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Mad, scared, & want to quit

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    Mad, scared, & want to quit

    Ok, everyone, I was diagnosed in Aug / Sept 2010 with RRMS and was put on Rebif. After a trip to Mayo and KU Med Center, they said Rebif wasn't working. I've also found that I have a very aggressive form that has little noticeable differences between the R and R. They've recommended one of three drugs: Tysabri, Copazone, or Gil????.

    Right now I'm sitting in KU Med Center getting my first steroid treatment. With everything going on; new drug to choose, getting the great news of it being aggressive, and being depressed, I just feel like giving up. I've lost so much in the past 10 months, I swear I'm losing my mind.

    Sorry to rant, everyone; but this is the first time I've been really down since my DX.
    Dx'd 08/2010 RRMS
    Rebif, Copaxone, Gilenya, Tecfidera
    "Fall down 7 times, get up 8"

    #2
    hparks, You have NO reason to be sorry. You as most of us have lost who we used to be. We have to learn a new way of life/living.

    I miss so much and it hurts that I won't be doing what I used to and every day brings something new... MS loves to remind me it's still there and when it loves me soooo much the hugs come on and I feel like I just want to die as well.

    I think most of us have felt that way at one point. PLEASE KNOW you are NOT alone and there are many Wonderful people here that will help and have some great answers.

    I would check into talking/therapy. It really is for everyone who has such a life change.

    Don't give up! PLEASE come back often and vent all you want there is NOTHING wrong with that.... As for people far worse sure there are but right now YOU are hurting and YOU feel low so vent, cry, scream and hit a pillow. My thoughts and Prayers are with you.

    Hugs
    Dx MS Aug 2010 (after 2 years of searching)
    Started Copaxone Aug. 2010

    Comment


      #3
      Rant away! We're here to listen.

      Where was your dx done? Have you continued to see the dr. who started the Rebif?

      Why the trip to Mayo and KU Med Center? Why did they say Rebif wasn't working? Was it because of MRI or other test results?

      "little noticeable differences between the R and R." sounds like me, though I haven't heard the term "aggressive." But I'm not aware of having remissions, except for 3 days once when I didn't have any symptoms.

      As far as recommending other drugs, that's what they do if what you're on isn't working based on test results. If one's not working, they try another. This kind of takes the pressure off the decision. As my neuro said, picking a drug is not like buying a house. You don't have to live with the consequences for years into the future. if it's not working, just try another one.

      Tysabri is what I just started, & is often recommended for people who haven't responded to another drug, which sounds like you. Copaxone has no side effects other than injection site reactions. Gilenya is the first and so far the only oral drug. It's new on the market.

      Having all this stuff happen can be so overwhelming, but your dr. is just trying to get the best treatment for you. Hop over to the Medications forum & learn what you can about those 3 drugs.

      Best of luck!

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        #4
        Please feel free to vent to us anytime, we understand.

        If they are saying your MS is aggressive my opinion would be to fight it as aggressively with an aggressive medication and allow the specialists to help guide you with regard to which one to try.

        I really hope things get better soon. Hugs, Jules
        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.
        Anonymous

        Comment


          #5
          Originally posted by LindaT5761 View Post
          Tysabri is what I just started, & is often recommended for people who haven't responded to another drug, which sounds like you. Copaxone has no side effects other than injection site reactions. Gilenya is the first and so far the only oral drug. It's new on the market.
          Sadly, it isn't true that Copaxone "has no side effects other than injection site reactions"...it can cause an IPIR (Immediate Post Injection Reaction) with symptoms similar to a heart attack. This reaction is uncommon, but not rare. The good news is that, while frightening, it passes on its own and causes no lasting damage.

          More to the point, though, Copaxone isn't a particularly effective drug. About 30% of people who take it have positive results...which puts it on a par with Betaseron, Rebif and Avonex.

          Tysabri and Gilenya are much more effective, and therefore are considered to be more appropriate for treatment of aggressive cases of MS.

          Linda's suggestion to check out the Medications forum for more information on these drugs is a good one.

          I hope you'll be able to get a handle on all this soon, and to start feeling better & more confident.

          Comment


            #6
            vent all you want. Many times I find that I have been thinking the same thing as you all, but I just do not post it. I am going the end of the month and I am scared that Rebif is not working also. I always feel poorly and I do not feel like I am getting better. I now fall alot and that is new to me. I realize that my life has changed and I do not like it, but I have to learn to live with it. I am lucky, when I get really down, I visit my 1 yr. old grandson, who always gives me a great smile and a hug. That always cheers me up.

            Good luck with everything and like everyone else said, come here any time to vent. We have all been there.

            JudySz

            Comment


              #7
              If it weren't for this message board I'd lose my mind with all of this unfamiliar stuff happening to my body and mind. Although I'm not usually the type of person to rant in public, this is the 1 place that it's "safe" to do so.

              On another note, I must be in the 30% of people that Copaxone works for. I was DX in Sept 2005 and started on Rebif. Had numerous flares which required steriods while on Rebif. Started Copax in Aug 2007... had a major flare in Jan 2008 and another in Jan 2009 but so far so good. Yes, it's there every day and new symptoms come and go but overall it has worked best for me. My left eye is blind beyond repair from all of the infammation but I'm mobile with very minimal cane use. Best of luck with your choice.
              RRMS 2005, Copaxone since 2007
              "I hope to be the person my dog thinks I am."

              Comment


                #8
                I agree with venting all you want, or all you need to. It's hard trying to talk to someone that hasn't gone through all of this, so they don't "really" understand. Even my hubby, as much as he tries, doesn't get it.
                Diagnosis: May, 2008
                Avonex, Copaxone, Tysabri starting 8/17/11

                Comment


                  #9
                  Very big hugs to you.... back when I was Dx'd in 2005 I too was put on REBIF, I just was not responding to the med. My General Neuro referred me to a Neuro Specialist. There he ordered and MRI got the results and he said that my brain was lite up like a xmas tree so we are going to attack the Ms aggressivly like it is attacking you.
                  So I was told to stop REBIF and put on steriods IV at home for 3days and I was to go on Chemo on DEC 27th. I have to say I am so thankful for the Chemo treatment CYTOXIN because it really slowed the Ms. I was to the point of giving up as well, but then when I meant my Neuro I felt there is hope of me having mobility back and feeling somewhat normal... I hope that its just really active still and thats all it is. Big big hugs hparks. you are in my thoughts....
                  Kari

                  Comment


                    #10
                    I'm sorry to hear things aren't working out for you on your current DMD. Your MS sounds kind of like mine I was having my first flare this winter (dx took a month just to document new growth over 30 days) and there was no remission in sight from Dec until April when i was able to get on Gilenya. I feel like I'd probably still be hurting pretty bad since my symptoms have only begun to improve since starting it. Its the first one I tried me and the Dr sort of agreed to use the drug with the highest efficacy since my MS was looking fairly aggressive and I'm glad I did.

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                      #11
                      I hope you're not contemplating suicide. That is an illogical solution to a temporary problem. Life is an adventure, and you have been blessed to live it. Stick around the future will suprise you.

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                        #12
                        Hear, hear!

                        What centerles3 said!

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                          #13
                          Suicide? NEVER!!!

                          As miserable as I may become, suicide is not an option. Suicide means that MS has won. I'll never let that SOB win.
                          Dx'd 08/2010 RRMS
                          Rebif, Copaxone, Gilenya, Tecfidera
                          "Fall down 7 times, get up 8"

                          Comment


                            #14
                            I'm sorry things are rough. My MS center has said I might need to switch to Gilenya or Tysabri right now too so I'm starting to research them. Even the side effects can be more serious than the CRAB drugs, like pp's mentioned they also tend to be more effective, so they make sense for more aggressive forms of MS. I wish you all the best; do feel free to vent whenever you need to! That's what we're here for!
                            2001: 1st 2 relapses, "probable MS." 2007: 3rd relapse. Dx of RRMS confirmed by MS specialist. Started Cpx. (Off Cpx Feb 08-Mar 09 to start a family; twins!) Dec '09: Started Beta. Oct '13: Started Tecfidera. May '15: Considering Gilenya.

                            Comment


                              #15
                              HUGS HPARK. WE ARE HERE. WE HEAR YOU. HANG IN THERE.

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