Fingolimod or Tysabri?

Hello everyone, I hope you are all as well as can be!

I was diagnosed in the latter parts of 2010 after having symptoms for 3-4 years. I started on copaxone and then transferred to betaferon, I’ve been pestered (for my own good I presume!) to change to second line treatment by three neurologists in the space of three weeks, I did decline Tysabri before starting the betaferon as I was worried with the PML risk.

My consultant reckons my MS is quite aggressive and suggests I should change over, but I’m obviously worried! I don’t have much support around me and I’m still fairly young (just turned 20), my father passed away from a cardiac arrest for an unknown reason leaving me very worried about the fingolimod. It seems I must make a decision soon as things are going very quick!

If anyone has any advice or tips on making this decision I would be very grateful.

I have received a result of negative from the JC virus blood test, which if only made things simpler it hasn’t!

Thank you very much.

Zak

Hi Zak,

I was diagnosed beginning of 2009 after have symptoms for many years previous but obviously not realising I had MS.

I have had a few bad relapses since, the main horrendous one in April this year whereby I couldn’t drive as I couldn’t feel anything from my waist down. I then could hardly walk. I was sent to hospital for a 3 day steroid infusion and also had an MRI scan.

My Consultant said from the results my MS had now become aggressive and highly recommended I try Tysabri. I like you had major concerns, but I decided I needed to do whatever was necessary to slow down this hideous illness. I had a blood test and my result was JC virus positive.

I spoke to my MS nurse who assured me that I needn’t worry as they will keep a close eye on me and look out for the symptoms of PML. There are 2 known patients with PML who have successfully got through treatment and are both back at work.

I am now having my 4th Tysabri infusion on Christmas Eve and so far I haven’t had an adverse effects from it. I was told I might not see any significant difference until at least 6 months so I constantly hope it will work and make a difference.

Good luck in your decision and try not to stress about it.

Sandra

I’ve been on Tysabri for a year and am JC positive. It’s given me my life back! Took about 6 months to gradually notice improvements but I’m feeling more like my old self again. Not everyone has the same results but my consultant says it puts a handbrake on the ms - anything that stops or reduces the relapses is worth it in my book! Good luck with your decision.

Hi Zak

I was on Rebif for a year but had 2 relapses so my neuro gave me the option of Tysabri or Gilenya (Fingolimod). Like you, I was very worried about PML and I’m JC posivive so I opted for Gilenya. I’ve been on it since April and can honestly say I haven’t felt better since my first attack of MS. I’ve had no side effects and no relapses. Long may it continue. Best thing that’s happened to me since diagnosis.

From what I hear about Tysabri, the benefits also outweigh the risks.

Good luck whatever you decide. Let us know how you get on.

JZ

Hi Zak

I was diagnosed in April 2009 following 2 relapses within 3 months, the second one was numbness from the waist down and I could barely walk as my legs seized up. I had 3 days of IV steroids to get me moving again and it was still many months before I could walk any distance.

I was on Rebif for 4 years after that and had one sensory relapse shorting after starting on it, then had 3 years relapse free. This year I had 2 back to back relapses in 6 months again affecting my legs so my neuro advised switching DMDs. He didn’t feel it warranted Tysabri though so I opted for Gilenya (fingolimod). There is a history of severe heart disease on my mum’s side of the family so I was very concerned about that but my heart tests (eventually) showed that I was okay to take fingolimod. They won’t let you have it unless a cardiologist is quite happy with your test results so you need have no fear there.

I’ve been on it for just over a month now and haven’t had any side effects whatsoever. It’s so much easier taking a daily tablet and I’m hoping to have a few more years without any relapses.

Good luck whatever you decide.

Tracey x

‘For your own good’, for sure. The doctors aren’t making this stuff up.

I really feel for you, having these tough decisions to face as such a young person. I had had MS for 12 years or so before it got so aggressive that I was offered Tysabri, and by that time it was really taking lumps out of me and so the decision was actually an easy one.

I guess that, in your case, the doctors can see that your MS is active and are keen to stop it in its tracks before it causes too much permanent damage and makes more of a mess of your life than it already has done. They are trying to buy you time and keep you well and let you live your life. Tysabri really can stop MS in its tracks - it is a very effective treatment. Against the risks of PML (very, very small for people who remain JC negative, a you are) have to be weighed the risks of unmanaged, highly active MS. There are no risk-free options, unfortunately. But some risks are bigger than others.

Good luck with your decision.

Alison

My MS was really aggressive right from the start I was put on Avonex right from the start but I was still relapsing around every 4 or 5 weeks things where just getting worse with every relapse till it got to the stage where I needed a wheelchair I just had the use of my left arm bowels and bladder didn’t work right and fatgue has a nightmare. I begged my neuro to let me have Tysabri he told me about the whole PML thing but I didn’t care I’d no life and would have risked anything just to ease the relapses thats all I was told Tysabri ment do was to was maybe reduce the relapses to me that was a risk worth taking. I began Tysabri In August 2008 and never had a single relapse that alone would have been great but Tysabri has done so much more for me more then I could have ever dream’t off I was out of a wheelchair and walking with a crutch after 3 months and by 7 I didn’t even need that. I’m JC negative but I was on Tysabri almost 4 years before I was tested there just was no test when I started Tysabri so I could have been positive all along but there’s no risk would out weigh the benefits for me I have my life back and thanks to Tysabri I really turned my life around and now I can bring the fight to MS and not have to sit back and let it distroy my life relapse and a time :frowning:

Hiya guys

Thank you so much for the replies, really has reassured me and made me a bit more confident in taking the treatments, at the moment I’m inclined to taking the tysabri. But one worry is still there, has it had a huge impact on catching of colds, viruses and flues etc. As it would seriously damage my studies which really worries me, I guess to an extent it’s inevitable but is it much worse in that aspect compared to the first line treatments?

Thanks again, look forward to your response(s).

Zak

[quote=“zak_492”]

Hiya guys

Thank you so much for the replies, really has reassured me and made me a bit more confident in taking the treatments, at the moment I’m inclined to taking the tysabri. But one worry is still there, has it had a huge impact on catching of colds, viruses and flues etc. As it would seriously damage my studies which really worries me, I guess to an extent it’s inevitable but is it much worse in that aspect compared to the first line treatments?

Thanks again, look forward to your response(s).

Zak

[/quote] No significant impact on minor nuisance infections, but major impact on disabling MS relapses, glad to say! :slight_smile: Alison

[/quote] No significant impact on minor nuisance infections, but major impact on disabling MS relapses, glad to say! :slight_smile: Alison[/quote]

I think that’s enough to put my heart at rest!

Thanks a lot again!

Zak

Hya Zak,

Me again!

Re your post saying your worried about impact on colds, flu etc. Do you not already have the flu jab?? I used to suffer horrendously when I got a cold which innevitably turned into flu like systems but since I had flu jab I haven’t had a cold since, even though my kids and husband have had bad colds! Just had my 3rd year of having flu jab. I highly recommend you have it.

Take care

Sandra

Hey Zak

I have been on Tysabri for over 4 years and I have had not a relapse since starting it. I tried both Betaferon and Rebif respectively but I was relapsing on avearge 3 times a year whilst taking them. As for this PML malarkey, I ain’t even fussed, I didn’t even wanna take the test as there is no way that I will be coming off this treatment until they tell that it so longer working for me as I will have progressed to SP. Why worry about the risk of PML when you have a 0.4% chance of getting it? For me those odds are far too long compared to the beneifts it brings. I find it quite unfathommable that people refuse to take Tysabri because of such a low risk of PML (personally I think that people who think like this are nuts but this way oif thinking comes down to individual differences)

Since starting it I have been out DOwn Under to see me bro, completed an Access to HEalth Studies course, didn’t get on the p/t OT course I wanted to and I am doing A level pscyhology and sociology at the local sixth from and I start an Anatomy and Physiology course at a local college in January. None of this would have been possible without Tysabri. I am also very very lucky that I don’t suffer with the chronic assitude fatigue that 90% of MSers get and this means that I can play wheelchair basketball to keep myself fit.

Of the two drugs you have been offered and given the familial history of possible heart problems I would be leaning towards Tysabri. HTH

Andy

Hiya

I’ve had the flu jab done this year, last year the viruses caught me early on so I had no I just couldn’t take it. My main worry is those I live with don’t share the same understanding as we do, they don’t realise how it’s so easy for us to catch a bug or too!

Anyways, I thank you guys so much, I’ve made my decision it’s just dependant on whether my MRI scan will meet NICE standards, I don’t think I would’ve been able to do it without you guys!

Thanks a million!

All the best.

Zak

Hi Zak

I’ve never been healthier than I am now I’ve not had a cold or flu since I started Tysabri and I’ve been on it 5 years past there in August I do get the flu jab to and I go along with Andy in his way of thinking about PML people do worry about the risks but the way I think there are lots of things out there that can harm or kill you even getting cancer the risks are in the singe figures but I don’t know of anyone that spends there time worrying about catching that and the benefits you can get with Tysabri far out weigh the risks I’ve friends with MS that aren’t doing so well with there MS would risk anything to try it even for just a small chance it might work for them but it doesn’t work for there MS :(.

I hope you had a good Christmas and 2014 is a good year for your MS

Mark

Hiya

I’m feeling more and more confident that this change will do me good, thanks so much guys. Maybe it’s just the way it’s put across (which I won’t say is a bad thing) is what causes the worry.

Best wishes to you too Mark and to all those who’ve replied! I wish the same for all of us with this MonSter!

Thanks

Zak