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    In search of a different treatment...

    Hi!!

    I am 19 and was diagnosed in December (when I was 18) and began taking Extavia in January. I just got my 6 month "check-up" MRI and within 6 MONTHS I have 2 NEW lesions in my brain. Coming up with a total of 5, maybe 6 lesions.

    My neurologist wants to switch my treatment to a more aggressive one, the three that came up in the discussion are: Gilenya, tysabri, and rituxan.

    I have NO IDEA what do and how to deal with this... I got off the phone with my doc and came straight here for some answers..

    I can't stop thinking about how my life will be if I continue to gain lesions every 6 months and I'm terrified.

    The side effects of these new medications scares me as well. The PMS is the most terrifying.


    If you guys could please send some guidance my way along with stories related to these medications or how to deal...


    THANK YOU!

    -scaredhanna

    #2
    I believe Tysabri is still the most effective. I am in my 7th year, no new lesions and no medication side effect.

    It is an infusion based treatment, every 28days. You may read some scary risks related to a brain infection, PML. This risk is associated to the JCV virus, so they would test your blood for antibodies before you could start and while on the meds. Even if you are positive, you can take it if the level is not too high.

    The infusion lasts 1 hour and you have to stay for 1 hour observation after. If not hydrated, I may get a headache after. But I make sure to drink plenty of water the days ahead. I used to work the afternoon after it, but now, am usually wiped out. But a good night's rest and good to go the next day.


    There is a treatment forum that has sub forums for different medications. You can get some insight reading thru them.

    I can only imagine how overwhelmed you must feel. Do you have any family or close friends that can help you weigh the pros and cons of your choices? Hopefully your neuro will help you weigh the choices too.

    Lots of luck to you.
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #3
      Tysabri

      You will hear from more experienced people than me, but I am in the process of getting on Tysabri after a long period of not having treatment (first symptom 2003, diagnosed in 2018). My doctor gave me a list of several drugs and after a discussion we narrowed it to Tysabri, which I now feel is the very best and safest thing.

      You're 19 years old. You have the opportunity to take one of the most aggressive, proven treatments starting now. By the time you're 30 there could be a cure, but during that time you will have - hopefully - slowed or stopped the progression of the MS. Wishing you the very best!
      All the best, ~G

      Comment


        #4
        Originally posted by gargantua View Post
        You're 19 years old. You have the opportunity to take one of the most aggressive, proven treatments starting now. By the time you're 30 there could be a cure, but during that time you will have - hopefully - slowed or stopped the progression of the MS. Wishing you the very best!
        This is so true happyhanna and I hope your future is stable and lesion free!

        Here is a link from the Medication forum that will be beneficial in choosing a new treatment plan. This chart compare the different DMT's and shows the safety and efficacy rates:
        https://www.msworld.org/forum/showth...omparing-DMT-s
        1st sx '89 Dx '99 w/RRMS - SP since 2010
        Administrator Message Boards/Moderator

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          #5
          THANK YOU!

          Yes I do have people helping me through this, thankfully! My family is helping me but when it comes to these things they are just as in the dark and scared as I am. Seasha that chart helped SO MUCH. It was very eye opening. From the looks of it Tysbri seems to be the most effective and liked. I’m going to do some more research and hopefully choose the best option. Thank you again so much.

          Comment


            #6
            Hi Hanna,
            I have been on Tysabri since 2006. If I could've started it a year and a half earlier I would have no sx of ms. It has given me QOL, no new or active lesions and made some of the old ones smaller or gone (this happened within the first couple of years) and halted progression till about 6 months ago and now my R leg foot drop is a bit worse. I have been getting my infusions every 56 days instead of 28 for approx 3 years... the American Academy of Neurology discovered approx 3 yrs ago that there were no cases of pml if infusions go 8 weeks instead of 4 after 2 years on med. For the first 2 years there are very few if any cases of pml when the infusions are every 28 days, that's why they say after 2 years.

            I go to the RMmsC in CO, it is world reknowned. They recommend being aggressive as you can. Do your homework, Hanna and make an educated decision with your neuro. I am 69 yrs "young" dx when I was 39 . My R leg drags, I use a scooter for distance.. thank G-d I have a good life and 98% of the time I have a positive outlook.

            All my best wishes
            Linda

            Comment


              #7
              Hello Hanna!

              Linda is right... during the first two years on Tysabri there is almost no chance of getting PML whether you are JC virus positive or negative.

              The JC virus causes PML. So, no JC virus equals no PML. If you are JC virus negative then you are in a great spot. BTW, about 55% of the population is JCV+.

              But even if your are JC virus positive, you can safely de-risk the possibility of PML by extending time between doses to 5, 6, 7, or 8 weeks instead of the standard 4 weeks, which is what you would be on initially. So, the first two years, you could be on Tysabri safely getting infusions at 4 week intervals and transition to longer intervals after two years even if you are, or become JC virus positive.

              The PML risk with Gilenya is .07 per 1,000 patients and the PML risk for with Tysabri on dose extension has been zero, so far, and it has been over 4 years and counting for those extending time between infusions to over 4 weeks. Plus, Gilenya is nowhere near as effective as Tysabri.

              For some additional info if you are considering Gilenya, I will quote a prominent neuro, Dr. Gavin Giovannoni,...

              "If fingolimod is a serious consideration we would need to check her varicella-zoster virus (VZV) status and make sure she does not have latent tuberculosis (TB). MSers who are VZV seronegative - who don't have antibodies to the virus need to be vaccinated before starting fingolimod.

              TB screening requires a specialized blood test or a skin test. In MSers exposed to people with active TB in the past, so called high-risk MSers, also get a chest x-ray at our hospital. The chest x-ray is not mandatory, some neurologists feel it is unnecessary. All MSers considering fingolimod have to have their hearts examined and an ECG performed. I am confident enough to do these two things myself, however, some MSologists prefer MSers to see a cardiologist before starting fingolimod." End Quote.

              Hanna, IMO, Tysabri is the most effective MS DMT with the least side effects if you are JC virus negative, or, if you de-risk for PML by going on dose extension after two years.

              Literally and truly, the years my spouse was on Tysabri (2002-2017) it was virtually as though she didn't even have MS. No new lesions ever on Tysabri. Remarkable! And how many people here have similar stories of how well they are doing on it, Linda and others.

              Best wishes! Life favors the courageous!

              Rolly

              Comment


                #8
                Update:

                Just wanted to give you guys an update. I got my blood test back and, thanks to God, I am JV negative ❤️🙏🏼

                Now my neurologist has recommend i get a CT scan of my chest with contrast? ( don’t exactly know why )

                Other than that, I am super happy and excited to begin tysabri soon!

                I go to Kaiser and they are actually getting an MS specialist in to the clinic near me by the end of August and I’ll be transfer to their care, which also makes me feel so much better since they will fully know everything they need to know about MS, unlike my Neuro now who doesn’t quite know all.

                anyways, thank you all so much for the guidance!💛🧘🏻*♀️

                Comment


                  #9
                  Congratulations Hanna, on your choice of medications!

                  You have chosen exactly what I would have after decades of being immersed in the study of MS and treatments.

                  Very likely IMO, you will live a normal life because of your choice of Tysabri. Even unintended pregnancies on Tysabri have tracked closely with the general population, as you can and should read about in the Tysabri thread under "355 pregnancies".

                  The recommendation is that you not get pregnant on Tysabri but I'm sure that is future, not immediate. I just wanted you to know that normal is likely with Tysabri. You can always halt Tysabri because unlike some other DMTs, Tysabri clears from your system relatively quickly if or when you do decide on children. A critically important point for a young woman.

                  As far as the CT scan goes, you should ask your doctor but I think it is possible he/she wants to rule out Chronic Granulomatous Disease (CGD). Likely just a precaution as part of their standard procedure to rule it out.

                  I am so happy for you! You are going to do spectacularly well!

                  Best Wishes!

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