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    You are here : Home » Get Involved » MSRC Interactive » Tysabri® User Diaries » Cheryl's Tysabri Diary

    Cheryl's Tysabri Diary

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    This is Cheryl from Michigan, USA
    Dx August 1997
    I originally was limping and becoming very fatigued.  I used to be extremely active and started noticing not being able to do hardly anything physical anymore.  I started thinking that I was "getting old" then I saw people "older" than me doing all sorts of physical things.  Then I decided that I must have a brain tumor or something so I finally went to my family physician and asked him to find out what was happening.  He ordered very many tests that all came back neg for MS except the last one - a MRI.  It came back conclusive.  At that time I went to University of Michigan for 2nd opinion and they confirmed.
    So, enough about that - here's my treatment plan:
    Originally on nothing until 2000 then started with Betaseron for 2 yrs, then Cytoxan for a couple treatments, Copaxone until Tysabri came out 1st time.  Had 1 infusion then it was pulled from the market so back on Copaxone & IV Solumedrol until Tysabri re-released. 
    Started Tysabri September 06 then received monthly infusions thru November 06.  Had a big allergic reaction, neuro tested for antibodies & took me off Tysabri (sad day).  Went back on Copaxone until Feb. 07 when neuro asked me if I wanted to try Tysabri again being pre-treated with Benadryl.  I immediately agreed and have been on it since March 07.
    Has my life totally changed since being on Tysabri - you becha!
    The best thing that I notice is my fatigue is much better.  I now work out 3 days a week. 
    I've been able to curl my toes on my right foot now for about 6 months.  I'm walking much better; do I still have to use a cane most of the time-yes BUT that's only most of the time not all the time.  I'm walking more with my walker than I have ever done before.  I can now do about an hour with the walker before I get tired.  The great thing is that I can recover pretty quickly and I'm not down & out for the remainder of the day. 
    Overall I just "feel" better.  It's very difficult to explain; I just feel great!
    I go for infusion #15 on Jan 7 and my quarterly MRI.  I'm hoping to get good results from both, I'll let ya'll know!
    Take care,

    Infusion #41
    Hope all had peaceful holidays, mine was very restful indeed.  Tysabri #41 is now  history...nothing new to report, just feeling pretty awesome.  I like having nothing new to report.  I'm anticipating starting Amaya (Fampridine-SR) as soon as it hits the streets.  I've been hearing that it should be available by end of January.  We'll see.
    Here's to a Wonderful Year with many advances in research for a cure/cause for Multiple Sclerosis.

    Infusion #40
    Infusion #40 is now history. 

    No troubles, no side effects. 

    I'm feeling wonderful and hope it continues. 

    Had appt. with neuro this time instead of Jan.  No changes in my MRI, he compared with one done in 2006...nothing different (great).  We talked about staying on Tysabri v taking a Tysabri "holiday".  He hasn't decided one way or the other yet but did indicate that if he did want me to take a "holiday" that it would only be for 3 months.  Some of the Tysabri will still be in my system over that period of time. 

    We talked about Fampridine being approved by the FDA.  He thinks that I should take it along with the Tysabri to see if it will help my walking.  Of course, it's not on the market yet (it's all about marketing)!  As soon as it hits the market we will try it.  So all in all, a very good visit!
    Have a Wonderful Holiday!

    Update November 2009
    I haven't posted since June...a lot of things going on, all good.  I'm past the 3 year mark and let me say that all of my infusions have gone extremely well and I am feeling pretty darn good. 
    My Neuro talked to me about the future of Tysabri at my last appt. in Sept.  I have another appt. in Jan. and we will talk more.  He ran the trials here in this area and I am confident that he is "on top" of the situation and he wants his patients to be as safe as possible.  I will write again after that appt. to let you know what's up.
    Until then, here's hoping all is well for all!

    Update June 2009
    I haven't updated since Sep. 08, 2008 and everything is absolutley wonderful.  I feel great, no progression.  I think that if I was going to get any other abilities back that I would have by now, but that's ok - at this time I'm still not losing anymore!  My life is totally uneventful and I like it that way.  I can take boring anytime.  I still cannot believe that I am approaching the 3 year mark!
    I know there are people out there that are still "antsy" about taking Tysabri.  I'm a firm believer that if it's your time then there's nothing you can do to stop it, so live the best you can with what you have.  If Tysabri helps you achieve that then more power to you!  I know personally Tysabri had made a huge difference.  I shudder to think what kind of shape I could possibly be in without it.
    Until next time, hope all remains well for everybody.

    Update post Tysabri infusion #15
    Had #15 on Jan. 7, all went well.  I feel great.  I've noticed that I don't seem to be feeling as "washed out" when I'm getting to end of my 4 weeks.  I've also noticed that changes in the weather still affect me but not as much. 
    Also had my quarterly MRI-get results on my next "T" appointment on Feb. 4th, I update again then. 
    I am so thankful for the pre-treatment.  If it weren't for that I wouldn't be able to take Tysabri and I wouldn't be feeling as great as I do now.
    Hope all are well.

    Update post Tysabri infusion #16 - 5th February 2008
    Had #16 today, February 5th, all went very well.  I really don't have much to report other than I still feel GREAT! 
    MRI results were good - We compared 2001 MRI with this last one and there weren't any changes.  Neuro says my brain is very well "preserved".  Don't know if I like it said that way but I get the point. 
    Newest Tysabri data indicates there are now 21,000 patients receiving Tysabri therapy worldwide, of those patients 6,300 of them have been on Tysabri therapy for at least one year.  There have been no reported cases of Progressive Multifocal Leukoencephalopathy (PML), as well as no other significant opportunistic infections or malignancies.
    Great news!
    Hope everybody does well with their treatment.

    Update post Tysabri infusion #17 - 3rd March 2008
    Went for #17 on Monday, March 3rd. Pretty uneventful, just a little tired. Still feeling good though. Actually looking forward to the change in seasons this year! I know I can't do the hot stuff, but maybe, just maybe I can do the Spring stuff? We'll see.

    Good luck to all!


    Update Post Infusions #18 and #19

    Had #18 on Monday, March 31st and #19 on Tuesday April 29th. 

    Both infusions went very well.  I have noticed though that with the last couple of infusions that I was more fatigued before the infusions and then ok afterward. 

    I've also noticed the weather is messing with me a little bit more.  Here in Michigan it can be 32 in the morning and 70 in the afternoon.  What a rollercoaster ride!  Still it's not like it used to be before Tysabri. 

    Visited my Neuro with the 19th infusion, he informed me about all the people now taking Tysabri with no new cases of PML - wahoo!
    Good luck to all!

    Update August 2008
    It's been a while since my last entry, everything has gone very well for #'s 20, 21, & 22!  Even during the summer months I've been doing pretty well.
    I was disheartened about the latest news of 2 patients diagnosed with PML.  They are both in my prayers.
    My thoughts about Tysabri:  It's pretty easy to sit back and think that the chance of getting PML is still very low, unless of course you are the one who has been diagnosed.  However, I knew the risks when I started.  I believe the benefits outweigh the risks.  If I had it to do over; I wouldn't change a thing.  For me Tysabri has definitely given me a better quality of life.  I still have "reminders" that I have MS, but they're only "reminders".  When my day is done I know that I've done everything possible to be the best that I can be and for me (at this time) it means battling this beast to the best of my ability - by taking Tysabri.  I am looking forward to my next infusion on August 18th.
    I hope I don't sound too "soap boxish" but I know how much better I feel since starting this drug. 
    Hope all remain well!

    2nd Anniversary Update - 22/09/08

    Well September 15th marked my 2nd anniversary on Tysabri! 

    I can hardly believe it has been that long. 

    Everything is going well as long as I continue to be pretreated with Benadryl.

    Although it's been 2 years of feeling mostly good, I still have "weather" issues.  They aren't nearly as severe as they were in the past, but they definitely are still there.  I am so thankful to be able to continue to take this therapy!
    Hope all is well for everybody else!

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