Hi
I was diagnosied with relapse remitting MS in April 2013 and started with Avonex in June, i have had 3 relapses in a year and on my second course of steroids. Been so see my consultant this week who has suggested Tysabri as being my next step as the progression is quick and having a serious effect on my mobility and cognitive functions, vision included. I am having the JC virus blood test this week and another MRI. I have been reading the literature but until i get the test back i don’t feel a can make a decision.I just feel it’s moving too quickly and i am still coming to terms with the diagnosis itself.
I was also offered one of the new daily tablet form treatments but can’t remember the name! But they don’t know the long term effects .
Does anyone have any experience of Tysabri? any comments welcome, many thanks x.
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Hi FiMarie, my 16 year old daughter started on Tysabri in November. She was diagnosed in May 2013 and started on Rebif, she continued to have relapses and have side effects from the Rebif. She was recommended to go on Tysabri. When I read the literature and stuff on the internet I went into melt down. I could not think straight or come to a decision as was so scared of PML and the thought of her getting this and dying. She had another MRI and had more active lesions so it became a no brainer, she was JCV negative so she started the following week. I can’t say I am totally ok with her being on it and until she has another MRI in 3 months and they tell me she has no more active lesions and the ones she does have are now less bright we won’t know if it is working, what I can tell you is she was diagnosed in May after a huge relapse which landed her in hospital for 2 weeks, she then had 6 relapses, 4 doses of steroids, 1 shingles virus and her life pretty much stopped. Since starting Tysabri she has not had relapse but her life is not much better yet as she is still getting over all the relapses she suffered last year. The chances of PML are very very small, the chances of her being disabled by the amount of relapses was very high so it became a question of quality over quantity. I have read everything and although the risk is very small it still scares me. The risk is 1 in 10,000. The longer you are on it the higher the risk, after 48 months the risk gets bigger, but if it improves your life and keeps you more able until a cure is found then I thought it was worth it. Talk to your MS nurse and get as much information from them and the MS society website, please don’t do what I did and surf the internet just looking for stuff as there is a lot of scary stuff on the internet which is unproven and scare mongering to try and get you to buy miracle cures. I hope this helps. Lx
This is a useful guide to risk, and the search facility will reveal lots more reliable information.
http://multiple-sclerosis-research.blogspot.co.uk/2014/01/clinic-speak-what-is-high-pml-risk.html
HI
Thanks for your comments they are are great help. I am sorry to hear about your daughter sounds like she has had a terrible time and it must be heartbreaking for you all. I have a 16 year old daughter too and i would also be devastated.I have the thought that if i can lead a good quality of life and if my test comes back negative then to me it is a risk worth taking to be able to hopefully carry on rather than the relapses and disability. I am not sure if i can go ahead if it is positive though , but i can’t think about that until we know for sure. My MS nurse has been fantastic, and she is zending me some information on the new tablet form that has just been approved but they don’t know the long term effects so in a way with the Tysabri you know what you are getting and can come to terms with it .
I really hope your daughter’s life gets back on track soon, do they think that she can revert back to the interferons at some point in the future? I have heard from the MS nurse that on occasion the disability has been reversed, but i suppose this is quite rare but wouldn’t it be lovely x
Thanks once again fo rthe good advice x
Thanks for the link Whammel, that’s really helpful and clear.
Thanks Whammel for the link, really useful information, good and clear to understand!! Cheers
Hi FiMarie,
When I was diagnosed I was put on Avonex I gave it almost a year but I was relapsing every 4 or 5 weeks my mobilty got so bad I ended up in a wheelchair the Avonex left me feeling like rubbish after every injection but I started on Tysabri in August 2008 and since starting I haven’t had a relapse I improved month after month even my MRI’s showed things getting better on the inside I’ve less lesions now then I had before I started Tysabri at least half I’m JC positive but I don’t even give it a 2nd thought I’m out of a wheelchair take my dog a good walk every morning go to the gym workout and swim a few times a week most walks I dont even need a stick.
I was so lucky Tysabri has done what it has for me most it has stablized there MS so the quicker you get on it the better. maybe if I’d have got on it at the start before things started to get really bad I would have still been working but in a way I’m glad I went through what I did cause I know how good Tysabri is how lucky I am and how good Tysabri is when my neuro asks do I want to come off now I’m in my 6th year and I’m JC positive I ask him is he joking I’ve seen how bad MS can be I want to live life now and enjoy while I can and it not just try and survive.
Mark.
HI Mark,
Thank you for your positive and reassuring comments. It is nice to hear from someone who is JC positive and read your views as the decision is a harder one to make taking into account the risk factors but as you say (and i am of the same mind set) that having a good quality of life whilst we are here and doing the things that we enjoy with our families and friends is so important, and life in general!!.
I am pleased to hear that you are doing so well and it helps a great deal with my decision to go onto it, negative or positive.I wish you all the very best. Take Care
FiMarie.
I’m facing a similar choice OP.
I was diagnosed Dec 2012 and went onto Copaxone. In June 2013 my neuro said he wasn’t happy with how active my MS was and a brain scan showed 3 new lesions so he suggested I change meds as he felt Copaxone wasn’t working for me.
I decided on Gilenya and have been on it since Nov 2013 but my bloods have indicated that my liver is not tolerating the Gilenya and it’s also working almost too well as it had totally annihilated my immune system. Before Christmas my MS nurse said they’d leave it until the New Year and do more bloods and see but if they were still the same I might have to come off Gilenya. Had them done and they are still not ideal so I’m waiting on the MS nurse to get back to me.
I’m dreading the thought of Tysabri. Not the drug itself per se. I’m JC negative thankfully. But for me, I have this notion that it’s the “last resort”. What it Tysabri doesn’t work? Where do I go from there? How many years max can you stay on it because I’m only 31 and I don’t want to be using the last line of defence already!
Also, travelling to and from the hospital (a couple of hours away) is going to be a killer every month. There’s the cost of the travel plus the loss of a days wages every month. It’s not a lot but as a single parent, I’m already struggling to make ends meet and I earn too much on paper to qualify for any benefits (they don’t take into account the days unpaid for hospital appointments or sick days - just my salary per annum). Also arranging my life around a monthly infusion, I can’t help but feel that it would be a constant reminder of the MS where I’m just getting to a point where it’s not such a huge part of my life right now.
Of course, I’ll go on it if that’s what I need to do and I’ll manage in some way. But if there’s any other option open to me, I’d prefer it.
Hi FiMarie,
If you are on Facebook and would be interested there is a group called Uk Tysabri users (Natalizumab) its a closed group you’ll have to put in a friend request to join its only for UK users and people that are on or thinking about started Tysabri and would like to know more about it the beauty about it being a closed group is that no one else only members can see your posts no one else will even know your in the group there a great bunch of people they talk about everything some of the problems they have and some off the problems and worries most would never dream off posting anywhere else.
There are a few that have been on Tysabri and have went on to other meds and can give good advice on that too.
There are 450 members now all from the UK and someone will always be able to answer any questions you have.
Mark.
HI
Blood test results today and came back positive, had a chat with my consultant and have decided to go ahead with the Tysabri.Scary thought though but i do want my quality of life back , i have 5 children to look out for and want to be able to do every day things with them, although 4 are teenagers and don’t always want me too!!.Thanks Mark for your positive comments which have been a great help and i will have a look at the Facebook page too.Onwards and upwards…
I was offered Gilenya too but decided against it, and i hope you get sorted with something that suits you Meme, i was only diagnosed in April 2013 so there is a lot to take in.
FiMarie
Hi Fimarie I’m awaiting blood results to go on tysabri, but + or - I’m gonna go with it, got to try and stop the monster, or go down fighting. Try the face book group great bunch Take care Gary
Thanks Gary, that’s great and good luck, let me know how u get on.
Take care too
Fimarie