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Tysabri or Gilenya, please help...

hiya to All. I was on Copaxone for a long time but have had 3 relapses in 6 months so my neuro says its no longer working and I need to consider either tysabri or gilenya. Can anyone please give me advice on either of these.

My main problem is weakness in my legs, i use a stick and scooter etc.

I have a young family and am very scared by the possible implications of the PML infection, I have tested positive for the JC? virus.

If anyone can offer advice on this which will help me decide I will be very grateful thanks.

Hi I have been on Tysabri for over 2 years now after a brake and never had any reaction so far (touch wood). For me it had been great give me energy and most importantly no relapse whilst on it (touch wood again) I think risk of pml are small for the first 2 years of been on it. So I would recommend it. However every1 is different and react differently to treatments so sorry but the final decision is down to you but hope my experience of it helps aid your choice

Hi,

I have been on Gilenya for nearly a year and am doing well.I have had new symptoms but they weren’t classes as relapses.

My neuro did say that if Gilenya didn’t work then I could have Tysabri.Taking Tysabri stresses me a bit,so I’m glad that Gilenya seems to be working.

I get a lot of headaches,don’t know if it’s a side effect.Also I get colds more.

If you have any questions about Gilenya,please ask.

Take care Brenda x

Only you can make the decision, but for what it’s worth, I would opt for Gilenya if I were JC+. One caveat though - that if Gilenya didn’t work, I would still be able to go on Tysabri. That would be a key question for the neuro and, if he said yes, I’d want it in writing!

Of course, it’s easy for me to make that decision - it’s not real for me after all. And if my last few relapses had been bad ones, then I might decide to go straight for Tysabri no matter the PML risk. Tysabri’s the best thing out there at the moment - 81% reduction in relapses from clinical data plus a major effect on reducing progression (can’t remember the number, sorry) - pretty damn impressive data.

Sorry, this probably isn’t helpful at all!

Good luck with the decision. I hope that whatever you go for works really really well for you.

Karen x

Hi Anon

As said above obviously it comes down to personal choice. I am due my 7th infusion of Tysabri next week. I also tested positive for the JC virus but I didnt find that out until I had had 3 infusions. I choose Tysabri after REBIF stopped working for me - and ultimately I have to say I went for it purely because it was the most aggressive form of treatment available to me at the time. Although I havent seen any marked improvement in myself and the symptons I already had - I have not had anything new or any relapses. Obviously PML is a scary thought - but after talking it through with my neuro team, family and researching on the internet I felt that the chances of that were so slim that they didnt concern me enough not to go ahead.

I cant comment on other hospitals - but I have mine in Southampton and am so well looked after down there, they keep a good eye on you and I am really happy I went for Tysabri.

Good luck with your decision.

Hayley xx

Hi Anon

I can’t help with Gilenya but I’ve been on Tysabri 4 years past on the 7th August for me its been a great drug but everyone reacts to it different before I started Tysabri I was having relapse after relapse about every 4 or 5 weeks I ended up using a wheelchair thats only half of it but since starting Tysabri I’ve never had a single relapse for me I’d have been happy with that but I’ve now got my life back I’m out of a wheelchair walking unaided and feeling almost normal.

It didn’t happen over night but Tysabri gave me the chance to fight the beast I call MS and with the help of physio, yoga and being able to start the gym a couple of years ago I am where I am today.

But at the end of the day the choice is yours I’m JC negative but only found that out when I was signing for my 5th year of Tysabri It wouldn’t have mattered if I was positive it wouldn’t have changed how I feel.

I don’t have any kids at the minute but someday me and my girlfriend would love to and the way I look at it if I had children and ended up the way I did before Tysabri I could never look after them I couldn’t even wash and dress myself once and I would feel so bad if it where them had to look after there dad :frowning: but being on Tysabri has gave me that hope of having children again.

Thats my feelings on Tysabri and the small risk of getting PML is nothing if you seen the risks of getting other things in life the way I looked at it when I read the risks of getting cancer are as high as 1 in 6 and there’s lots more risks far higher than the chances of getting PML I would go mad walking or sitting about worrying about the what if’s lol

I am still relatively new to Tysabri, but I think I am finally feeling some benefit after 5 infusions. The brain fog has lifted, I seem generally a bit less tired and I have colour in my cheeks again (although that might be the sun). I can’t walk anywhere near the distance that I did but I get around, I still tend to the balance problems (wobble over if I turn in a hurry, or try and be clever and put my socks on standing up) my hands are still numb. But sat down and thought that this is probably as good as its going to get, feel better than I have done in over 18 months. I resisted Tysabri for over 3 years. I managed my MS with just steroids after Copaxone started not liking me, but the side effects of the steroids have left my bones brittle. I wondered initially if it was the right thing after the first infusion as I felt terrrible but that seems to have gradually got better and I am starting to think I made the right decision, although I worry about every odd symptom.

I tested JC negative but that doesn’t mean that JCV stays away just that its not present at the time of testing. The risks of PML in the first 2 years are very low and in this country we have yet to have a confirmed death due to PML. I have a young family but I decided that the benefits outweighed the risks and I had to seize every chance to be the best for my children.

Hi All

I’d like to say a very big thankyou to all who have replied to me and given me support and advice. I really appreciate your time. I’m still anxious and unsure but I guess I’m not the first and wont be the last… many thanks again x

Hey

I have been on Tysabri for 3 years abd bfeore that I was averaging 3 relapses a year before starting Tysabri whilst being on both Betaferon and Rebif. Since I have started it I have completed an Access to Health Studies course, unfortunately I didn’t get on the course as it was heavily over subscribed. This would not have been possible but for Tysabri.

I am not even fussed about the 0.3% risk of PML IF I am JCV+. I have told me neuro team in no uncertain terms that I don’t want the test done as I will not becoming off Tysabri as the benefits for me far outweigh the risk. With JC virus, what happens if the test comes back clear and then positive, you can get infected with it any time, so are these tests really worth it? I think I slightly frustrate my MS neuro as I am quite cavalier in my attitude towards Tysabri and the risks that it entails and also cos I speed up the saline drip so that it goes through in literally 8-9 mins and then go! They have got used to it and I have told them no-one will be held accountable as it is ME taking the risk of speeding up the saline solution, I would never interfere with the Tysabri infusion itself.

I guess that the decision of which treatment you plump for is up to you, but for me Ttysabri is the no brainer choice of the two as I must admit that the side effects of Gilenya worry me more than the side effects of Tysabri. Good luck with whatever choice you make.

Andy