Please excuse the spellings. Saw the neuro letter getting scan 3-4 week with a view to getting one of these. I’m struggling at the minute with back to back relapses with a 10 month old baby and 4 year old and on a mountain of tablets. I have no preference I’m willing to try anything. Just wondering what everyone’s opinion is? Have I taken this into my head are you supposed to have been on injections (started extavia dec) for a year or is it neuro discretion I want to be a mum again Em x
I have been on Tysabri for a couple of years and have had no serious relapses, which has made a very welcome change, as I am sure that you will understand only too well!
Tysabri was the only thing offered (the Avonex, which had worked well for a number of years, had stopped working) and, just as you say, I would have tried anything. I am very glad and grateful to be on Tysabri. It does come with the risk of a rare but extremely serious brain disease called PML, as I am sure that your docs have mentioned. (The stronger the therapeutic effect, the more alarming the potential side effects, seems to be one of those rules of life, alas.) MS was taking such lumps out of me, though, that I didn’t worry too much about that, and still don’t. It is always there in the back of one’s mind, though. But it is a really, really effective drug. This is all stuff you can talk to your neuro and MS nurse about.
Gilenya, I know little of.
Good luck with your decision. I hope that you find something to calm your MS down. The stronger drugs really can do that.
Alison
p.s. I expect you are right about there being some professional discretion when it is clear that someone is not doing well on a first line DMD. It’s not like it’s hard to spot!
I read a few times if you take Tysabri for any length of time then move to Gilenya the PML risk carries over, if you just have Gilenya only then there is little risk of PML.
There is a fingolimod facebook group with lots of people posting how they feel on Gilenya etc.
Seeing as Gilenya is one step down on cutting relapses from Tysabri its down to user choice.
If your not that bad as in RRMS maybe save the bigger guns (Tysabri) for last.
Also with Tysabri its not just PML its a biological drug and you might develop Tysabri antibodies which is what happend to me after
5 months on it and you have to stop though I think thats even rarer than PML
OK what I know and been told by 2 different neuros Tysabri 80% effective while Gilenya is 60% effective.
Tysabri is meant to be the best on the market for MS at the moment.
However both drugs come iwth risk.
PML only comes into risk when you get the JC virus which I have and I am on Tysbri too BUT the risks are so low in the first two years my neuro is not worried about it, however after 2 years it becomes more common and I will have to make the choice later on if I am willing to make this risk.
I know that when I started the drug last year I didn’t have the JC virus 10 month later I did and was told it was more and likely because Tysabri is so strong and turns off most of the immune system it lets things in 
This doesn’t mean it will happen to you.
before I started I was had 2 relapses in the year even tho I stopped Rebif which worked for 4 years but had to stop because of skin rashes. Then they gave me Avonex which after two month I had a relapse and then they knew I had gone on to secondry MS so needed something abit stronger.
Good thing was 3 months after tysabri it cleared up my relapse, my neuro said it is because this drug also heals damage which I thought was a bonus.
The risks of Gilenya I am not that sure on but I was told it slows down your heart rate whice your on it so they have to watch you. My guess is the risks would be connected with the heart the way they spoke of it. One god thing about Gilenya is and why I will prob go on it in 2 years time is, the JC virus does not effect this so no risk of PML.
I hope you make the right choice for yourself.
It is best to get the booklets of both these drugs from your neuro or MS nurse they will tell you everything you need to know about these drugs.
ISSUE: OCTOBER 2013 | VOLUME: 40
printer friendly | email this article | 0 Comment(s)
Fingolimod Tied to Elevated Risk for Leukoencephalopathy
The FDA has issued an alert to the public that a European patient with multiple sclerosis (MS) developed progressive multifocal leukoencephalopathy (PML) after taking fingolimod (Gilenya, Novartis). This is the first case of PML reported following the administration of fingolimod to a patient who had not previously received natalizumab (Tysabri, Biogen Idec), an MS drug that also is indicated for the treatment of moderately to severely active Crohn’s disease and is associated with a higher risk for PML.
|
Fingolimod (Gilenya, Novartis) was recently associated with a case of PML.
Photo courtesy of Novartis
|
| - |
PML is a rare and serious brain infection caused by the John Cunningham (JC) virus that damages the myelin of the brain and usually causes death or severe disability.
Fingolimod is used to treat relapsing forms of MS, and Novartis reported that approximately 71,000 patients worldwide have been treated with the drug. The FDA recommended that patients should not stop taking fingolimod without first consulting with their health care providers.
The FDA issued the alert while continuing to investigate the reported PML case and is working with Novartis to obtain and review all available information about this occurrence. The FDA will communicate its final conclusions and recommendations after its evaluation is complete. Additionally, the FDA is continuing to evaluate the risk for PML associated with natalizumab, which has been approved for the treatment of relapsing forms of MS since November 2004 and for the treatment of Crohn’s disease since January 2008. In a 2012 FDA Drug Safety Communication, the agency stated that 201 cases of PML had been reported among approximately 96,582 patients treated with natalizumab worldwide through Jan. 4, 2012.
The FDA has reported three risk factors associated with an elevated risk for PML in patients taking natalizumab:
- the presence of anti–JC virus antibodies;
- longer duration of treatment with natalizumab, especially beyond two years; and
- prior treatment with an immunosuppressant (e.g., mitoxantrone, azathioprine, methotrexate, cyclophosphamide, mycophenolate mofetil).
Patients and health care professionals are encouraged to report adverse events or side effects related to the use of fingolimod or natalizumab to the FDA’s MedWatch Safety Information and Adverse Events Reporting Program at www.accessdata.fda.gov/scripts/medwatch.
Well until may last year I was completely healthy never ill had a baby with no pain relief in 4 hours and had my own dancing school. Now I’m sore doing housework, struggling to walk any distance. Obviously not handy with a 10 month old a 4 year old and a dog and I split up with my husband the week before my first relapse. Anyway I had 2 major relapses one in June one in November one in September which I ignored as there was ‘nothing wrong’ then another in December and another just now. I started extavia in November I get my MRI done 3-4 weeks then see my neuro again. Saw Gp who mentioned both the drugs as that’s what neuros thinking my ankles are now wobbly my hamstrings appear to be on vacation and my arms get tired quick. I always have low blood pressure have since I was young think it was my dancing I was extremely fit. So it’s sits about 110/60. When I was in hospital with relapses it was sometimes going down to 90/50 so maybe gilenya might not be best option, think I’d lean towards Tysabri Oh it’s difficult but I’m at the stage I need to try something. X
Well I be starting Gilenya in 2 weeks time, doing the pre Gilenya blood and ECG test on Tuesday.
Nothing left apart from Tecfidera, Mitox and Campath are too heavy duty.
Your heart rate I was told only drops slightly on the first pill which is why they keep you in for 5 hours or longer if it don’t go back up.
Thanks hobs hopefully get my scan soon and things moving.
Hi.I don’t post very often,but your post caught my eye.
Have a look here:
I have RRMS,dx in 2006.From 2007-2009 I was in the Fingolimod (Gilenya) drug trial Found out later that I was taking the drug,not the placebo.From 2009-2011,I had no treatment (my choice),despite having frequent small relapses.From 2011 to now,back on Gilenya,thanks to my wonderful new neurologist.
In the 2 years of no treatment,my lesion count doubled.Since being on Gilenya I have had new symptoms,but no relapses.For me,it’s a wonder drug.
To look at me,you wouldn’t know I had MS.
On taking it for the first time,my heartrate did drop a bit,then was ok.Side effects for me:I catch colds more easily.I have had a white cell count that was too low,and raised liver enzymes,but both have always returned to appropriate levels.Can’t think of much else.As it can cause a raise in liver function tests,so I try to avoid taking pain-killers,as I also take lots of other drugs.
When your blood pressure was low in hospital,was it taken when you were ‘at rest’,say lying in bed or sitting,and feeling calm and relaxed?That might explain why it was lower.If you had done some physical activity just before,even just crossing the room,it would probably be a bit higher than the norm for you.I’m a nurse,so I do know what I’m talking about.
One side effect of Gilenya is that it can cause raised blood pressure.
Just let me know if you have any questions.You can pm me if you want.Good luck with your choice.
Brenda x
No G slows your heart rate instead of beep beep beep its beep Beep Beep
In regard to what?I was specifically talking about having a low blood pressure when at rest.The litterature describes the possibility of having a raised blood pressure as a side-effect of the drug.
As far as I can see,having a lowering of your heart rate (braycardia) is temporary (first dose only).
I was on Rebif for nine overall good years - I still relapsed but always pretty much fully recovered until a nasty eight week one at the end of 2012. It was my second that year so the decision was taken, after a new MRI scan (my first since diagnosis in 2001) to start Gileyna at the end of May 2013.
Honest opinion? It’s been shit for me. I’m currently on my third relapse and I have had new symptoms since being on it particularly spasicity, which I’ve never had. I cannot remember the last time I had a good day.
I had a new MRI scan this week and I’m waiting for a referral to Addenbrookes and I am going to fight for Tysabri. I think it will be a fight as the neurologist I saw a few weeks ago considers my MS to still be mild as my reactions to everything are good and I’m still walking unaided although my foot drop is now more pronounced - but she agreed Gilenya is not working for me (I’m now the fourth patient coming off it - there appears to be only one success story at my NHS Trust that I know of)
But there is no point going backwards to first line treatments - it’s too late for that. My first relapse was at the end of 1999 so I know things are naturally going to progress but I have deteriorated since being on Gilenya. Now is the time I need to be on the best thing available to stop things getting any worse and keep me walking. Yes, I am terrified about PML but it is far, far more important right now to get my life back.
Oh, I have no idea if I’m JC+ or not but really don’t care. The sucess stories about Tysabri that I’m hearing talk about general improvements in well being and residual damage and cuts relapses to zero in some cases. I’m not ready to be beaten yet.
Gilenya only affects the heart rate on the first dose which is why you need to be monitored in hospital for the first eight hours after taking it. I’ve never had any infections or colds since being on it - but that is the only good thing.
After the 7 months I’ve had I’m leaving towards tysabri if I get the choice My mum doesn’t really want me to have that would rather Gilenya. We’ll see what my scan says but it was been never ending and always leaving risidual damage don’t think I can afford to wait much longer. Esp if you found spacisity worse on it. I’m stiff enough. Hope you get sorted soon tweakle tart. X
It is very common for nearest and dearest to be more worried about Tysabri than is the person who actually has the MS. The risks of the drug are, I think, easier for civilians to understand than are the realities of MS and what it can do. To understand the realities of MS, and be best placed to make a well-informed decision about treatment, you kind of have to have it!
A
Maybe wines the answer. Though I never drink so prob not the best of ideas. Although when I had my first attack I just kept falling and couldn’t speak (no one told me) I kind of zoned out. My mum said to have wine it wos hep and my arm actually worked again lol. Though maybe shouldn’t be used a first line treatment.
I’ve just started on gilenya 3 weeks back, after spending the day in the hospital watching my heart rate, which did nothing but beat normal, which for me is very slow anyway, I was in hospital with another lady who’s heart had a little wobble, this is a normal side effect of the tablets, but her heart returned to doing its normal thing after half hour, she later went home like me with our precious tablets in our hands.
I’ve had no side effects from taking gilenya, and the puncher marks from the rebiff injections are finally disappearing
Good luck with your choices