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  • cgermans
    Hi Everyone,

    I am living with MS since May, 2010 (sympomatic since July, 2009) and am on Copaxone. Due to the new lesion discovered in my spinal cord, however, I need to change my meds to something stronger. My neuro has presented me with Rebif, Gilenya, Tysabri or participation in a clinical trial for Ocrelizumab. Tough decision since they each have varying side effects and risks.

    Anyone out there at this point with their MS? Would love feedback on Gilenya and Tysabri. Clinical trial would be interesting too (double blind, double dummy vs. Rebif). 

    Would love to hear from you out there! Hope you're well.

    Thanks!

    Christie
  • shorty32982
    I would love to hear answers on this topic to I am at the same point and do not know what to do.  I have a 8 year old and 1 year old, so the least amount of side effects is what I am looking for.  I do not know what is the best choice.  I would love to hear some feedback also. 

    Tysabri is what my doctor is suggesting but not sure.  I live far away from my family and my husband works a lot so it not like I have help with babysitting.  So I am not sure if that is the best choice. 

    Love to hear feedback
  • THERESAF
    SHORTY,
    TYSABRI IS ONCE A MONTH, WITH FEW SIDE EFFECTS - BUT YOU DO NEED A COUPLE OF HOURS AWAY FROM THE KIDS!
    I USE TYSABRI AND HAVE NO CLUE ABOUT THE OTHER TREATMENTS.
  • THERESAF
    Shory, I think Avonex would be the best for you!
    I currently use Tysabri; because it's just once/a/month and I'm a chicken!
  • Lotus562
    I've been on Gilenya since May, so about 10 months.  I was on... Betaseron before that, gee took me a minute to pull that name out of my head.  I like taking the pills, honestly don't have any side effects.  I can't tell you whether it's working or not.  I have all the same problems, but not as bad flairs I guess. My heart didn't stop when I started it and my eyes are fine, I sure don't miss the shots!
  • deliams
    Lotus562 wrote: I've been on Gilenya since May, so about 10 months.  I was on... Betaseron before that, gee took me a minute to pull that name out of my head.  I like taking the pills, honestly don't have any side effects.  I can't tell you whether it's working or not.  I have all the same problems, but not as bad flairs I guess. My heart didn't stop when I started it and my eyes are fine, I sure don't miss the shots!


    Hi
    I found this site today, because I also am on Betaseron sice 2002. It has worked wonderfully but am out of briused areas to inject and would love the pill!
    Thanks so much or aking your time to share this info. God Bless  :)
    Delia
  • Dion
    I've had MS for 20+ years and would suggest Rebif as the best choice of the three. Has better risk/reward ratio, limited side effects, and no deaths reported (that I know of). Tysabri and Gilenya are toxic in one way or another. I would start with the least risky, see how it works, and move to others, if necessary.
  • kc41101
    Hi There,
                  I went to a meeting last night given by the pharmaceutical company for Gilyena. Not impressed. It showed how Gilyena stops progression and relapse but the side effects are all bad and from the way the speaker  told it, the side effects almost always arose while on the pill. I love the idea of not having to take an injection but I think I'm safer on Copaxone, I have yet to see or feel any side effects with it and it has stopped for lesions from producing (my last MRI was in January I go for a new one in June).
  • cgermans

    Hi Everyone and Happy Spring!

    I wanted to stop by real quick to let you know my first infusion with Tysabri went off without a hitch! It was easy yet boring. Two hours is a long time to hang out in the Infusion Room. Yawn.

    if you want to read about my first experience, check out my latest post: http://goo.gl/D3QlK. Hope this one helps others who have been presented with Tysabri as an option in their MS treatment. 

    Best always,

    Christie

  • joynerthedad
    Hi Everyone,

    I am living with MS since May, 2010 (sympomatic since July, 2009) and am on Copaxone. Due to the new lesion discovered in my spinal cord, however, I need to change my meds to something stronger. My neuro has presented me with Rebif, Gilenya, Tysabri or participation in a clinical trial for Ocrelizumab. Tough decision since they each have varying side effects and risks.

    Anyone out there at this point with their MS? Would love feedback on Gilenya and Tysabri. Clinical trial would be interesting too (double blind, double dummy vs. Rebif). 

    Would love to hear from you out there! Hope you're well.

    Thanks!

    Christie
    Truth be told, I am at the same point in treatment you are.  My last MRI showed a new lesion.  We decided to hold a while before the we made another move.  I just called them to set up an early MRI.  I have been having a new symptom.  Tysabri seems to be what my neurologist thinks should be my next step.  I am terrifeid of the side effects.  I still have a little time to decide before the next MRI results.  I wish you the best.
  • what_a_life
    i'm on the trial..think I got the sugar pill n not the real stuff...not seeing much diffence...for me it's every 6 mths n 2 wks after that so 4 times in 1 yr..it takes about a day to get the injections..a few hrs for the injection n a few hrs with the drs n tests. U can get off it anytime u wish. Hope this has helped u out abit...if u have more questions just ask i'll try n be helpful
  • Charlene1
    My neuro discovered new leisions on my brain in Dec. I was on Betaseron. I felt terrible everyday. I start Gilenya on Apr 3. Before i was "approved" to take Gilenya, I had to go to eye dr to get checked for macular edema (sp?). Also, I had to take 2 chix pox shots because a test showed I was not immune even though I had them as a child. The day before I start the Gilenya, I have to go in for EKG. Will have to be monitored for 6 hrs after taking my first dose. I am ready for no more shots!!! No more red polka dots at injection sites!! LOL!!
  • Mizrob
    There are a ton of answers snd the best answer is... you wont know until YOU try it.  Everyone reacts differently. All you can do is try it, if it doesn't work then try something else - today you have choices!!!
    Have been on Avonex and Copaxone weren't great, I still had attacks, active MS.  Betaseron did pretty well for a while until I just couldn't do the injections anymore after several years - needle fatigue!! I usesd tysabri but ended up being allergic to it. Started with Gilenya but had to stop when my psoriasis flared up very badly (had been before Gilenya, UNrelated - by the time my dermatologist and I figured that what we'd been trying wasnt working, switched to methotrexate) and I had to stop gilenya.  For now, forseeable future am taking methotrexate (which actually was used for MS in the past) - is it helping my skin? yes, the MS? who knows
    because of the metho, my options are pretty limited... will say this however, metho is a heck of a lot cheaper than the other "new" (and very expensive) MS drugs...
  • nurcindy
    Mizrob wrote: There are a ton of answers snd the best answer is... you wont know until YOU try it.  Everyone reacts differently. All you can do is try it, if it doesn't work then try something else - today you have choices!!!
    Have been on Avonex and Copaxone weren't great, I still had attacks, active MS.  Betaseron did pretty well for a while until I just couldn't do the injections anymore after several years - needle fatigue!! I usesd tysabri but ended up being allergic to it. Started with Gilenya but had to stop when my psoriasis flared up very badly (had been before Gilenya, UNrelated - by the time my dermatologist and I figured that what we'd been trying wasnt working, switched to methotrexate) and I had to stop gilenya.  For now, forseeable future am taking methotrexate (which actually was used for MS in the past) - is it helping my skin? yes, the MS? who knows
    because of the metho, my options are pretty limited... will say this however, metho is a heck of a lot cheaper than the other "new" (and very expensive) MS drugs...


    Wow, did I come to the right place.  You are absolutely right, everyone reacts differently.

    I have been on BS, Copaxone, Rebif, and Copaxone again.  I started on the DMD's shortly after my dx in 94.  It appears that my Copaxone is no longer effective as my MRI is showing some new lesions.  My Neuro suggested Tysabri and I was a little reluctant to try it due to the fact that I tested JCV+ prior to infusion.  I have had 4 infusions and have not tolerated the the treatment well at all.  In fact, I had a major relapse and it has taken massive steroids to get me back to "almost" baseline again.  So, here I go again.  What do I try next?  

    I have heard so many success stories about this drug, and very few negative reactions.  I was really hopeful that this was going to be the one for me.  I am now waiting to see my neuro to see what other options I may have.  

    If any of you can relate to this and/or have any advice.  I would greatly appreciate it.

  • Lisa_Emrich
    Hi Christie,

    Sorry to hear that it's time for a new med.  As you may remember, I'm not doing a 'traditional' MS drug right now.  I was on copaxone and methotrexate, but switched to Rituxan (for my RA) in 2009.  My neuro and I are unofficially counting Rituxan as my "MS" med for now.

    Rituxan is the older sister of Ocrelizumab.  So far it has been very good for me.  There was another MS blogger who shared her experience with being in the Ocrelizumab trial.  She was doing great until the infusion portion of the trial ended.  She felt that she could tell when her CD-20+ B-cells returned.  I kinda felt the same thing last fall before I had a major relapse (dummy me was putting off an infusion because my RA was mostly doing okay).

    I personally look forward to having lots of my CD-20+ B-cells destroyed.  It makes my body happy. 

    Lisa
  • joynerthedad
    I would love to hear answers on this topic to I am at the same point and do not know what to do.  I have a 8 year old and 1 year old, so the least amount of side effects is what I am looking for.  I do not know what is the best choice.  I would love to hear some feedback also. 

    Tysabri is what my doctor is suggesting but not sure.  I live far away from my family and my husband works a lot so it not like I have help with babysitting.  So I am not sure if that is the best choice. 

    Love to hear feedback

    Hey Shorty.  At this moment, I can not remember if you said you tested positive or negative for the JC virus antibodies.  If you tested positive, I would not do it.  When Alex was 11 and Sam was 8, I was given the option of Tysabri.  I turned it down flat.  My childrens age was a huge factor in my decision.  I told them I wanted something safe...they put me Avonex as it had a long history and the main negative side effect was getting the flu every week.  I think I stumbled onto something on an earlier post...their opinion would weigh heavily in my decision.
  • cgermans
    i'm on the trial..think I got the sugar pill n not the real stuff...not seeing much diffence...for me it's every 6 mths n 2 wks after that so 4 times in 1 yr..it takes about a day to get the injections..a few hrs for the injection n a few hrs with the drs n tests. U can get off it anytime u wish. Hope this has helped u out abit...if u have more questions just ask i'll try n be helpful
    Thanks for the info on the clinical trial, it does help. I hope all is well. Best, Christie
  • cgermans
    I've been on Gilenya since May, so about 10 months.  I was on... Betaseron before that, gee took me a minute to pull that name out of my head.  I like taking the pills, honestly don't have any side effects.  I can't tell you whether it's working or not.  I have all the same problems, but not as bad flairs I guess. My heart didn't stop when I started it and my eyes are fine, I sure don't miss the shots!
    Thanks so much for the reply. Great to hear that you have no side effects on Gilenya. No shots is someting to look forward to, that's for sure! Best, Christie
  • cgermans
    Hi Christie,

    Sorry to hear that it's time for a new med.  As you may remember, I'm not doing a 'traditional' MS drug right now.  I was on copaxone and methotrexate, but switched to Rituxan (for my RA) in 2009.  My neuro and I are unofficially counting Rituxan as my "MS" med for now.

    Rituxan is the older sister of Ocrelizumab.  So far it has been very good for me.  There was another MS blogger who shared her experience with being in the Ocrelizumab trial.  She was doing great until the infusion portion of the trial ended.  She felt that she could tell when her CD-20+ B-cells returned.  I kinda felt the same thing last fall before I had a major relapse (dummy me was putting off an infusion because my RA was mostly doing okay).

    I personally look forward to having lots of my CD-20+ B-cells destroyed.  It makes my body happy. 

    Lisa
    Hi Lisa! Great to hear from you. Yeah, it does suck to start this next round of meds. But, I can handle it and am very close to a decision. I do remember your current med routine and glad you are doing well with Rituxan. I, too, worry about the end of a trial, especially if I do amazing on the drug! Thanks so much for reaching out. Best, Christie
  • cgermans
    My neuro discovered new leisions on my brain in Dec. I was on Betaseron. I felt terrible everyday. I start Gilenya on Apr 3. Before i was "approved" to take Gilenya, I had to go to eye dr to get checked for macular edema (sp?). Also, I had to take 2 chix pox shots because a test showed I was not immune even though I had them as a child. The day before I start the Gilenya, I have to go in for EKG. Will have to be monitored for 6 hrs after taking my first dose. I am ready for no more shots!!! No more red polka dots at injection sites!! LOL!!
    Hi Charlene. I hope the Gilenya makes you feel better than the Betaseron! I'll be thinking of you on the 3rd as you sit with your first dose. That's a long time! I still haven't decided which meds I'm taking but it is so helpful to have everyone stop by here to share their stories. So, thanks and cheers to no more injections! Best, Christie

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