Announcement

Collapse
No announcement yet.

Has anyone NOT liked Tysabri?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #16
    Mefloquine does eliminate the JCV from the body, but it is my understanding that this is used to help remove it after PML has been diagnosed. But I may be wrong on this. CYT107 combined with CMX001 can also do this as does plasmaphersis (think that is misspelled) This last one is more to get Tysabri out of your body as quickly as possible. But this also leads to IRIS. Which is a very bad thing. It is when your body is flooded with all the white blood cells that been held at bay.

    The drug I am referring to is, at the moment, called IkT-001Pro and is being tested by Inhibikase Therapeutics, Inc.

    I tried to email the company to get some more information on it, but nothing was ever returned. My doctor spent a couple of days and finally got the CEO to call her.

    All of you who are better at looking up things on the computer than I am, it takes me hours sometimes to track stuff down, lets share any information we have. I found the website on IkT-001 from someone else posting here. I printed out the press release and took it into my doctor.

    Comment


      #17
      pballer,

      Thank you for telling me that. I would love to stay on Tysabri forever, just make the choice one month at a time as it stands now. For now, for today - I'm good. I'm great.

      Comment


        #18
        That was not the press release I printed out, but still it said the same things. Thank you so much for that.

        Doesn't it sound like it is already being used in patients? It sure did to me. But they are telling my doctor no, it is still being tested just in animals. It's all is confusing and frustrating.

        How do you guys cope? Just with everything.
        Life is good, don't get me wrong. But sometimes...........

        Comment


          #19
          I read that if you weigh 60 kg or less, you should take the infusion once every 8 weeks- do you fall into that category?
          It IS dose dependent with respect to size.

          Comment


            #20
            Great info on the meds, thank you guys....

            For how to coope, I know of three things that help tremendously:

            1. Pray.
            2. Emit thank you cells- say thank you out loud, for anything and everything.
            3. "The cure for anything is salt water-- sweat, tears or the sea." - Isak Dinesen
            (Saline drip too
            There is always a rainbow!

            Comment


              #21
              Interesting you mention about dose relative to size for the infusions. Because I was thinking that this med just seems too much in my system, and since the doctor had me waiting six weeks to re-evaluate, perhaps too much in ones system causes some of the side effects?

              I weigh 155 and am 5-6, but we all react so different and anything can cause the side effects, but good variable to consider.

              In another thread others were mentioning they get infusions every six weeks and also have a CBC done right before the infusion and if the white blood count is too low, they postpone the infusion.

              I insisted for a CBC and am going tomorrow.
              There is always a rainbow!

              Comment


                #22
                tolerating Tysabri

                Sorry this response is delayed or if I repeat anything previously posted.

                I've been on Tysabri since May 2011. Within days of my first infusion, I felt like a flare was coming on. I panicked and called my neuros. They both agreed it wasn't unusual for a flareup of current symptoms to occur because the body is processing a new drug. They assured me it was more a pseudo flare and that things eventually would settle down, which they did.

                As for subsequent infusions, I have no side effects that I can discern. However, I receive my infusion over 90 minutes instead of the recommended 60 minutes. I've done this since day 1. As long as the infusion center is okay with the extra 30 mins, I can't see why it would be a problem.

                I did suffer a terrible headache and general malaise the one time nurses forgot and infused me at 60 minutes.

                Also, it's been suggested to take an aleve or tylenol and an OTC allergy med at least an hour before infusing. I did this a couple times, but found no benefits to it for myself. I only realized this after I forgot to medicate myself pre-infusion.

                Comment


                  #23
                  I've been on Tysabri for 5 1/2 years. I will tell you that the first 4-6 months were a little hard. For several days after the infusion I'd have flu like symptoms, get really fatigued (come home and crash and sleep) and had headaches and low grade fevers. But it got much better as my body adjusted! I now have my infusion run over 2 hours instead of 1 hour and drink TONS of water during the infusion. It makes all the difference in the world. Now the recovery is 24 hours and it's more tolerable.

                  See if your doc will run the infusion more slowly. It might help like it did with me. Good luck! Hope you can tough it out. It's the best drug out there efficacy wise if you are the right patient.

                  Comment


                    #24
                    My infusions are also run in over 2 hours instead of the standard 1. It helps with any side effects of tiredness, dizziness, etc.

                    Perhaps you can try that before stopping Ty altogether.

                    Good luck
                    Lisa
                    Disabled RN with MS for 14 years
                    SPMS EDSS 7.5 Wheelchair (but a racing one)
                    Tysabri

                    Comment


                      #25
                      Thank you-that's a great idea. I will ask about two hour infusion rather than 60 min.
                      I know a saline flush is mandatory for my body too, even the big bag. So drinking a lot of water during the infusion would help too.

                      You guys are giving me more hope, thank you.
                      The side effects were so unbearable, I took about six weeks to go away, and at eight weeks- I still have a lingering headache (which who knows if that's attributed).

                      But I went back on my Copaxone because it's tolerated so well, but the dr is concerned because it's not string enough for me, and I have so many lesions throughout my thoracic, cervical and brain, and some enhanced....you know it.

                      So I will ask the dr again if the slower drip may be an option for tolerability.

                      Thank you very much!!
                      There is always a rainbow!

                      Comment

                      Working...
                      X