appointment I'd herd about Tysabri and was asking my neuro could I try it he was telling me about the risks off PML but I told I didn't care I'd no life and even if the risk of getting PML was 1 in 10 I'd still have gone for it I wasn't expecting cured or anything I was hoping for some ease in my relapse evening just so I could stay at home for a month or 2 instead of a couple of weeks before I was back in hospital with a relapse.

I started Tysabri in August 2008 a couple of days after my electric wheelchair was delivered but thank God I never needed it after 3 infusions of Tysabri I could walk with a crutch and after my 7th I was walking unaided I haven't had a relapse since I started Tysabri I'll be going on Thursday for my 46th infusion how much my life has improved since I started Tysabri I even go to the gym a few times a week now I feel stronger, healthier and fitter than I ever was I've no fatigue or don't get tired now at all.

It may or may not work like that for everyone not in my wildest dreams did I ever expect it to.

I just think if your MS feels bad enough you'd try anything I know I would.

Mark

Hi Middx2sx, 

I have just been in the same situation as you and Shell and have decided to start Tysabri. I even shocked myself with this decision because I had many months of angst hoping and praying that Fingolimod would be granted a licence and now it has I've done a complete turnaround and opted for Tysabri instead. The reason for this is the increasing evidence coming to light about heart problems and even fatalities associated with Gilenya, and as heart problems are very prevelant in my family I am erring on the side of caution because even though the risk is small I would rather not have to worry about it.  Having said that I have tested positive for the JC Virus but I consider the risk of contracting PML even smaller and I am reassured that I will be monitored even more closely in the light of it. Obviously I would rather have tested negative but I believe that the risk of me contracting PML after 2 years of Tysabri is 1 in 2500 but if antibodies were present the risk increases to 1 in 800, fortunately they weren't so I have made an informed decision to go ahead. I have an appointment with my Neurologist and MS nurse this Wednesday to sign the consent form and then I hope to get started on Tysabri next month. I'm not banking on a miracle happening, just halting the relapses and the damage they leave behind and slowing the progression of this disgusting disease will be good enough for me. Good luck with your own decision.  thumbsup xxx

If your neurologist has not yet given you a clear steer on what he/she thinks is best for you, then please insist.

 When Avonex stopped working for me, I was offered either Tysabri or Copaxone, but the neurologist strongly recommended Ty on the basis of how my MS was behaving.  The choice was still mine, but I was in no doubt about what he thought I needed. 

There's a difference between patient choice (good) and the clinicians leaving us to flounder without proper guidance from them (bad.)

Alison

x

 

Thank you so much for the recent replies.  I am going to insist my neuro gives me his opinion/direction when i see him next tues 1st May.

tysabri- a nurse told me most people have the jc virus and that it lies dormant

Shell- hope you have a speedy recovery from ON. I am coming thru my bout of ON- its one of the worst symptoms for me in a relapse.

I saw the post on here about the MSRC gilenya diaries-which will be useful to read.

I think i will go with Tysabri but will have a list of question for my neuro nxt tues.I will be going to my app with my dh and take lots of info with me!!! at the end of the day if tysabri doesn't work there is always gilenya to fall back on

Shell-hope gilenya works out for you

Susie- good luck with tysabri

Hera xx

Hi again,sorry I didn't get back to you sooner.I've been working the last two days and didn't have the energy to sit down and concentrate on a reply.

Try this link for info on Gilenya:

www.gilenya.com

It hope it's of some use to you.I had a quick look,it looks quite accessible.

I don't know how long iGilenya takes to start working.You'll have to ask your neuro.

There is an increased risk of infections and there is a risk of visual problems-called macular oedema.The symptoms are similar to ON.(I'm copying this from a leaflet on Gilenya that I have).

Please let us know what you decide.Take care,Brenda.

 

Thanks Brenda for the gilenya website happy2

Rgds Hera x

Thanks Brenda for the gilenya website happy2

Rgds Hera x