Tysabri

[hreynolds29]

Lots going on

Started the Acthar Tuesday (11/19/13) night to get rid of my 95% of numbness in my body, day 2 haven't noticed too much of a change.

Today (11/21/2013) had an MRI done, got it on a disc and took it straight up to my docs office and we sat and reviewed it. Looks like my MS, remind you I just got diagnosed August this year with symptoms starting in June of this year, has become aggressive and my MRI showed a lot of signals in my spinal cord. So now he wants to take me off of the Copaxone, I have been on for a month and a half, and put me on Tysabri.  I started the application process and now waiting for them to call me and get the ball rolling on that. Now he mentioned that this is the top of the line MS medication so that does give me some relief.

P.S. I did test negetive for the JC Virus.

Any thoughts, experiences etc on this Tysabri??!!

[SarahL2491]

I'm coming up on 2 yrs on Tysabri and am JC+ from the start.

I had digestive issues but was put on steroids for  5 days a week (the week of infusion) and prilosec and am doing fine.  The 2 hrs is nothing, considering you don't have to think about it for another 28 days!

[hreynolds29]

That is fantastic to hear!! I hope I have the same results, thank you all for your support and input!

[kwarendorf]

Glad to hear that the Valtrex and TYsabri will play nicely together :-)

As to what side effects I had with Tysabri, in a word, none! I had absolutely zero side effects from Tysabri.

Kyle

[hreynolds29]

Well just heard back from my docs office and they said the rep checked a couple diff resources and indicates NO issue taking Tysabri and having HSV2 so that is great news for me!!!

Now what side effects have you all experienced on this medication?

[hreynolds29]

Great find, I will read!! Thanks!

Just don't want the damn HSV2 to hinder my MS treatments. so frustrating!!

As long as it doesn't cause more of those outbreaks, I will be totally on board with the Tysabri!!  

[hreynolds29]

I could have sworn that I read that Tysabri was an immunosuppressant

[kwarendorf]

This is an attempt, by an MD, to explain the difference between immunomodulators and immunosuppressants.

http://www.medscape.org/viewarticle/734015_transcript

[hreynolds29]

Okay thanks for that info!!

I just sent my docs nurse an email about it and she contacted the Tysabri rep and we are waiting to hear back from her.

[kwarendorf]

For me it's semantics; immunosuppressant v. immunomodulator :-)

Technically Tysabri is an immunomodulator. It messes with specific elements in your immune system, but doesn't kill things. Immunosuppressants work by killing things :-)

I would definitely mention the Valtrex to the Neurologist and the Tysabri to the doc who prescribed the Valtrex.

Kyle

[hreynolds29]

I guess he wants to put me on it because of how quick my MRI showed my MS is progressing considering my symptoms just started in June, got diagnosed in August and my first MRI in July showed one lesion on my lower spinal cord and a few on my brain.

I guess the major changes from July to now is his concern.

Yes he said I will have to be tested for the JC Virus every 6 months.

Here is another concern of mine. I am HSV2 positive, genital herpes, and I take the antiviral medication Valtrex for it, I'm wondering now if that is going to be an issue because Tysabri is an immune suppressant or whatever, sorry still learning the verbiage lol. I hope it wont because I do take Valtrex daily :(

[kwarendorf]

I was on Tysabri for 20 months. I had no issues at all and loved the fact that it was only once a month.

Make sure that you ask about how they will monitor you JCV status in order to manage your PML risk. After infusion # 18 I converted to JCV +, so I stopped using Tysabri. My doc doesn't like taking chances :-)

Kyle

[Guitar_grrrl]

Ditto what Laura has to say.  I'm coming up on my 4 year anniversary of taking Tysabri, and I have no regrets.  I, too, am JCV negative, and I plan on taking this stuff until I can't for some reason.

So Easy!!