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Is it worth it? (Miserable vent).

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    Is it worth it? (Miserable vent).

    In order to have Tysabri, I would have to give up work and devote my life to it. Bits of me can see the point, other bits can't.

    Is there any use to it, if what you're doing is basically subsisting, not living, not doing anything useful, just back and forth for medication?

    I do understand, children, family, the Lord hath set his hand etc against self-slaughter, but is the point? I 'm not going to recover, or heal, or get better. Just might drag it out.

    What about other options?

    Thinkimjob, what about other options? I get the feeling that you've done your homework, so this might be a question that you've already gone over multiple times. But what about Gilenya or Tecfidera, the new kids on the block? I've been on Gilenya for about eight months, and other than a low-grade non-stop headache, I can't sense any other side effects, and even the headache might have a different cause.

    Anyway, I just wanted to run that by you. I hate to hear people talk about suicide, even in jest. And I get the impression that you were only partly in jest.
    "He is no fool who gives what he cannot keep to gain what he cannot lose." - Jim Elliot

    RRMS, dx May 2013, on Gilenya from May '13 - Aug. 14
    Currently following Dr. Jelinek's OMS (Overcoming MS) plan


      Originally posted by Thinkimjob View Post
      I 'm not going to recover, or heal, or get better. Just might drag it out.
      While I totally agree with this sentence and have no intention of just limping myself along either from what I have heard some people feel markedly better on Tysabri.

      I'm confused as to why an infusion once a month would require you quit your job and devote your life to it?

      Best wishes with whatever you decide.
      He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.



        TY changed my life. I think I have had a better response to the med than most.

        You know I was as sick as you are right now. I was going to go to Switzerland for Gods Sake...I could not stop those dang amount of steroids was working. I wanted it to end.

        TY is something not to be taken lightly and I was keeping it in my back pocket until I really needed it. I was suppose to start Tecfidera, but we could not wait for it to kick in. My MS Specialist was very frank with me and after that discussion with him I was going on TY even if I was JCV+, which I thankfully wasn't.

        And I don't dedicate my life to TY...just 1/2 day once a month. So I don't understand giving up your job because of TY.

        TY is a very personal choice. You have to do what is right for you. But after what I went through in 2013...I am more scared of MS than any drug. Seriously, I just want a few years of wonderful and so far TY is doing that for me.

        Be Brave my Aussie Friend.
        "Yep, I have MS, and it does have Me!"
        "My MS is a Journey for One."
        Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri


          Why would you have to give up your life to take Tysabri? I take it to live, certainly not the other way around. The side effects are few and transient and it only takes an hour out of every month. Are you talking about PML?


            I fully understand. I have been in a steady decline for 3 years.
            I work, and can barely walk. I tried Rebif for 7 months with no effect, then switched to Ty for about 27 months...again with no effect and a steady decline.

            I know that meds work different for everyone, but although my Neuro keeps telling me I am RR to get the meds, I know at this point I am PP.

            I only stick around because I would never do that to my wife.

            This life sucks. I can only work and watch TV.

            Good for those who are less affected and able to do things.
            Some of us can't, and not by attitude or choice.
            Yes, I have MS, and it has me.


              Because I live in a small country town and the nearest infusion centre is three hours away, so let's say at least two days a month, plus recovery time, plus extra MRIs,
              I not too worried about getting the very rare disease from hell.
              Only thinking about it because Aubagio is no frolic in the fields...


                I'm not up to speed on the number of people with MS who have experienced more severe MS after starting Ty.

                I know my MS fatigue, which has always been of the dibilating variety, got much worse for the first 3 months on Ty. Something I didn't think was possible. Fatigue is back to baseline, maybe ever so slightly improved some days.

                After the first 3mos of Ty, a decade long bout of insomnia and b&b incontenience both resolved. Two life changing improvements.

                Since starting Ty I've also had worsening of mobility related issues, (a stooped posture with shuffeled gait, dx'ed gait apraxia), MS hug, worsening in lower leg sensory sx's and reflexes, and a new problem with my hip joints 'getting stuck' and no longer moving? or 'working' very well.

                Ty has been a mixed bag of improvements and setbacks. Setbacks just might be MS progression that I would have had even without Ty? Or is Ty no longer working for me? I don't know.

                The risk of another 'MS rebound' prevents me from stopping Ty, a major consideration for anyone condidering it. Also not wanting to lose ground I've gained since starting Ty, sleeping near normally and with the b&b problems
                'behind me'. Oh, almost forgot the whole PML and CJV risk, major considerations.

                The travel time for you does sound like an inconvenience, combined with your existing fatigue, could be a major issue. My doc orders 2 annual MRIs anyway so Ty has no affect on that. I hope whatever your decision, it's one that is right for you.


                  ThinkI'mJob, I've often gained great insight and wisdom from your posts and my heart is breaking to see that you are down and suffering. I'm so sorry it's tough for you right now.

                  I, too, have been quite depressed lately and have often had the same I can't say I have any enlightening advice to pass on.

                  I will say this, in terms of your state, I trust - from your screen name and some postings - that you are a Christian. I also trust you know the history of Job. Remember this. You will ultimately be rewarded (but perhaps not on earth).

                  Also know that you have given me - and I'm sure others - wonderful words of advice based upon your own experience with MS.

                  As for Tysabri, this is not an easy decision for any of us. I'm currently in a double-blind study for the use of Tysabri in SPMS patients. Although I don't know for sure, I am relatively certain I am receiving the drug (Ty) due to side effects, etc. I've recently found out that not only am I JCV+, but my titer is a 3.8 (very high). I too wonder if the Ty is worth it. I'm hopeful the study results (in general) make it worth it. Nevertheless, it's one day at a time for me in the study at this point constantly weighing the pros and cons. Unfortunately, I don't have any great advice on the Ty, we all carry the burden of constantly weighing the pros and cons.

                  Just know you are not alone, and that your participation here on MSWorld is very valued.

                  Hang tough.


                    Sorry, Seasha, I did use the "eff" word. Won't do it again.

                    Thank you all. It is 43 degrees down here, has been for a week, and will be for another. The air conditioner threw its hands up in defeat, so waiting for another one and stating in a cold bath.


                      Originally posted by Thinkimjob View Post
                      In order to have Tysabri, I would have to give up work and devote my life to it. Bits of me can see the point, other bits can't.

                      Is there any use to it, if what you're doing is basically subsisting, not living, not doing anything useful, just back and forth for medication?

                      I do understand, children, family, the Lord hath set his hand etc against self-slaughter, but is the point? I 'm not going to recover, or heal, or get better. Just might drag it out.
                      I plan to ask my doctor about going off treatment all together. I stopped Avonex along with its big, fat copays to buy DD Christmas presents. For me, it was well worth it. Now I wonder if I really need any of these questionable MS treatments. For the 10 years I have lived with MS, I have never had a relapse or a remission. I have felt really crappy since the first day and nothing has changed.

                      You don't have to take Tysabri. You don't have to take anything. You are your own best health advocate. Take some deep breaths and think about what is best for you. If you don't get it right, try something else. Trial and error IS the only way I know how to deal with this mess. There are no certainties but dearh and taxes anyway.

                      Chin up, dear. If you were on this side of the equator I'd round you up for a cup of coffee or tea and a chit-chat.
                      Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994


                        You said it's 43 degrees! That's almost 110 F. And you don't have air conditioning. That is dangerous never mind unbelievably miserable.

                        Last summer I was in such a predicament and I ordered something called a Chilipad. It was expensive but I figured it would save in electric bills and provide security against air conditioner failures. It's a mattress pad that runs cold water through plastic tubes to cool your body.

                        Staying in the bathtub is a good solution but not too good for sleeping.

                        But your question was different. I'd say if you are still working you're doing pretty well. Maybe you can wait to decide about Tysabri. On the question of self deliverance, I have my views but they are illegal in most parts of the world and banned by most of the worlds religions. If we knew we had the choice to go gracefully without condemnation there would be fewer suicides.


                          It was actually 46.5C. I kid you not. The bath itself was hot to touch, as were the walls. Tea-towel wrapped round ice cubes draped round my neck did the trick.
                          Two elderly people had to be flown out to Brisbane with dehydration.

                          Never mind, it's only 40 today, the air conditioner was replaced, friend also lent me her portable ice-powered one, and the world seems a much better place.


                            46.5! That's 115.7 F. GASP! That's when the AC always breaks down. Glad you got a new one. The world is definitely a much better place when it's cool.


                              late reply...

                              ...and not an answer for you but, for what it's worth, there's a scared, newly dx'd someone across the globe that gets some spirit from your posts.

                              Somehow wry humor is more palatable right now than the bracing pep talks from the doc. So thanks