Oh, and what about Tysabri?

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lika
New Member


Date Joined Jan 2011
Total Posts : 9
   Posted 1/15/2011 9:46 PM (GMT -6)   
Hi,
Is anyone on Tysabri.  Does anyone have an opinion on it.  I know there is an increased risk of PML but my husband came back negative for JC virus antibodies, so it is much less of a concern for him (1:3000).  There are just a lot of questions, limited time for neurologists to answer them, and all this began just 6 weeks ago.  I never post anything on anything but I think I need something more than my own thoughts and google. 
Thank You

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 1/16/2011 10:01 AM (GMT -6)   
I know you are frantic for answers.  Obviously we are happy to have you here but you may want to post on a more active board.  "MS World" is a very huge board with MS only on it.  There are tons of people that post there and I am sure you would get more responses.  This board is less used and so a more personal type place. 
 
Tysabri is pretty effective except that there is the risk of that PML.  Most of the disease modifying drugs (Copaxone, Rebif, Betaseron, Avonex) at best will slow down progression 30-40%.  I have heard that tysabri can slow down the disease by as much as nearly 70%.  You just have to watch carefully for that PML.
 
If your neurologist is not spending adequate time with you, ask him for more time.  If he can't make more time for you then consider a second opinion with another neurologist and let that one know you need enough attention to understand fully what is happening with your husband.   
 
 

lika
New Member


Date Joined Jan 2011
Total Posts : 9
   Posted 1/16/2011 10:22 AM (GMT -6)   
Thanks Gretchen,
I am overwhelmed and a big forum sounds even tougher to navigate.  I appreciate someone responding though.  The Doc's are great, we live in a rural area and there is limited medical care.  Our closest neurologist is actually in another state, 1 hour drive,  and our neuro at the MS center is an 8 hour drive.  This is why the time has been short.  They have treated us very well though.  As it is a holoday weekend, it is not the best time for questions!!  Also this has been moving so fast, even though I write everything down there is always more to ask!
 
  I read somewhere that you once lost your vision.  My husband had his first presentation when he woke with 6th cranial nerve palsy.  His eye has started moving a bit but he still wears a patch.  Sounds like this might resolve as it did with you.  That would be great.  Two weeks later he lost more than half his strength on the right side of his body.  Quick flight to the city and 5 days of home solumedrol therapy, that is now better.
 
On another note, did you see my post about MRI lesions?  He has 6 new active lesions in the last month.  Is this typical?  Two are on cervical spine at C2.  He has white and grey matter lesions, corpus involvement and a new frontal lobe lesion.
 
Is his personality going to change?  Is he really expected to have a short live with
Marburg's?  I know there are no real answers when it comes to MS, but it seems surreal.  He is active, healthy, walks 10 miles a day, is a professional with a master's degree, eats very well and all organic, and he was jhust 32 6 weeks ago.  It just came out of nowhere.  This is the guy who had a broken wrist and it took him 6 weeks to get an x-ray because he was "fine".  Luckily he did not ignore these symptoms and was told within 48 hours of onset that it was probably MS.  Glad we didn't have the tennis effect with diagnosing.
 
I dont know how to be the best person for him.  This is hard for me too.  We have been together 9 years and married 2.  We were ready to start a family.  I feel like 2 people got a diagnosis 6 weeks ago and I feel selfish for thinking I need support too or that this is my issue as well, after all I do not have MS.  I could go on.....maybe I will check out the other forum but I think it will be too intimidating.
Caio
 
 

Tertle
Regular Member


Date Joined Jul 2007
Total Posts : 108
   Posted 1/16/2011 11:12 AM (GMT -6)   
Hi Lika, I am a 32 year old male with MS also. I have been on Ty now for almost 2 years, and have seen great improvements. Although as Gretchen did say, the PML is always a scare, actually a real scary one. It weighs on my mind every day, and I get Google alerts on Ty that also probably don't make it any easier, but at least I get notified about new cases of PML and the unfortunate deaths from it, which keep rising every month. I can say though that I am very happy I made the decision to go on it. And it sounds like a good option for your husband.

As far as you feeling like you are going through it too, in reality you are. I was married for almost 6 years, two of those years I had MS and just a year ago, my ex-wife decided she wanted to screw her old boyfriend and forget about her two children and I. Well if I can stop that from happening to another person, I will try my hardest. You have been with him longer than we were, and yea his personality is gonna change, along with a long list of other things also. My advice would be to go to any kind of support meetings for MS that you can find, try to get him on Tysabri and to stick by the one you love.......because it really sucks doing it alone..
Good luck.
-Tertle(Andy)

lika
New Member


Date Joined Jan 2011
Total Posts : 9
   Posted 1/16/2011 1:10 PM (GMT -6)   
Andy,
Thanks for responding.  That is terrible about your wife.  I am so sorry.  I have been waiting 9 years to start a family with with my husband so I could not imagine someone doing that.  I plan on sticking by him.  We waited 7 1/2 years to get married. 
 
Unfortunately there is not a whole lot of local support here.  We live in a rural area and drive 8 hours to our Neuro (we also have one that is 1 hour away in another state).  That said, we have only been to the MS center once, hospitalized in another state once, and do MRI's locally with a good machine.  This has all been in just the last 6 weeks.  Previously he was very healthy.
 
I agree that Tysabri is clinically impressive, less the increased risk of PML.  That must be scary for you everyday.  My husband is JC virus antibody negative, which is believed to be a contributing factor to PML cases while on Tysabri.  Biogen already accepted him, just waiting on insurance and hope to start it at the end of the month.
 
He is of course dealing with this very differently than I am.  None the less I think it is hard on both of us.  We got very lucky however, had primary care tell him he was fine and the next day an opthomologist tell him he had 6th cranial nerve palsy and probable MS.  This was less than 48 hours from onset of symptoms.  It has been a wild ride and headfull of learning ever since.
 
I hope you are doing well and appreciate you writing to me.  I guess it feels good to have someone know what I feel or my husband is feeling.  Or at least know this is not supposed to be easy. I will do whatever i can to best advocate for my best friend.
thank you
jessica (lika)

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 1/16/2011 5:32 PM (GMT -6)   
Jessica,
 
Marburgs is indeed a very serious diagnosis with the potential for being fatal, however, you must maintain hope.  They are making constant strides on this and your husband may well benefit. 
 
I cannot believe his primary care doctor thought he was fine with one eye not working!!!  WOW! 
 
I am glad he was diagnosed right away but this also indicates the severity of what is going on.  I am praying for both of you. 
 
When do you see the doctor next?

lika
New Member


Date Joined Jan 2011
Total Posts : 9
   Posted 1/16/2011 6:45 PM (GMT -6)   
Gretchen,
Thank you for the positive reminder.  I believe Marburg's does not carry the same sentence it used to.  In addition my husband is healthy, fit, active, mentally stimulated on a regular basis, and has no other health conditions.  I believe this contributes to his asymptomatic disease progression up until this point.  I know he can beat any odds, he always does!
Yes, apparently maybe a blessing is that we had such a quick diagnosis.
 
I believe one blessing was his fast diagnosis but was unaware that it is quite uncommon to be diagnosed so rapidly.  From what I understand (and I most importantly understand the disease is unpredictable and different for each individual) it is quite uncommon to receive such conclusive reults so fast but he had all the classics, Dawson's fingers, oligoclonal bands, etc.  On the other hand, as you mentioned, this scares me as a woman who understands a bit about medicine and the amount of disease burden required to make an instant diagnosis is scary to me.
 
I too can not believe the GP.  Makes me very angry, not to mention they have not even called to check in or follow up!  I will do everything in my power to convince him not to go there again.  He is much more forgiving and relaxed about most things than I am.  Still, seems like a BIG miss to me!  Best wishes to you.  I have tried MSworld and appreciate the ammount of info but seem to prefer the easier to navigate, smaller forum here.  I will continue to try both and see if they are a positive resource in this journey.  Always appreciate any information anyone gives me. 
Thank you again, 
Jessica
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