Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Wednesday, February 20, 2008


My Tysabri Diary...

I had 18th Tysabri infusion today (why is it that each of my Tysabri infusions lately have been when it's pouring rain outside? Oh yeah, it's winter- heehee)..

I learned that my small infusion center currently has 10 Tysabri patients that they are infusing, and to the best of the nurses' recollections, none of them have had a relapse since starting Tysabri.
My infusion, as usual (thank goodness) was uneventful and my wonderful infusion nurse got me on the first try (Lordy, I love it when I don't have it to endure multiple sticks).

But mainly, what I wanted to pass on was that I had the opportunity to speak with a young MS patient and her mother that had stopped by the infusion center to say hi to everyone as they were on their way for the young girl to have her six-month neuro appointment. When the young girl and her mother found out that I was there having my 18th Tysabri infusion, they asked the infusion nurses if I could possibly speak with them for a while (this is the young girl that I previously told all of you about that had two (I think) previous Tysabri infusions and was feeling kind of depressed as she had not seen any improvements in her condition-that was when I asked my infusion nurse to pass on a message of hope to her when she saw her next).

The young girl (I believe she said that she was only 19) was very shy, but her mother wasn't. Her mother told me that even though her daughter had been diagnosed with MS at age 16, had tried all of the ABCRs, with the exception of Rebif, just continued to get worse and ultimately, wound up in a wheelchair two years ago. Her mother also said that her daughter had various symptoms of MS throughout the years, but none of them had made the connection that it was MS, until she got the final diagnosis (this is very common among MS patients as they look back prior to their diagnosis and can see the various symptoms that they were trying to attribute to other circumstances).


Are you ready for this? Her mother told me that her daughter is now able to take six steps with a walker, and is determined to get her driver's license! Also, her tremors have all but disappeared, and the strength is returning to her hands where she can almost write her name again. Just her balance has not made any improvement, yet. They are both ecstatic about Tysabri, and feel so blessed that they are able to have this medication available to treat her MS.

The young girl told me that she has had no side effects whatsoever from Tysabri, other than a slight headache that lasts the day of her infusion. They told me the name of her neurologist, and I knew who she was (her doctor happens to be my neurologist's partner).
And the best part was the mother told me that two of her daughter's legions on her brain have all but disappeared! Her daughter's face lit up like a light bulb, she was so happy!

I mentioned to them both that because she is still young, her body has a fantastic opportunity to heal itself (with the help of Tysabri keeping most of the inflammatory cells from attacking her central nervous system), and with her positive attitude and future Tysabri infusions, anything can happen! But I reminded them that Tysabri is not a cure for MS...it was designed to try and prevent further relapses and their accumulating disabilities, and to slow the disease process down. What the daughter is experiencing is icing on the cake (improvements). And for some patients (like me), Tysabri is able to keep their MS stable (I have not had a relapse in over a year since restarting Tysabri in October 2006).

I also told them about my experiences with Tysabri after my very first infusion ever in early 2005.
We talked about other things regarding Tysabri/MS/PML/the ABCRs, etc., and just before they left, her mother asked me how long someone can take Tysabri.... I said, "Well, I am on my 18th infusion, and so far so good, so I don't see any reason why your daughter would ever have to stop Tysabri infusions unless she developed neutralizing antibodies to Tysabri, unless she became highly allergic to it, suffered severe side effects from it, or until a superior MS medication came along and/or a cure for MS was found, but I am not a doctor and you should double check with Dr. X.". They both threw their hands up in the air and yelled "Yes! Thank you God!", and then they hugged each other (you would not believe the smile on my face when that happened).

Well, it's time for pizza and mudslides. I hope everyone has a wonderful evening....All my best,


((((hugs))))

Love, Lauren :)

12 Comments:

  • At 5:04 AM, Anonymous Anonymous said…

    What an uplifting account of your conversations! Hope you enjoyed your mudslide. As they used to introject in the 60s, "keep the faith, Baby!"

    Deb

     
  • At 12:28 PM, Anonymous Anonymous said…

    Lauren,sweetie.
    You are quick to point out other's accomplishment's. But, I don't feel you give enough credit to the one inspiration to lot's of other people. YOU!
    Your advice and praise to other's is grand, but I think you need to give yourself some credit also. You deserve it. So do me a favor and pat yourself on the back, supergirl.
    And please do all you can to take care of yourself. I myself, would be devastated if the world, lost a beautiful soul, as yourself. Take care sweetie.

     
  • At 1:43 PM, Blogger Cyndee said…

    Hi Lauren,

    I am really interested in this 21 days infusion information. I'm going to my Neuro. nex week and want to go fully loaded with all the info I can get. I looked at the website on your page, and couldn't find anything other that every 4 weeks. Please email me.
    Last month I was off my Tysabri schedule by one week, (because of insurance), and this month I'm off another week. That's 2 wks off my normal schedule. I am back walking with my cane (don't want to look like a drunk), no energy, right hand trembling.
    Lots of stuff coming back. I can't believe that Tysabri is still working in my system if after 10-12 days, I just start going down hill! I told my doctor that I'd be a ginny pig for the drug company if I can have it more often! He just laughed!
    I love that you were such great help to that girl and her mother. I have also been spreading the news, give lots of people you blog address and have gone with someone new to have our infusions together.
    Love You,
    Cydee

     
  • At 4:50 PM, Blogger Lauren said…

    Hi Deb!

    Right on, and far out... I DID enjoy the mudslides, soooooo yummy!

    Take care now, (((hugs)))

    Lauren :)

     
  • At 4:58 PM, Blogger Lauren said…

    Oh my goodness "anonymous", thank you so much for your kind comments.

    Please do not be devastated if anything should happen to me... when it is my time to go, I am ready. Just rejoice and be glad that I'll be in a better place when my time comes.

    Again, thank you so very much for your kind and encouraging comments. I am just very happy to help someone else if I can.

    Have a beautiful weekend!

    All my best,

    Lauren :)

     
  • At 5:06 PM, Blogger Lauren said…

    Hi Cyndee!

    Check your e-mails...when you see Dr. B. next week, tell them I said hi!

    I'm so sorry that you were having insurance problems that prevented you from receiving Tysabri last month, that so sux! Grrrrrrrrrrr

    How neat that you now have someone new to go with you to your infusions... sure passes the time, huh?

    Take care girlfriend, and I'll talk to you soon.

    All my best, Lauren :)

     
  • At 5:42 AM, Blogger Jenborg said…

    Hi Lauren, thanks for commenting on my site. i am sure the girl you gave me the information for, will apreciate your words; she actually wants desperately to go on it, but in australia it is not yet available. that's why i was saying how lucky i was. which i very much am - there are only ten of us in australia! keep in touch. can i put your blog address as a link on mine?

     
  • At 1:51 PM, Blogger Lauren said…

    Hi Jen!

    If I'm not mistaken, Tysabri should be available on your PBS by April 1st, as I also follow the Australian MS forums.

    And to answer your questio YES! You can definitely post my blog address on your blog as a link.

    Don't be such a stranger, okey-dokey artichokey? Heehee

    All my best, Lauren :)

     
  • At 4:14 PM, Anonymous Anonymous said…

    Hi Lauren.

    How long does it take for tysabri to get out of your system? I had my first infusion this week and I have the worst headache that will not stop even with vicodin. Plus my teeth are real sensitive now and I haven't been well ever since. I had to stay in bed the first 2 days.

     
  • At 5:40 PM, Blogger Lauren said…

    Oh my goodness anonymous, I'm so sorry to hear that you're not feeling well after your Tysabri infusion..., you ask: "How long does it take for tysabri to get out of your system?"

    It is my understanding that Tysabri stays in your system for approximately 2 months before it is completely gone (don't quote me though, as I am not a doctor).

    But there are many reasons why you might be feeling so badly after your infusion. I have 3 questions for you:

    Are you "medications sensitive"? If so, your body might just need one or two infusions for you to get used to the medication, and it wil hopefully get much better with each infusion.

    Were you on Tysabri before it was removed from the market? If yes, you might have built up antibodies to Tysabri, but only your neurologist will know for sure.

    Most importantly: Were you pre-treated with an antihistamine such as Benadryl (30 minute drip) or Claritin (OTC tablet taken orally approximately 2 hours before your infusion) prior to your infusion? I take a Claritin in the morning with my coffee before I even leave for my infusion. If you don't pretreat at all, I would highly suggest that you pretreat with same as it will greatly reduce any side effects that you are having... also, your infusion drip might have been going way too fast as this will also cause you to have side effects from any medication that is infused into your body... they need to slow it down.

    I would strongly suggest that you discuss the above with your neurologist so that he/she can make the appropriate recommendations prior to your next infusion, and make your infusion center aware of the above.

    I know a girl that was soooooo medication sensitive, she almost gave up on Tysabri after her third infusion, but believe it or not, by her fourth infusion, she was having no side effects at all, and can't wait for next infusions!-go figure.

    If your next infusion does not go well again even with pre-treating for 30 minutes with Benadryl or Claritin @ slowing the drip down, perhaps Tysabri is not the drug for you... but I pray this is not the case and that Tysabri can ultimately help you fight your MS.

    Please feel better soon, and please keep me updated as to your progress, you can send me an e-mail if you like. My address is LGLBGL2003@aol.com

    All my best and many supportive hugs to you dearheart,

    Lauren

     
  • At 7:10 PM, Anonymous Anonymous said…

    Thank you Lauren! You have given me hope! My neurologist has not called me bad all week and the infusion center doctor just told me to take vicodin. I don't think it mixes well.

    I don't believe I was pretreated with benadryl as I told the infusion doctor I take benadryl everynight and often take readi-tab claritan in am. I happened to have taken some that morning and advised him, so I think it was skipped. I had taken a vicodin before I had infusion b/c i was having so much pain and i usually take at that hour anyway. This has been a real tough week. I am real anxious for the liver tests next week as that was a big problem for me with avonex.
    Thank you very much for your extra kind words! I really appreciate it and the hope you have now given me!

    p.s. I am med sensitive in weird ways as meds often have opposite effect they are supposed to have.

     
  • At 3:35 AM, Blogger mugzy said…

    Awesome Blog I go for my 20th infusion of Tysabri this morning and after the last two i dont know if its working anymore but the doc told me to give it another shot...

     

Post a Comment

Links to this post:

Create a Link

<< Home