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A Gilenya v Tysabri question

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    #16
    Crap! That being said, Gilenya is not a bad first option as a DMD. Maybe Gilenya will get him to Ocrevus. If you don't feel it's working as you'd like, just keep pushing. Lemtrada has some possible long term health problems; however, infusions have the highest efficacy so go with an infusion. I agree with Myoak to look into a stem cell transplant once the research has settled. I really believe this will be where it's at. This community is here for you and your son.

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      #17
      Hi again sharon,
      Sorry to hear your sons jc+ is too high for tysabri.

      Although lemtrada has a reasonably high efficacy i would be avoiding it if possible. Mainly because you can't take any thing else for 48 months after infusion because your to immuno suppressed.
      Lemtrada has been used as chemo for about 30 yrs and most stem cell treatments also utilise heavy chemo drugs.

      I had my first attache at twenty and it is very scary.
      At that point in my life i seemed to have my whole life ahead and plenty of time to do what ever i wanted- then it felt like it had all ended and i had to give up all youthful hopes and face up to a very serious and rather daunting future.
      Your son is probably going through something like this.
      30yrs on - and i have lead a very satisfying life - family and work.
      It really helped to have my husbands support though . So with family support and a given time i hope your son is able to accept and achieve a positive attitude again.
      All the best to you,
      Caroline.

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        #18
        Thanks ru4cats, that means so much x

        He is actually having a flair or something now too, so I'm desperate to get some medication started.

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          #19
          Sharon,

          This video was released two days ago and has excellent information on the current MS drugs, highlighting Ocrevus but discussing all the current drugs. Thought you might find it interesting.

          https://www.youtube.com/watch?v=J4prsO-FDzs

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            #20
            Some of his mood changes can be due to the steroid treatment- ask the doctors.

            He will find Gilenya easy to take and stick to. Gilenya kept lesions at bay for quite a long time for me but did not stop relapses. I am in a trial for Ocrevus and I wonder if there is a trial within commuting distance for your son for Ocrevus. Does the govt. run a website of clinical trials that you can search? I would not go for Lemtrada. For the risks it poses, I would risk stem cell treatment first. Is there a clinical trial for HSCT near you? I know that folks there have gotten it.

            Please check Dr. George Jelinekīs site- he is Australian and gives away his book to any Aussies with a diagnosis. If your family can afford it, going with your son to the Gawler Institute for an OvercomingMS retreat would be life changing for the better. Jelinek is a strong believer in meditation, diet and exercise in addition to the DMTs. Dr. Terry Whals has her own program and the two do not completely agree on the dietary measures. For sure I would avoid saturated fats as much as possible. I have combined the two approaches and donīt eat gluten or dairy (yes on eggs now and again). No transfats, minimal saturated fats. Yes for seafood, venison and grass fed beef. Chicken if it has been raised on real food. Meditation turns on good genes and turns off bad ones. Do some reading on the gut-brain axis. Please have your son either take probiotics or eat pre-biotics- fermented foods or fibrous foods that ferment in the colon.

            You seem very proactive and that trait alone will make you feel like you have a plan and some sort of control over this. As worried as you are, allow your son to express and find ways to alleviate the anxiety and fear that come with the diagnosis. In some ways the psychological stress is as bad as the physical symptoms, but itīs invisible to others.

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              #21
              Hi Caroline,

              thanks for that, I've done a bit more research on Lemtrada and we're definitely not ready for that yet. I've recently read about lots of people going through it and still having bad relapses

              Yep, he's not saying too much but I think now things have settled he is a bit more worried about what will happen in his future so it's great to hear from people like you who have still had a wonderful life...we have heaps of conversations about what someone on line said, so thank you

              ru4cats Thank you!! That was brilliant! I was a little concerned about the cancer risk but that alleviated a lot of angst. I so wish we could see that Neurologist, I really like him and his hit it hard attitude

              Hi Temagami,

              Thanks so much for your detailed reply.
              How are you doing on Ocrevus?
              He can actually get on to some sort of program with his new Neurologist, apparently Ocrevus has been approved by the TGA here but not the PBS as yet but she is able to have 10 patients on Ocrevus, hopefully by June and thinks he should be one of them.

              So even though he is Day 7 on Gilenya with no major issues, I think he will probably go for Ocrevus. He is keen for an infusion as he doesn't like taking tablets and I'm keen for Ocrevus for the added amount of relapse protection.

              I have actually pointed him to Dr Jelnick but he's a bit reluctant right now...but as he gets a bit older and wraps his head around it a bit more I think he will be more open.

              Definitely letting him express himself, at this point I think he's still a bit in denial and is just concentrating on being able to go on his first solo US adventure that he had planned before diagnosis, my guess is after that he might feel the emotional impact a bit more. He has his GP, MS nurse and mates so hopefully enough support outside of us if he needs it

              Thanks again to all of you for your support

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                #22
                "hit it hard attitude"

                Best news I've heard so far today! He's a keeper...that's what you want!

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                  #23
                  SharonK,
                  I have no info for you..just wanted to wish your son well.
                  I believe a positive attitude is one of the best defenses/offenses against ms!
                  I hope this won't offend you..G-d bless your son and you!
                  Linda
                  Linda

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                    #24
                    Definitely not offended Linda, deeply touched actually...thank you

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