Tysabri/Gilenya

[lee P]

Hi everyone,

 

Hope your all doing well (as well as you can do with MS ). I have'nt posted on here for a while but I was wondering if anybody on here had any experience of Tysabri or Gilenya ?

I've gone downhill a bit lately with 3 relapses since December, 4 in total in the last 16 months. I'm having my latest one now

As such my consultant has suggested Tysabri if my MRI shows new or active lesions. I would think that's the case though considering. He first mentioned trying Gilenya before I mentioned Tysabri.

After trawling the net Tysabri sounds great apart from the potential side effects but there's not much 1st hand experience from Gilenya users.

Hopefully one of these drugs will slow this ******* condition down because Copaxone does'nt seem to have helped

[Hezza]

Hi Lee,

Nice to hear from you again. I don't have personal experience of either drug so can't help there. I'm not sure that we have any members who are on Gilenya, it certainly doesn't ring any bells with me.

 

There are a few on Tysabri though. Mustard created a blog when she started on it which may be helpful for you. If you haven't already found it it's here: http://ms-people.com/forum/blog/50-mustards-blog2/

 

Did your Neuro give any reason for suggesting Gilenya? I think I'd be curious about what he thinks of it as an option. Clearly he must believe there would be some benefit in trying it or he wouldn't suggest it.

 

Hopefully some of the other members will be along to share their thoughts soon.

 

[PTN]

Hi Lee,

 

I started on Tysabri three months ago and couldn't be happier. I was told that Gilenya was only an option once I had tried other meds for at least 12 months before.

 

With Tysabri the main issue is developing PML. Over half the people on our programme at Southampton General tested positive for the JC Virus but still went ahead with Tysabri ( I was negative). Because you are seen every month and continually assessed for PML it shouldn't be an issue. If you do show signs of PML it is a very slow progression so your body is flushed of Tysabri and your immune system is reinstated and will tackle the PML. There have been no cases of PML in this country in the 5 years Tysabri has been available.

 

The only side effects I have experienced are patches of fatigue and headaches during each month but they are a small price to pay for what it has done for me. I have walked unaided now for 8 weeks and generally feel great. The fatigue and headaches are largely due to repairs being made now that i am not under attack. I really do feel so much better and would recommend Tysabri to anyone considering it.

 

I was first diagnosed in February with SPMS but then downgraded to RRMS as I was actually having attack after attack with no respite. My decline was quite rapid over a 12 month period and i thought I was heading for a wheel chair. Now, thanks to Tysabri, I have started back on a fitness programme and intend to get back to the sports I love and hope to achieve my goal of running the London Marathon for the MS Society. Tysabri has given me my life back. It has not only stopped the progression of the disease but has given me back functions I thought were lost.

 

I know everyone has their unique symptoms of this condition and everyone will react differently to the DMD they choose but Tysabri has worked for me and for those people I see each month for our joint infusions. Good luck with whatever you choose.

 

Paul.

Edited 1 Aug 2012, 11:51 am by PTN

[lee P]

Thanks for the replies folks,

Your positive experience with Tysabri is great to hear Paul, its seems every persons account of taking Tysabri that i've read online is positive. And thats literally, I havent come across a negative one yet.

I've been going downhill fast over the last 10 months and like yourself I've been thinking that I could be heading for a wheelchair in the near future as I am very unsteady walking even with a stick

PML is my main worry with Tysabri but what you have said is reassuring if it does occur.

The more I read about Tysabri the more positive I feel towards it and if it can give me back some of what I once had I would be a very happy bunny

 

As for why I was offered Gilenya first, I'm not sure as the conversation turned to Tysabri after I mentioned it and Tysabri is what he put in his notes as the next possible step in my treatment. Going by what I've read I think I would rather go down the route of Tysabri anyway

 

Thanks

Lee

[lee P]

Thanks for the replies folks,

Your positive experience with Tysabri is great to hear Paul, its seems every persons account of taking Tysabri that i've read online is positive. And thats literally, I havent come across a negative one yet.

I've been going downhill fast over the last 10 months and like yourself I've been thinking that I could be heading for a wheelchair in the near future as I am very unsteady walking even with a stick

PML is my main worry with Tysabri but what you have said is reassuring if it does occur.

The more I read about Tysabri the more positive I feel towards it and if it can give me back some of what I once had I would be a very happy bunny

 

As for why I was offered Gilenya first, I'm not sure as the conversation turned to Tysabri after I mentioned it and Tysabri is what he put in his notes as the next possible step in my treatment. Going by what I've read I think I would rather go down the route of Tysabri anyway

 

Thanks

Lee

[Christina]

Hi Lee

 

I'm currently waiting to see if I'm eligible for Tysabri. I'm waiting for my neuro to report my last MRI findings. I'm currently on Copaxone and have no real idea if it's working, so finding out the results of my MRI will be very interesting. I also tested negative for the JC virus, which really puts your mind at ease when trying to decide whether to give Tysabri a go.

 

I understand the criteria for taking Gilenya (fingolimod) is quite strict. You have to have tried and failed on an interferon DMD in order to be eligible. It's a very expensive drug, even a bit more expensive than Tysabri. I won't be eligible for it as I'm taking Copaxone which doesn't qualify me.

 

Best of luck with whichever one you go with. I also think Tysabri has very positive reports from people who take it.

 

Chris x

[lee P]

Hi Christina. My Neuro might have suggested Gilenya as I was on Rebif before the Copaxone. Rebif didnt do me much good either. If I am offered Tysabri fingers crossed i'm JC negative.

 

P.s Its bloody wrong though that by choosing the "wrong" DMD at the start means that a potentially life changing treatment is denied you now

Edited 1 Aug 2012, 11:11 pm by lee P

[Christina]

Hi Lee

 

I, too was on Avonex before Copaxone. My understanding is that I'm not eligible eventhough I failed on Avonex over 2 years ago. I guess it depends how strictly your Neuro will apply the criteria and I'm glad to hear he's suggesting it for you. When I consulted the MS Society about it they said they thought I wouldn't be eligible, as I needed to be currently on an interferon. Who knows!

 

Chris x

[lee P]

Well I'm now on the road to having treatment with Tysabri

 

Emma, my MS nurse, phoned meon Wednesday to let me know that my MRI scan showed new lesions (no surprise there) and that I should have bloods taken this wednesday to check for the JC virus. Then I have a meeting with my Neuro on Oct 23rd to discuss the findings and go over the treatment details and if everything is ok I will have my 1st infusion on Oct 24th.

 

I'm obviously hoping for a negative result in regards to the JC test but i'm going ahead with the treatment even if it's a positive result.

 

I just hope it works as well for me as it's worked for others.

 

On another note I've been reading about a new MS vaccine thats being tested called Tcelna that sounds brilliant. So far it's had all the success of Tysabri but with NO safety issues ! I'll be keeping an eye on that one !

[Scully]

Hello Lee,

 

Pleased to hear that it looks as though you qualify for Tysabri, not so pleased you have some new lesions though.

 

Really hope the JC virus test is negative, it sounds a tad risky to begin with Tysabri if the JC virus is positive though, I wonder if your Neuro will back that decision. It may well be worth mentioning the Tcelna ? Perhaps there is a trial you could be signed up to? Although I gather the trials are mainly in rhe U.S......It's always worth asking.

 

Scully

x

Edited 1 Oct 2012, 8:08 am by Scully

[PTN]

Good for you Lee,

 

Fingers crossed regarding your JC test, a negative result will be one less thing to worry about.

 

I'm now 5 months into Tysabri and keep going from strength to strength, so much so I have just booked a family ski trip for January. Maybe a little foolish but I know I won't be the only one falling over so I'm going for it :-)

 

Keep us posted.

[Hezza]

Hope all goes to plan, Lee.

 

[mustard]

Good luck with it Lee, fingers crossed for the JC result being in your favour, but you seem to have your head around it either way. It's a tricky decision imo but once made it feels okay in my experience.

I'm still on the tysabri, am definitely a lot better than I was. It is possible I've had a small relapse the last few weeks, but even if so it's nothing compared to the ones pre tysabri.

 

The MS nurse also told me that if I failed on tysabri,or became JC positive, they would move me over to Gilenya and that the criteria wouldn't apply 'this far down the line'. She also said that the drug company had done a deal with the NHS to do gilenya for 12K a year (per patient) compared to the 30k it costs for tysabri. This of course may vary from NHS trust and hospital to hospital. But it could be, if it is cheaper, why it is that your neuro offered it first.

 

Good luck with it anyway :)

[lee P]

The MS nurse phoned today to give me advanced warning before I see the neuro in 2 weeks about my JC test result.

It came back positive :sadwalk: so I would think if I do go on it then it will only be for 2 years but lets see what he says in 2 weeks

 

Lee

[PTN]

Hi Lee,

 

A negative result would have made your choice so much easier. Having said that over half of the people on my course are positive so thats worth thinking about. Even if you were negative you would only be signed up for two years at which point you get a review.

 

Drop me a message if you want to have a chat about it.

[Hezza]

Hi Lee,

Sorry to hear that your JC test came back positive. You seem to have thought through all the possibilities yourself and hopefully your appointment with the Neuro will help to clarify things and work out a plan.

 

Let us know how you get on.

 

[Christina]

Hi Lee

 

I too am sorry to hear your result was positive. It does make the decision more tricky, but I also am aware of lots people who take the risk for 2 years. Virtually everyone I have chatted to has told me they are very pleased they went on to Tysabri and are generally feeling much better.

 

I see my neurologist next Tuesday for his decision as to whether my latest mri qualifies me for the treatment. I know I have a new frontal lobe lesion but whether he decides it is new enough is another matter.

 

I think it's always tough trying to make decisions about treatments, and takes me ages while I weigh up the pros and cons. I hope you can get to a place where you're comfortable with whatever you decide.

 

Christina x

Edited 10 Oct 2012, 8:38 am by Christina

[Christina]

I just got a letter from my neurologist today with my MRI results, showing I have a few new lesions, and that means I will now definitely be eligible to start Tysabri if that's the way I want to go. More discussion next week when I go to see him. Now I need to start to seriously consider it - eek!

 

 

[Scully]

Pleased to hear that the news was how you wanted it Chris. Not so the new lesions of course, but Tysabari seems to be working for quite a few people here thus far.

 

Good luck with it

 

Scully

x

 

PS. Glad to see I'm not the only one awake in the 'small hours'.....again !

[lee P]

Sorry to hear about the new lesions Chris but at least you will be eligible for Tysabri now.

After much thinking I definately want to give Tysabri a go as i dont like the sound of Gilenyas side affects, especially as it doesn't seem to be as effective as Tysabri.

Good luck with the Tysabri if you choose to go on it Chris but I've got a feeling that deep down you've already made the decsion to go for it

[Christina]

After my recent appt with my Neuro, things have become clearer. I have some new brain lesions, so he thinks Copaxone isn't keeping my MS at bay as he would like. Plus he's concerned that I don't develop another spinal cord lesion, as I already have 4. He warned that it wouldn't be good news if I do, as it would most likely tip me into SPMS, so he is keen I start Tysabri.

 

Now the problem is when, as there hasn't been enough nursing staff and space on the ward to accommodate new Tysabri patients he tells me. A letter was sent to the Chief Exec by another patient to complain and the situation has improved, but it's still a problem. So fingers crossed I can get a space, otherwise the Chief Exec will be getting another letter! I still have a feeling this might not happen quickly butwe shall see when I see my MS nurse in 2 weeks.

 

I'm keen to leave Copaxone behind now, as I've had 4 post injection reactions, and they really aren't nice.

 

Chris x

 

 

[Hezza]

Chris,

A little clearer but still a waiting game for you. I hope you come away from your appointment with the Nurse at least a little further forward.

 

[lee P]

Fingers crossed for you Chris, hope you get things sorted asap. How frustrating to be given the go ahead then told spaces are limited.

 

I've only been on Tysabri for a week but already I feel my balance is better (I dont steady myself so much with the walls and furniture as I move around the house nowadays), my bladder urgency has diminished and I find getting out of the armchair easier.

2 days after the infusion I took the dogs out on one of our regular walks and walked twice the distance I'd walked two weeks previously in the same amount of time

I've not been able to do it since so I dont know whether it was the Tysabri or all in my head but whichever it was I'll take it

 

I'm hoping it was a taste of things to come.

 

Good luck Chris, hope you start treatment soon

[PTN]

Hi Lee,

 

I'm glad to hear you're feeling better already. I think it will be a nice mix of the Tysabri and a positive attitiude that has given you an initial boost. I was having relapse after relapse without remittion and as soon as I had my first infusion I got respite from the attacks and my body was very grateful. Within four weeks I could feel I was on the mend. Be careful not to over do it (and if you achieve this let me know how) as your MS will still bite you on the bum every now and then but for the most part you should feel so much better. As each infusion passes and you are longer without a relapse your body will repair what it can slowly but surely.

 

Expect to be tired the night after each infusion and possibly the next day too. I also found that I would have the occassional spell when I didn't feel good for a couple of days each month (headaches/head pressure, fatigue etc) but my nurse suggested that would be down to the repair work taking it's toll rather than a relapse. I've not had any problems this month.

 

Anyway, best of luck to you and keep us updated as there will be others who are positive for JC and will be keen to hear your experiences while they consider Tysabri.

 

Chris, I'm sorry your having to fight all the way. It is so desperately unfair that where you live should determine the level of care you receive especially when all you need is a chair and a drip for 2 hrs a month. I think you should write that letter now and make as much noise as you can.

[lee P]

Hi Paul,

 

Thanks for the comments, you're right I have got to learn not to overdo it but i'll let you know when I discover the secret to that

I completed that same walk again a couple of days ago but it took about 15 minutes longer than last time and it wasn't as easy to do either this time but still it's an improvement.

There's a guy in my infusion group who is on his 6th infusion, he strode into the room when he arrived like he was on a power walk but said later that when he started Tysabri he had trouble walking full stop so that was very encouraging to hear.

 

Like you I too found that I felt very tired the night of my infusion day and also the day after but felt fine from then on.

I had an off day yesterday with some heavy fatigue but on the whole things have been better and I feel positive for the future

 

Hope we all continue to go onwards and upwards

Edited 1 Nov 2012, 11:31 am by lee P