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    Just started Gilenya

    So, today is my fourth day on Gilenya. I've been keeping a journal on my iPad so that I can tell my Neuro exactly what's been going on. This is all copy & pasted, so it's a little weird, but I just wanted to put what I've experienced so far

    "Day 1, the monitoring day, was boring as all get out, but I see why they do it. My heart rate and blood pressure did go down, but nothing scary, just so exhausted. Got in bed later on that evening and once my head hit the pillow I got the worst headache I've ever had in my life! Had to hop in my truck to get some Tylenol because I don't even keep that around the house. After the Tylenol kicked in I went back to bed. BUT, I was having a hard time breathing, so I used my Albuterol INHALER! I had no idea that there could be a bad interaction between the two meds! Well, I didn't die, so no biggie I guess. It still would have been nice if someone let me know!

    Day 2 I was afraid to take the Gilenya pill....I literally cried while I was taking it out of the Rubik's Cube packaging (a pill bottle would be nice). This was a pretty decent day, super exhausted, but no headache!

    Day 3 Beginning to wonder if this pill has thrown me into some sort of flare-up...whatever the heck that means. My normally numb hands are tingling like they're on fire! I just want to crawl in a corner and die!

    Day 4 I guess I need to make sure I drink LOTS of water and go to bed early enough because today has been a pretty "normal" day...I even wore heels to work! I can live with feeling like this every day. It's not my 100%, but it's better than the last few days! Maybe it's the huge Starbucks and 5 Hour Energy I drank today...who knows."

    As you can see, every day is very different....as are all of US different. I think my biggest hang up is that all the pills (supplements) I take are things I WANT to take. Until Gilenya (or birth control lol), I have never had anything that I HAD to take on a daily basis. I find it funny now that I didn't even have Tylenol in my house...and I have two teenagers! We've all been very healthy....thank God!

    I'm hoping this Gilenya goes well for me....I work a lot and having this wonderful illness makes THAT hard enough all by itself!

    Please be sure to ask lots of questions, write them down if you need to. Mention ALL meds you are taking! I know how fun it is to try to remember things these days...thanks MS! I'm pretty sure I didn't mention the inhaler, and even though I don't use it often, I do have asthma....it has to be in my chart somewhere. They don't just sell those at Circle K!

    Another thing....READ READ READ! There's some scary stuff out there when reading about this drug, but you just have to weigh your options I guess. If you've been around the MS block a few times, it may not be so overwhelming. But for the newly diagnosed, it's almost obsessive!

    It takes A LONG TIME to start treatment, or maybe it just seems like it to me. I was first diagnosed December 9, 2015. I had all necessary tests....bloodwork....eye tests...blah blah blah within the first month...My Dr AND ins co approved me to start it January 15,2016....didn't take my first dose until April 27, 2016...Maybe that's normal, but since I've never had to deal with doctors like this it seems like it took forever. On top of the fact that you have to on everyone's case every step of the way!

    Ok, now I'm just rambling...it's WAAAYYY past my bedtime....I hope I don't pay for this tomorrow!

    Take care all!




    #2
    Hello How's the Gilenya working for you? It's been a while on the updates. I am on day two. The only thing I can report is I had to stay at the cardios for ten hours as my heart rate stayed below 50. I feel good on day two just very tired. I account the "feeling good" to finally getting on an MS medication and all the stress of the past three months ending. So not the meds. How long before the Gilenya starts to work?

    DX PRMS

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      #3
      Been a couple weeks since you posted vender by now your body should have gotten pretty well adjusted to Gilenya. I have heard it can take up to six months to get totally adjusted to what it does to you but after all this time I really don't remember my first six months so not sure.

      Once your body gets adjusted though there really isn't any "knowing" it's working your symptoms just kind of slowly fade into the background and for the most part relapses become a thing of the past. You will still get the occasional flare but if you pay attention you will probably always be able to trace those to a trigger event. Before G flares and relapses were a random scary part of life since G very few relapses and every flare I can point to what caused it heat, stress, fatigue whatever. That makes flares much less scary.
      Rise up this mornin, Smiled with the risin sun, Three little birds Pitch by my doorstep Singin sweet songs Of melodies pure and true, Sayin, (this is my message to you-ou-ou

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        #4
        Originally posted by TaoWarrior View Post
        Once your body gets adjusted though there really isn't any "knowing" it's working your symptoms just kind of slowly fade into the background and for the most part relapses become a thing of the past. You will still get the occasional flare but if you pay attention you will probably always be able to trace those to a trigger event. Before G flares and relapses were a random scary part of life since G very few relapses and every flare I can point to what caused it heat, stress, fatigue whatever. That makes flares much less scary.
        I was always confused by the relapse. Then my Neuro explained PRMS to me. So they are not even sure if gilenya will help with my PRMS. Relapse what's a relapse? I wish. I know whaaaaa.

        So far fatigue and no memory.

        Comment


          #5
          Gilenya has been shown to be highly effective in most people with RRMS but of course everyone is different so no there is no way of knowing if it will work for you. Make sure you give it 6 months though before deciding it's not working.

          Also for me I spent about a year-year and half wallowing and just seemed to get worse and worse. When I finally got off my rear and did something active again I started feeling the difference almost immediately. The first couple weeks I was exhausted but as I built up strength it got better.

          I have honestly not been bothered by MS in months and that is after 12 years since first DX. I am taking vitamin D, vitamin B12 for energy, Gilenya and that is about it. I have mostly stopped the klonopin. I work as a fireplace technician which requires walking, standing, kneeling, lifting, and cognitive ability. All that as a 12 year patient with MS. Yeah I love G and feel that it is a miracle drug for me.

          We are all different though so all I can do is hope you experience the success I have.
          Rise up this mornin, Smiled with the risin sun, Three little birds Pitch by my doorstep Singin sweet songs Of melodies pure and true, Sayin, (this is my message to you-ou-ou

          Comment


            #6
            I think we are hijacking this thread?

            "Also for me I spent about a year-year and half wallowing and just seemed to get worse and worse. When I finally got off my rear and did something active again I started feeling the difference almost immediately. The first couple weeks I was exhausted but as I built up strength it got better.

            I have honestly not been bothered by MS in months and that is after 12 years since first DX. I am taking vitamin D, vitamin B12 for energy, Gilenya and that is about it. I have mostly stopped the klonopin. I work as a fireplace technician which requires walking, standing, kneeling, lifting, and cognitive ability. All that as a 12 year patient with MS."

            I have never stopped moving. I am a licensed residencial builder. I have had to come to the fact that my body just can't do what it used to no matter how hard I push it. I don't mean to complain but it's kinda strange that in a year I went from building houses to having trouble walking, all the time. I'm not wallowing I'm angry. I have this fear if I stop I'll die. But my body is just not working. i never have a "good day". Never! I am really hoping G works for this PRMS. it just sucks. All ms sucks. Only 5% of MSer's get PRMS it's a pain. It never ends. Never. You honestly don't have a choice when my body says no more it means no more.

            One guy told me "I won the MS lotto". That didn't make me happy. Not funny but I will laugh.

            Comment


              #7
              I hope you see the success with it I have. I used to be a fireplace installer but that became to physical. In the past 6 months though as I have felt better and better I have been thinking of taking some fireplace installs since the pay is so much better.

              The problem is I would have to get the insurance and I am afraid I might not be able to do enough to make that payoff. I'm talking with one of the contractors we use and I hope next spring to start riding along with him. That way I could try a few before I make the leap.

              We will see how it goes but for the first time in a couple years since I had to quit doing the installs I am actually hopeful again.

              Not sure how I would fare as a builder though, seems like that is a high stress job. For me stress seems to drive my MS more than physical activity does. Not sure there is anyway to reduce your stress in that job, but maybe hire a good super? I don't know but if you can find a way to get rid of stress or at least reduce it maybe you would find more physical ability available to you?
              Rise up this mornin, Smiled with the risin sun, Three little birds Pitch by my doorstep Singin sweet songs Of melodies pure and true, Sayin, (this is my message to you-ou-ou

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                #8
                Tao. I'm not stressed (that much). I think PRMS is different than rrms. The physical labor destroys my body. I still have my license but dropped my insurance because I can't take jobs.

                It sounds like your in the trades finding a good super is as rare as hens teeth. Lol. I can't drive because of my BINO.

                I dont mean mean to complain but I get this ms and lucky me I get PRMS AND BINO awesome! Not one rare thing but two. Fantastic!
                It could always be worse. Right? I'm complaining and my buddy needs a heart. Seems petty.

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                  #9
                  Your buddy needing a heart does not lessen your losses. You can be compassionate to him and grieve for the change in your circumstances. Accepting the loss takes time and ingenuity to work around the new challenges. I think its a long-term journey as as soon as we adjust to x, we get thrown y.
                  So, sending you positive energy and hopes of the G doing its thing.

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