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Trip of my life: forgot to ask for neuro advice!?

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  • Trip of my life: forgot to ask for neuro advice!?

    Hi, I've had ms for 14 yrs and throughout that time I have mostly been morbidly obese and very unhappy - ms symptoms involved probably six attacks, optic neuritis and the like. A year ago I said I either change my life, or end it ( it was that drastic a decision). I am now 70kg lighter and still with 30kg left to lose, I am at the point where I can work my way through a bucket list which just keeps growing the more I realize I am able to participate in life...and enjoy it!

    I started tysabri six months ago and no side effects other than weird inability to sleep (though I take one antihistamine each night to combat that). Basically I am so happy with treatment largely because it allows me the freedom to forget I have ms!

    Not always a good thing it turns out....I was offered a place on a wonderful safari in Zimbabwe and organized a few days separately at Kruger nat park in South Africa. I paid for everything, thought my biggest struggle would be insurance but even that was relatively easy. Today I turned up at my gp to find out about vaccines and because of a slight cold, he sent me away with scripts and instructions to come back when my cold is better. 'does your neurologist know what vaccines you'll be having?'. Oops....I knew there was something I forgot.

    Spoke to ms nurse who manages tysabri infusions and she said that it doesn't look good as live infusions are a no no while on tysabri......but she is going to check. Meanwhile I am freaking out that my chance to go to Africa is slipping away. I have searched the net for anything about tysabri and live vaccines eg yellow fever, but can't find anything conclusive. Found this site and hoped there could be someone who might have had some experience travelling the world while on immunosuppressant therapy like tysabri, or any of the main ms drugs I expect....and needing vaccinations? Anyone who might be able to offer me some hope I would really appreciate it.... ( I know nurse will get back to me but I don't know if I can wait that long with out any hope!)

    Thx to anyone who read this far (please excuse my babble)

  • #2
    Wish I had knowledge on this to share, which I don't, but I just had to offer you a major thumbs-up on the way you've tackled this challenge and made a more active life for yourself. To that thumb I'll add fingers-crossed for good news from the docs that will get you on your way to Africa.


    • #3
      Great to hear from you, Chants, and congrats on the fabulous weight loss--keep it up! First off I would call your country's Tysabri patient assistance line. They might have some good advice.

      The CDC in the US doesn't list any must-get vaccinations, although Zimbabwe may require them depending on where you live.

      That said, South Africa may be a different story. Yellow fever is required if you travel through a country that is at risk UNLESS you get a medical waiver:

      Fortunately Zimbabwe does not appear to be on that list.

      Yellow fever is one I would avoid even if you were not taking Tysabri. A recent study found that it increased the risk of relapse in us MSers. I suggest DEET instead and getting indoors when dusk approaches.

      Here is the National MS Society's take on vaccines and yellow fever.

      I don't think your trip will be derailed, Chants, so I expect to see you post pics here in the forum after your safari! It is one I highly recommend for MSers!
      Dave Bexfield


      • #4

        Thanks so much both of you for your responses. It never occurred to me that there would be a patient assistance number until you suggested it David : I thought I just dependent on my ms nurse and essentially powerless to get answers without her. Unfortunately, I read this after the phoneline had closed so will have to wait until tomorrow to speak to someone who is hopefully a little more positive than the ms nurse I spoke with yesterday!

        I read quite a bit today about yellow fever - the tour guide said he had a couple of people stopped in sth africa in transit from Zimbabwe despite it not being on the list so I will definitely need a letter from neurologist to avoid being put in detention or whatever they do with a naughty tourist...

        Anyway, thanks again. Though I still dont have any conclusive info either way, I feel a little more calm now. Need to regain focus on what is important, and at the moment that is getting to Africa!

        Thanks again,
        Chants (in Australia)


        • #5

          Hiya, just an update: spent the last half hour on phone to patient assistance and they were oh so helpful! I can safely have twinrix vaccine, and take malaria oral drugs. They have no data about yellow fever nor about Typhin Vi vaccines other than to say they are live so on paper pose more risk. As I don't absolutely have to have a yellow fever vaccine, I will avoid that, though the other typhoid one I can research other options and speak to my gp. I am once again excited by the prospect of Africa and will be sure to post pictures!

          Thanks again! I am so very glad I found this forum!


          • #6
            I had yellow fever vaccine while on Tysabri....

            Chants : So...I have done a lot of travel to some pretty remote and exotic areas of the world, taking all recommended vaccines e.g. yellow fever, typhoid (and many others) while on immune suppressing MS drugs.

            I went to the Amazon a couple of years ago - and Yellow fever vaccine was pretty much required for me to go on that trip. Was on Tysabri at the time. My neuro was not exactly excited about the idea of my taking a live virus vaccine....but he also knew I understood the risks I was taking and that ultimately it was my decision to make.

            Some nations will not permit you to enter their country if they know you have been to an area of the world where yellow fever is present - unless you have the yellow fever vaccine, and have documentation that it was taken prior to your visiting said area. So...take that into account.

            This sort of thing is a highly personal decision. You have to weigh the risk of taking the vaccine against the risk of contracting the disease the vaccine designed to protect you from...and from there decide which risk is greater. All of that of course must be weighed against the reason you are traveling in the first place - to check off items on your bucket list. If you want zero risk, stay at home!

            Yes, you an can get a travel exception for yellow fever under certain circumstances which you would probably qualify for. so doing, you are putting yourself at risk of yellow fever which is potentially fatal. Of course, a live virus vaccine while on Tysabri can put you at risk for other things.