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

    Lisa's Tysabri Diary

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    Lisa

    Lisa: Age 41.

    Diagnosed: August 2008.

    Previous Medications:
    Copaxone 2008-2012 (March.) Stopped due to new lesions.
    Rebif March 2012-July 2012 Stopped due to bone marrow failure.
    Tysabri August 2012-present.

    Current Medications:
    Tysabri 300 mg
    Topamax 300 mg
    Trileptal 200 mg
    Carbazapine 200 mg
    Baclofen 80 mg
    Valium 10 mg
    Compazine 25 mg

    MS history:
    Internuclear opthalmoplegia; optic neuritis with optic nerve atrophy bilaterally; bilateral trigeminal neuralgia; swallowing problems due to pontine lesions, also speech problems. Left sided weakness.

    Symptoms:
    Numbness
    Buzzing
    Pressure in head
    Weakness in left side
    Blurred vision chronically
    Loss of taste

    Tysabri infusion #3

    October 17th, 2012

    I had to move my Tysabri infusion out to six weeks from the last infusion due to my monthly cycle. It was giving me pseudo-exacerbations. I went to get a depo shot and that took care of that. Sorry guys for the details.

    My infusion went well. The nurse forgot to flush my port before deaccessing it, so she had to re-stick me to flush it with heparin. FUN!

    Since I last checked in I have developed increased problems swallowing, weakness in my right side (left was already weak), and weird myokemia in my face and chin. I have a brand new pontine lesion on the right. That makes 5 in the brainstem. It is officially a collection!

    Have a good month guys!

    Lisa

    September Tysabri Blog: #2

    So, #2. I went for my 2nd Tysabri on the 10th. I was hoping for that Tysabri high that people say you get...not yet I guess.

    Went in and had to wait for my meds again...not as long this time.

    This time I did have some chest pain with my infusion. I told the nurse, but then thought it could be from the tea I was drinking. I forgot to say that I had gotten a headache from the last treatment for about a week and thought I would try caffeine this time. So, I thought, could be reflux since I can't swallow very well.

    Anyway, I gave it some time. It went on for 2 days so I went in to see my PCP and he did an EKG...fine, CXR, fine. I now have medicine for reflux. Which I guess is a side effect of Tysabri.

    I have also noticed some pain in my hands...nerve pain. Along with the headache, and weakness in general this time around. LOVELY!!!!

    Anyway. Hopefully it passes soon!

    August Tysabri Treatment: #1

    This was my first treatment. I was super nervous about going to get it because I had read and heard so many things about Tysabri that were bad. Biogen (the makers of Tysabri) sent me a really nice bag and blanket that thoughtfully were not marked with Tysabri all over it so I am not a waking advertisement when going into the clinic for my appointment.

    I had a port-a cath placed in July. That is a whole story unto itself. Let me tell it. They couldn't get a peripheral IV in to give me my sedation (which is why I needed a port to begin with-they could never get an IV in), so I had to go with no sedation while they made the initial cut in my right internal jugular vein. Now, that was NOT COMFORTABLE AT ALL!!!!

    I was draped, so I wouldn't really complain that much, and had a mask on. Finally I let out a little wimper, so they said, oh, are you in pain. YES! I blinked my eyes, tears flowing down. So they quick
    threaded the catheter in the internal jugular vein and pushed Fentanyl in along with Versed. Now, Versed makes you forget so I don't remember the rest of the procedure, but when I was done the nurse said I needed to tell them when I was in pain, not just put up with it, so obviously it happened again during the procedure.

    So, anyway, back to the infusion. I get in to the hospital, they take me back to the infusion room (I go to a large research hospital), I get settled in a nice big recliner. The nurse comes in and accesses my
    port and starts some normal saline running. I wait an hour for my Tysabri to be brought up from the pharmacy...apparently they had to go to the research triangle park in Raleigh where they make it, from
    Chapel Hill where I am to pick it up (only kidding). I don't know what in the he*l they were doing.

    Anyway, the TV was on.

    I am glad I had my blanket it was about 25 degrees in there. As my grandmother says "you could kill hogs in there". Yea, we from North Carolina all right. But I'm not a redneck..I had it educated out of me. Can't help who your family is though.

    They gave me 2 Tylenol, 1 Benadryl. I had already taken 1 Valium for dizziness, so I was OUT like a light in about 30 minutes. They started the drug when it came. I had no real problems until about 45
    minutes in when I woke up more dizzy.

    They slowed down the drip. It got better. They just continuously take your vitals. The biggest excitement was a dude passed out getting an IV put in. Poor guy.

    So I had to sit there 1 hour after the infusion was done to make sure no side effects. I did fine. Then I went home. Had a driver.

    The only thing I noticed was I had itchy hands the day after and needed more Benadryl.

    That was it.

    © Multiple Sclerosis Resource Centre (MSRC)

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