Tysabri Round 5 – IVIG – New MS Drug?

Yesterday I had my 5th Tysabri infusion. Before they hooked me up I saw my neurologist as always. Everything seemed fine with me so I asked him a question. I wanted to know if what everyone says about the rebound effect of Tysabri is true. For those of you who do not know, they say that if you stop Tysabri then in about 4 months you will undergo renewed disease activity, or in simpler terms, you will relapse hard! The disease seems to become about three times more active. “They” say the shorter the amount of time you have been on Tysabri, the worse your MS was before you started it, and the better Tysabri has helped you, the worse you will rebound after you stop Tysabri. So I asked him if this was true and he said definitely, every bit of it. I then asked if that meant I was stuck on Tysabri indefinitely since I was three for three on the above factors. He said “no, hell no“.

He mentioned switching to another therapy if that time came and I mentioned that I have read that it doesn’t seem that switching to any treatment after stopping Tysabri prevents the rebound. He then told me about a new MS treatment they are working on, I can not recall the name nor can I find it online, this treatment is also given via IV but not as “often” as Tysabri. I forge the name, I am so mad at myself, but it’s not FDA approved yet so it’s not Novantrone. I want to find out what this is because this could change the course of my life drastically so if you have heard of it please let me know below!

He also asked how the Acthar (ACTH) is working and I told him well and when he asked about the last round I did I told him that it did not seem to be working as well as usual but that is probably because it’s getting hot again. He brought up IVIG (Intravenous immunoglobulin) and how he thought it would be worth a try. I have not got familiar with IVIG yet because no one was ever willing to give me anything but steroids before so I can’t exactly say what it is yet. Nonetheless, I said “let’s do it” so he wrote the prescription and told me it’s a 5 hour IV but they would send someone to my house to set me up with an IV at home. 5 hours sucks but at least I get to do it at home and it will be worth it if it helps!

So I am going to try to find out more about this mystery IV drug and will post about it if and when I find out about it. I will also talk about IVIG when I know more!

17 thoughts on “Tysabri Round 5 – IVIG – New MS Drug?

  • May 9, 2013 at 9:55 pm
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    Matt: I had the IVIG and it was 3 times over 3 days, about 2 hours each time. The stuff is pure IgG and is way expensive but IgG is truly a healer. Given as a one-time injection or in IV form, it makes a person very immune to a lot of things. To get the amount you need (as I got) it takes collecting blood from thousands of people and the IgG is separated out, tested and purified and does what the steroids do ONLY BETTER. My insurance does not want to approve it now… for MS, as it is costly and not on the list of MS drugs! That sucks because it really was very effective in calming down the system. It is a powerful anti-inflammatory. I hope it works well for you! Just think of the 5,000 people who gave blood just to make your IV! Isn't this MS a never-ending mystery?
    Craig.

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  • May 10, 2013 at 12:52 am
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    Interesting, I am kind of getting it, very interesting. I look forward to seeing how it effects me, I hope really well! Thank you for the knowledge!

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  • May 11, 2013 at 10:45 pm
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    I am curious. . . Why you are going to get IVIG? Janice had it during a relapse and we didn't notice any difference.

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  • May 12, 2013 at 5:46 am
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    You should know best, everyone is different, no harm can come from trying :p

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  • May 13, 2013 at 4:44 am
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    No seriously I am really curious what you are trying to accomplish with it. You are already on Tysabri to stop from relapsing right? I am not saying there is harm or not from trying it but I am wondering what results you expect to get.

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  • May 13, 2013 at 3:01 pm
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    doc wants to see if it will help calm the symptoms I still have with it since the heat is messing with me more than Acthar seems to be able to help.

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  • May 13, 2013 at 10:51 pm
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    Hi,

    I'm not sure but think you (or your doc) might mean this one: http://en.wikipedia.org/wiki/Alemtuzumab It's a monoclonal antibody that acts similar as Natalizumab but it seems to be sufficient to have infusions on a yearly basis.
    Alex

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  • May 14, 2013 at 12:28 am
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    Yeah that sounds like it I just dont remember the Leukemia bit but maybe he did not mention it? Thanks though! As I said, I THINK that is most likely it but I will wait and find out before I conclude that haha

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  • June 16, 2013 at 4:37 pm
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    i start my first round next week, a little scared because everything else has failed. Any tips, is the first round really as bad as everyone making it out to be ?

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  • June 16, 2013 at 7:15 pm
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    Good! Nothing worked for me either. No, it's not. The WORST part was my doctor gave me IV Benadryl before the Tysabri (just in case) and it made me sleepy….

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  • December 22, 2013 at 9:52 pm
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    I think the drug you were thinking of is called Lexapro. I, too, am on Tysabri. I know a girl who was on Lexapro–it helped and then didn't. Lexapro works something like this: You're infused for 5 days straight, and then you need infusions only 2 times more per calendar year. It sounds promising, but I do have to say that it ended up not working for my friend, and because it is such a potent drug, she had to get off ALL meds and then had to get a plasma replacement or something similar.

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    • July 19, 2014 at 5:26 pm
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      I think you mean Lemtrada Not Lexapro which is an antidepressant

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  • December 22, 2013 at 10:35 pm
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    Hmmm, the process sounds right but the name… not so much. Funny, I remembered it a while ago but have since forgot again. Oh well, if the time comes my doctor knows it!

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    • July 19, 2014 at 6:23 pm
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      Yes, it's Lemtrada, originally called Campath but they are trying to get it approved for use in MS under the name Lemtrada.

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