Hi
i was told i had a very aggressive ms and that im a very ill man. I have the choice between avonec and tysabri. Which is better?
im 18 and this isnt what i wanted to hear.
I have nothing to live for anymore lost my job i always wanted and pretty much was told im going to be disabled
Avonex is safer than Tysabri.
Tysabri is more effective than Avonex.
Which one does your neurologist recommend? He/she will have the best picture of how your MS is behaving, and what is the best balance of benefits and risks for you. Getting clear guidance from your neurologist is key. If you haven’t got a clear steer on which one he/she recommends, ask again.
I am very sorry that you have all this on your plate. It is tough stuff to deal with.
Alison
(I used to be on Avonex, now I’m on Tysabri because my MS changed up a gear.)
Hi alison,
the neurologist said i need tysabri as i fit the criteria
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Dear Tyler
I recommend Tysabri all the way! I’ve was very active when I started but I’ve been on it for 3 years now and haven’t had a single relapse.
I would always rather be on it than not even if I had a JC positive blood result.
I’m sorry you’re sounding so low. You’re sooo young to have all this to face, but Tysabri is the best start with DMDs and, give it a few months, you should get your fight back!
Very best wishes
Emma x
This is my story too! I’m still undecided about Tysabri because I’m JC positive but if you aren’t then go for it, my mate was your age when he was diagnosed and was put on tysabri and hasn’t had a relapse in 6 years
Hi Tyler,
Sorry to hesr the army couldnt keep you on. Life really is a b***h some times. It takes a while to adjust, re adjust and re adjust again.im still trying to adjust. Told job centre plys today i did not want benefits, wanted to work. I used to be in REME, coming out of the forces is a hard adjustment any way. I came iut before i was ill. But am unconventional in my life, now find having to be a disabled, b tied to an address or hospital impossible. I have the same drug choice as you but have put off choicing. Infact ran away to asia to learn to mahout elephants, my dream, thought id do it whilst i still could.
Anyway, sorry i cant help, and that its all so bad, hang in there, keep hoping for a cure, big hugs,
Sp
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Tyler, my heart goes out to you.
My husband was told by his neurologist yesterday his MS is agressive. He was diagnosed earlier this year and has been on Avonex for 5 months but has relapsed while taking it. The next suggested medication is Tysabri. We have only had just over 24 hours to take this in.
We have read as much information about it as possible. Have you been given an information booklet from your MS nurse or Neurologist? We also had 3 leaflets about JC virus. One explaining what it is, one about JC positive and risks and one about JC negative. Make sure you get all of this information.
My husband’s MS nurse and Neuro both recommend Tysabri. Nobody can tell you what decision to make but try and get as much info as possible. There are some groups on Facebook that you can join to read about the experiences of others. Like the forums on here it may help to learn about ‘real life’ people with MS and who may be taking Tysabri.
Although I’ve only had a day to look into Tysabri the majority of what I have read seems to be positive. Lots of people reporting good results and stabilisation of the condition.
With regards to how you are feeling - has your MS nurse suggested you seeing a counsellor? My husband dismissed this idea initially but after our news yesterday he now knows he needs to speak to someone to talk through everything he has going on in his head. I know counselling isn’t everyone’s cup of tea, but again just an idea.
Finally - have you heard of Hyperbaric oxygen treatment? I haven’t seen much about it on here. We found about it recently. It’s basically a treatment for MS patients (also cancer patients and sports injuries) where you breath in pure oxygen in a decompression chamber. A large number of MS patients report an improvement in how they feel. There is quite a lot of information about it online. There are around 60 MS centres around the country that offer the oxygen treatment. This treatment isn’t NHS approved and you have to pay for it yourself and this is why a lot of MS nurses don’t mention anything about it.
Here is the website link for MS centres around the country. You can look up your nearest centre and read about the oxygen treatment.
http://www.msntc.org.uk/centresearch.php
Good luck. x
There’s a much greater chance of stoppping it with Tysabri. It’s a matter of weighing up the risks of a high chance of relapses on Avonex or low on Tysabri.
There is also Lemtrada which is also in the highly effective group of Disease Modifying Treatments (DMTs) with Tysabri. (it might even stop the MS not, repair any damage, but stop it.) Its licenced as a first line drug and I would ask about it in your case.
OK. So your neurologist sees your MS as being aggressive (as you said) and so wants to reach for the big guns now in terms of medication. It’s hard for you to hear that your MS is so active so early, and I am sorry that the news isn’t better.
The decision on medication is yours to make. For what it’s worth, I tend to go with the neurologist’s advice unless I had a better idea. I’m only half-joking - these people are trying hard to help, and they are worth listening to.
Alison
Hi Ty,
Sorry for your news. I’ve PM you. Andy
Hi
Personally, I wish I’d had something like Tysabri available when I was first diagnosed, as I’m sure I’d have avoided some nasty relapses as a result. But, as I’m sure you know, it also has some higher risk. It’s a tough to make, especially when you’ve already got enough on your plate to deal with.
And I want to say again, as I’ve said before on one or two of your previous posts, that your life is not over. Life as you’ve known it may be very different, but you have definitely not reached the end of your life. I was the same as you when I was diagnosed at 25. I know full well that it may take a long time to come to terms with having MS, and you need to kick and scream as much as you need to. But there can be light at the end of the tunnel, and life can still be possible (I think I said on one of your posts before that I’m going to be learning to fly - well I’m currently half way through my scholarship, and it’s fantastic! It’s pretty intense at times, and can be stressful. But I’m so glad I’m doing it. If you want to know who the scholarship’s with, send me a message).
Dan
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nice one badger. pleased to hear that news re your mate.