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i have been diagnosed with ms for about 15 years. i have been on steroids, avonex, betaseron, copaxone, novantrone and now tysabri. i was driving and mobile until about a year ago, and the ride downhill has been swift and rough. very hard to deal with emotionally and physically. i'm putting a lot of hope in tysabri, maybe too much. i've been reading all this good news and while i am so happy to hear the positive, i can't help thinking, what about me? is tysabri going to fail, too?
Joined: Feb 10, 2005 Posts: 309 Location: grenada, ms
Posted: Wed Nov 29, 2006 4:07 pm Post subject:
I would think those with limited income level have most of the trouble getting TY. I have a friend whose DR told him that he would have to get some kind of Medicare supplement, he has A, B, and D, before he would try to get him the medicine. ON THE OTHER HAND, the same DR has another patient that has blue cross blue shield with very little disability, and he couldn't put him on it fast enough. Sadly, I am glad Gary is out of the race to get Ty. I fear we would hit the same obstacles.
Joined: Aug 10, 2006 Posts: 39 Location: Hyde Park, NY
Posted: Wed Nov 29, 2006 5:37 pm Post subject:
Ty is a monoclonal antibody. To put it simply, it's supposed to keep you from getting worse fast. Slow down the progression. No where are claims it makes you better. You don't reach a steady state(have the drug working in your system all the time) until between months 4-6.
Getting better is a bonus! Hope is where it's at. To have something where before we had nothing, is a giant step. One infusion is not giving it a chance to work. It's only supposed to slow the progression. Be your own advocate. Work it out. Be informed. Read. I'm finding that's what we have plenty of, time.
Joined: Aug 14, 2006 Posts: 103 Location: So. Calif.
Posted: Wed Nov 29, 2006 9:58 pm Post subject:
Hi noreen, Pete, Amelia, all...
Pete, that's terrific! A positive attitude equals possibilities..woohoo!
Amelia, hi hi hi! How is Gary doing on Cellcept?...I think you mentioned he started on that, and not Rituxan (whew!).
Hi noreen! I have had MS for 30+years, am w/c bound, SPMS with relapses, and have had 2 infusions of Tysabri...from the reports received from our website http://www.mspatientsforchoice.org/progress.htm, it appears that the more disabilities one has, the more Tysabri infusions it will probably take before you start to see improvements.
Personally speaking, I don't expect to see any "marked" improvements until my 4th or 5th infusion (I cont. to hope for earlier rather than later, but I'm realistic too), and if it takes longer, that's okay too as I haven't had any disease progression or relapses since 10/16/06, so I'll take that with the slight improvements I've had so far! Don't give up hope noreen, it might be waiting for you with your very next infusion...,
Lauren _________________ Feel free to visit my Blog and leave me a comment, I'd love to hear from you!
lauren,
i wish my attitude was as good as yours, but i am having a hard time dealing with the progression of my ms this past year.
noreen
p.s. and what it is doing to my family.
Joined: Aug 14, 2006 Posts: 103 Location: So. Calif.
Posted: Wed Nov 29, 2006 10:59 pm Post subject:
noreen,
disease progression sux big time, oops and like you, my disease has progressed rapidly since 6/5/05, due to increased relapses, so I do understand, honest I do.
But I hold onto the hope Tysabri brings, as I've learned over many years that negative = nothing and positive = possibilities...the choice is not all that hard for me and if my family (what's left of them), chooses to be negative and not support me in my choice of therapies and remaining positive in the face negativism, too bad so sad, their loss - not mine
Take care noreen...if the bedbugs bite, bite back!
Lauren _________________ Feel free to visit my Blog and leave me a comment, I'd love to hear from you!
Joined: Feb 10, 2005 Posts: 309 Location: grenada, ms
Posted: Thu Nov 30, 2006 10:26 am Post subject:
Lauren,
Gary started Cellcept on the low dose side, 500mg a day. Cellcept is know for being slow to act, so we really did not expect much. BUT IMPROVEMENTS ARE HAPPENING! They are slight. Most people would not notice, but as you know, when you deal day in and day out with these diseses, you notice EVERYTHING. His spasiticity is lessening. Not gone, but greatly diminished. Hard to tell if Cellcept is the one behind this, since he is also on a Decadron shot, 10mg, twice a month. He has had only 2 of that dose, but has some 8 mg monthly before that. His eye sight is fluxuating to the good. His walking is slightly better, more fluid movements. Getting up out of a chair, getting on his riding lawnmower, his personal WC, are all better. He has a more relaxed look about him. Gary too was beginning a downward slide. His attacks, from Devic's, was not bad, dibilitating kind, but they were constant. And constant isn't good for either of these diseases. HOPE. It's the only thing all of us have. Gary's Neuro told him that he would not get better. They could just keep him from getting worse, maybe. Devic's can turn very UGLY. More so than MS. Gary quit listening to what Drs said he would have or do or not have or not do. We just live with the hope that things will get better. He works hard to make that happen. THERAPY!!!!! Not just when the therapist comes by. Not just 30 minutes a day. ALL DAY EVERYDAY!!!!! You must fight this. If all you can do is move one finger, then move that finger unitl you can't, rest and do it all over again. That is what has kept Gary going. After one bad attack, he was paralyzed from the upper chest down for a while, he was getting a little better, but still WC bound. I wheeled him to our art/frame shop. There was a tall table there. He would pull his self up to standing, hold onto the table and count to 10. Rest and do it again until he had to rest for a longer period. Many times he did not make it to 10 before he fell back down in the chair. He did this all day every day until he was back up and going.
JMO, I don't believe DRs when they tell you on the onset of an attack that you should go home and crawl in bed for a few days for some rest. I think you will find that you will be there longer than a few days. Rest, but also fight that attack. It helped Gary and Devic's is not that different than a MS attack, except it can be WORSE!
my family is very supportive. my husband does everything for me, but i know he is beaten down. as we all know, caregivers suffer immensely. i also have a 16-year-old who is completely unnerved by my downward spiral. my family definitely is not the problem. ms is the problem.
Joined: Feb 10, 2005 Posts: 309 Location: grenada, ms
Posted: Thu Nov 30, 2006 11:10 am Post subject:
My daughter grew up with Gary's MS / Devic's. There was time in her early to mid teen years that she became angered by it all. She was civil about it and usually not around Gary, although their relationship was not the close one it had been during that time. She voiced one day her concerns to me, angrily I might add. She was going on about what SHE was doing without. I let her vent for a while and then I spoke up. I told her that atleast she would grow up and leave. I was here forever. Then I nicely told her about my love for Gary and how I too gave up things because of all of this. I then told her that life was not fair and she would never find it to be fair. Time made it better. By the time she entered her late teens and until now, she found a way that she could help. She took track and knew of stretching exercises. She would stretch Gary's legs for him at night. That helped him and me. She was finding a "place" in our home. Maybe that is what you are dealing with. And don't think too bad about your caregiver being without. Although we would love to change the situation, we will stand firm for you. It's hard sometimes and I do vent with close friends sometimes, but I know that Gary would have done all of this for me, if the tables had been turned.
amelia,
my son is still in the anger stage. i know it will change, but right now, it seems like it will never end. i'm not the mother he once had and wants again. i just hope he can come to terms with it. (hey, i haven't even come to terms with it.)
noreen
Joined: Feb 10, 2005 Posts: 309 Location: grenada, ms
Posted: Thu Nov 30, 2006 11:50 am Post subject:
Noreen,
As he grows up, he will deal with it better. Brittany never remembered her dad b/4 the disease. He was not the daddy everyone else had, and I was not the mother like everyone either. My focus was trying to tend to him and her. Many times, she was pushed aside. She saw things kids should never see. But I don't think we are much different than people who deal with cancer or anything else that invades the home and takes over. Let him vent, legally and within boundaries. If you are a church goer and he is close to the pastor or someone in the church, offer to him to talk to them. Let him know that he can talk to you or your husband, and say what he really feels. That may be hurtful, but he is already feeling that and hurting. He probably would NEVER do anything to hurt your or disrespect you.
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and like you, my disease has progressed rapidly since 6/5/05, due to increased relapses, so 
