Multiple Sclerosis Resource Centre
  • Home
  • About MS
  • MSRC Services
  • Get Involved
  • MS Research News
  • MSRC Groups
  • Useful Resources
  • Welcome To Josephs Court, MS Centre Of Excellence
  • Advertising
  • E-Newsletter
  • Contact Us
  • Cookie Policy
  • Investor in People
    You are here : Home » Get Involved » MSRC Interactive » Tysabri® User Diaries » Tariq's Tysabri Diary

    Tariq's Tysabri Diary

    A A A
    [Print this page]

    Share |


    Name: Tariq

    Age: 37

    Occupation: Finance Commodities and financial planning

    While on a business trip in Chicago Jan 2007 in frigid temperatures I was having tingling and a little weakness in my right leg. My Father who is a Dr. himself and a director of medicine was very helpful. We thought it might be a circulation issue.

    As soon as I came back from my trip I had severe weakness and my foot was not going where my brain was telling it to.  No waiting straight to the Emergency Department and while in MRI machine lost feeling in left leg and torso area. Was very scary between the possible outcomes Lupus, spinal cancer, Lyme, or MS. After a spinal tap and review of MRI was concluded has MS.

    Was very lucky to get one of the best MS specialists in my area and after 1 week in hospital  and 1 week in rehab and a 5 day dose of steroids I was walking again. Went on Betasaron immediately my side effects were really not bad at all but within 6 months had another relapse which wasn’t as bad and was recovering after 3 days of steroids. We then decided to do a double dose of betasaron since I had new lesions and  all was great until 6 months later. Nothing physical at all but after my regular scheduled MRI they found 4 new enhanced lesions in the brain. Thankfully no symptoms but after learning and educating myself on MS it seems logical; to go with Tysarbi, we want to do everything possible to stop the lesions.

    I have gone through extensive tests to make sure I’m prepared for my first infusion. Every blood test on the planet from platelets to how strong my immune system is. A pneumonia vaccine, TB test, and basically everything else to get a reading of my baseline. I feel very confident on how Tysabri works and am going to do liver tests within 2 weeks to monitor that and even went to skin Dr. to watch any moles I have. I do feel confident on my infusion which I’m scheduled for April 8th and will share my thoughts on the infusion with the Doctors and how I basically feel throughout this process.

    Tariq

    July 3rd - Tysabri 3rd and 4th infusion

    Things have been going very well. I guess so well I forgot to write a diary after the 3rd infusion!

    Nothing unusual about the 3rd infusion last month except for the fact that I get quite bored sitting there.

    So I just received the 4th infusion on July 3rd, why I did that before a holiday weekend I’m not sure but the infusions are quite easy now.

    I have to say I have been feeling great over the last couple of months no side effect at all and have been quite active. Besides starting a new business and finishing remodeling my whole house I have to say I don’t really feel any effects of MS or Tysabri.

    I am looking forward to my next MRI in September to hopefully show no new lesions

    The only thing I can say after the 4th infusion was that I was quite tired but I think that has more to do with enjoying the 4th of July than anything else.

    I am again looking forward to Biogen and their earnings announcement in a couple of weeks to see how many new patients are on Tysabri. I have read some stuff on the skin cancer of 2 patients and after speaking to my Dr and Biogen they can’t say that this is an effect of Tysabri. 1 of the patients had a history of skin cancer so if that’s the case with anyone I would watch it more carefully.

    My liver levels are normal and glad to see that after all the whoopla of the liver warnings. Honestly I feel pretty good I hope everyone else is seeing the results that I am.

    Tariq

    2nd Infusion May 12th
    My second infusion date has come and I have to say I was looking forward to it. I am glad that I’m done with the Betasaron. For over a year never missed one dose but it always weighed on me. I came down with a typical cold a week before my infusion was due which made me a little nervous. I had a temperature and sore throat with a lot of sneezing. Thankfully the temperature went down before the infusion. I knew if it had lasted I would have to postpone the infusion.  

    Once at the infusion center, again the people were so nice and comforting. Started with the pre meds a couple of Tylenol and a zyrtec. The zyrtec made me quite drowsy after my first infusion so I was prepared this time a healthy breakfast and a cup of coffee.  The infusion was easy again and the blood pressure and heart rate were great. Was pretty boring and by the end of the hours observation I was starting to get restless. No side effects afterwards, headache or anything. I do feel a little in a funk but I attribute all of that to everything else that’s going on in my life. Happy to say I don’t feel any MS effects at all and really feel quite normal. I was able in the last month to pass a test in my field and doing major work on my house and even attend 2 baseball games.  

    I’m thrilled to see no new case of PML and Biogen stating in their quarterly numbers that they feel on track to have 100k patients on Tysarbi by 2010. I know there is a new drug in a phase III trial by Novaritis an oral drug. I’ve spoken to a few Dr’s about this and it looks promising but have been told that Tysabri, so far, has the best numbers out there to reduce relapses and more importantly new enhancing lesions. While an oral drug sounds exciting I wouldn’t even think of trying it as long as the numbers and so far the results for me are better. If there is anyone on the fence of going on Tysabri I can honestly say I’m extremely happy with the zero side effects and the once a month infusion.

    Tariq

    First Infusion Thursday April 10th
    So the day had finally come. I spent the last 2 weeks doing all kind of blood work to make sure everything else was good. Was very exciting to hear everything from cholesterol levels, sugar, liver, immune systems, lymph nodes, HIV, TB, blood pressure, and heart rate came back good.  A little frustrating that I’m in good health besides MS but you have to look at the positives. So now to the preparation, took my 3 day of IV steroids and stopped taking the Betasaron 4 weeks ago. Finally ready for the infusion.

    When I got there to the infusion center it was a cancer center which really makes you think I could be in a much worse situation. The center was so professional and well organized it was uplifting. I got there 2 hours early thinking I would be filling out paperwork forever but to my surprise everything was in order. I had called in advance to make sure the Tysabri was there and found out they only mix it when you get there or call that day which saved me waiting around. I was immediately taken to the chair and vitals were taken, heart rate and BP were a little elevated but within range. I was then given the pre medication two Tylenol and a sister of Claritin (forget the name) and given a run down of questions of medical history and current condition plus all information on Tysabri while I patiently waited a half hour for them to get into my system. Then one more set of vitals and heart rate and BP were normal and the infusion began.

    Honestly I was extremely bored, kind of at peace with the decision we had made. With Dad being a doctor and speaking with numerous MS Dr’s I know this was the right decision. About half way through the infusion my only concern was where was the stock market and can I use my cell phone in here. After the infusion was over had to be observed for an hour and spent that hour debating where to have dinner. After 1 hour one last set of vitals and all normal and was sent on my way.

    It’s now 24 hours later and I’m home no side effects of any kind. I am keeping a watchful eye for and discoloration in my urine or yellowness in my skin or whites of my eyes. This basically to watch my liver and I have liver tests scheduled  in 2 weeks and 6 weeks from 1st infusion. Tysabri has a warning about the liver problems it has come into but every drug could have an issue with your liver. Besides that I know there are 25,000 people on Tysabri since it was reintroduced and no new case of PML. Also have learned 2 of the people who got PML were on other immune suppressant drugs (Avonex) and some other drugs also. I am anxiously waiting to hear from Biogen how many patients are on it now especially since the PML case that were first reported happened at the 2 year mark and we are just about there now since its reintroduction. I have very little fear of PML and am more excited about the results that Tysarbi has shown reduction in relapses and more importantly reduction of new lesions.

    I have to say the infusion center and more importantly the professionalism of everyone there was far more than I would have ever expected. Maybe because it was a cancer center for infusions but I would highly recommend this infusion center if you are in the NY area rather than a Dr’s office. Especially since if you have any kind of side effects there are Dr’s there to immediately evaluate and treat. I will give an update before my second infusion or if any thing changes.

    Tariq

    Related Items
    Ade's Tysabri Diary
    Amy Kristine's Tysabri Diary
    Annaoc's Tysabri Diary
    Cheryl's Tysabri Diary
    Chris Dawson's Tysabri Diary
    Christine B's Tysabri Diary
    Christine's Tysabri Diary
    Claire's Tysabri Diary
    Dave Parker
    David's Tysabri Diary
    Deborah Penny's Tysabri Diary
    Diane's Tysabri Diary
    Donna T's Tysabri Diary
    Eddie Clark's Tysabri Diary
    Emma's Tysabri Diary
    Ewizabeth's Tysabri Diary
    Fabiola's Tysabri Diary
    Georgina's Tysabri Diary
    Jan's Tysabri Diary
    Jayne's Tysabri Diary
    Jill's Tysabri Diary
    John W's Tysabri Diary
    Kara's Tysabri Diary
    Karen's Tysabri Diary
    Kate's Tysabri Diary
    Kirsty's Tysabri Diary
    Krissie's Tysabri Diary
    Laura's Tysabri Diary
    Lauren's Tysabri Diary
    Lisa's Tysabri Diary
    Mandy's Tysabri Diary
    Martha Rogers' Tysabri Diary
    Melissa's Tysabri Diary
    Michelle's Tysabri Diary
    Natasha's Tysabri Diary
    Neil’s Tysabri Diary
    Nicky's Tysabri Diary
    Nutty's Tysabri Diary
    Patti's Tysabri Diary
    Paula's Tysabri Diary
    Richard's Tysabri Diary
    Richard's Tysabri Diary
    Sarah P's Tysabri Diary
    Sarah's Tysabri Diary
    Shane's Tysabri Diary
    Simon's Tysabri Diary
    Sonya's Tysabri Diary
    Stuart S's Tysabri Diary
    Sue Lawrence's Tysabri Diary
    Tina's Tysabri Diary
    Tony's Tysabri Diary


    Did you find this information useful? Would you like to comment on this page? Let us know what you think! We welcome all comments and feedback on any aspect of our website - please click here to contact us.