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Old 07-07-2009, 06:55 AM   #1
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joetee316 HB User
Tysabri

Hi all! I'm now to this board. It's my first time posting and I really just need a forum/outlet to discuss my "issues" and get some feedback from others. I am a 35 year old male who was diagnosed with MS in the summer of 2004. When I first got the news my world was destroyed. I thought it was "life threatening" and upon further research I saw it wasn't. I was able to get by with my condition for the first few years but lately I'm starting to get nervous.... real nervous. My walking has deteriorated and my neurologist suggested about going off Betaseron and maybe trying Tysabri. I have active lesions and I not so happy with the Betaseron medication. If I have active lesions and my walking has gotten worse I think I need to do something to subside this activity. But Tysabri firghtens me. I've read about all the deaths and my neurologist says he only keep me on it for a year maximum. Are there any other alternate medications that work well? I'm also thinking I should go to get a second opinion from another MS center/neurologist. Anybody have any reccommendations in the north-central NJ area? Should I start eating healthy too? Does that work?

Please help. I know, I know! I have so many questions but I am so stressed out.

 
Old 07-07-2009, 09:12 AM   #2
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Re: Tysabri

Hello, joetee.

If you have information about Tysabri I'm sure you know the possible risks. Using Tysabri or one of the other MS treatments are a personal choice. You will find good and bad on just about all of them.

You can choose to stay on a MS treatment for just a short time, long time or not at all.

There are no miracles in any of the treatments, even Tysabri.

You will find people who swear by Tysabri and are willing to take it even with the Black Box warning and the risk of PML and others who don't want to take the risk. Again, it's about personal choice.

Alternatives?

Have you seen a Physical Therapist (PT) or tried exercising...consistantly? Have you seen an Occupation Therapist (OT)?

Mobility aids (cane, walker, wheelchair/scooter) can be a wonderful thing, they allow you to be involved in life.

Living with MS is about adapting and adjusting when or if needed.

The Disease Modifying Drugs (Betaseron, Copaxone, Rebif, Avonex, Tysabri) are to HOPEFULLY slow progression and to HOPEFULLY decrease the amount and severity of relapses. These drugs do not work that way for everyone, some still progress.

Unfortunately, MS is known as a progressive disease without a cure and in my opinion...mediocre treatments

If you want a second opinion or possibly a different view from a different neuro then by all means see a new neuro.
__________________
Dx RRMS 1985
5/9/13/ Secondary Progressive WITHOUT Progression

Last edited by Snoopy61; 07-07-2009 at 09:13 AM.

 
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Old 07-07-2009, 05:23 PM   #3
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MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Tysabri

Hi Joe. I am also in central/northern NJ and have lots of info for you if you are interested...
You asked about Tysabri, and I agree that there are pros and cons to it, however there are so many other drugs besides going that route, which might help you. Youre already taking an interferon, but not the strongest one. 2 others have been released since Betaseron was released. The next strongest is Avonex, which is an intramusclular drug injected once a week.....then, stronger yet is Rebif (my drug) which is subcutaneous and injected 3 times a week....Ive been on it for almost 4 years now and happen to think its saving me from progression.

What Snoopy said is true- not all the drugs work for everyone. For me, Rebif is keeping my progression at bay, I have not had any new lesions, and I was dx about 4 years ago, with over 50 lesions in my brain! I was terrified. I was also 36 years old when I was dx...having been on this drug almost since the beginning, I only have Copaxone in my list of things I tried, and that one almost killed me due to an allergic reaction. Rebif is good to me and takes absolutely no down time in my world to do..

I do have some names for you, but it would depend on how far you want to travel. Check out Dr. Manish Viradia, Flemington, NJ - a regular Neuro, who happens to have an enormous MS practice and a fellowship in MS- he also happens to have great bedside manner!! Dr Viradia is an expert with Tysabri- There is a Tysabri center at the hospital where he works out of and he does have several patients on the drug- he is quite pleased with their progress and doesnt seem to have any real issues with putting patients on it, however he is very closely monitoring them, which is the key. Like all drugs, there are pros and cons....my personal opinion is I wouldnt go "there" to Tysabri, until I had exhausted all other options.
Then, one of the best known MS Specialists on the east coast is in New Brunswick NJ- his name is Dr. Sulhayl Dhib-Jalbut, and he is at Robert Wood Johnson University Hospital. Board rules forbid me to give you more information then that, but youll find them if you look for them. I use both and think very highly of both of them.

If you want more info from me, feel free to get in touch....its a scary place, the world of MS; however this board will help you to feel connected and show you that there are plenty of us living with it and living perfectly normal lives.

Take good care..
Nikki
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Last edited by MSNik; 07-07-2009 at 05:30 PM.

 
Old 07-07-2009, 07:30 PM   #4
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Re: Tysabri

I try to follow the Swank Diet. I have never been on meds.

If your walking is deteriorating, you might consider a part-time power chair. I use a power chair around the house about 90% of the time. In the yard I have a zero turn mower that only requires my hands. My truck is hand control operated. As my last back up, I have an English Mastiff Service Dog and my $8 hickory cane from a drug store.

Exercise to keep your muscle memory alive is important. Stretching works. Last summer my left leg use plummeted. I have been using a passive exercycle since late December. It has helped and it was recommended to me by my neurologist. At my last appointment, except for my left leg and my hands, my neurologist told me she had never seen me healthier than now.

Swimming pool therapy is good too, but be careful of the water temperatures.

MS is only scary if you live in fear. I do not like to dwell on myself; I find that doing for others is the only meds I need. October 2009 will be my 27th anniversary of my diagnosis (32nd year since my first symptom). There have been points in my disease progression that I was ready for the Lord to take me home. But He had more for me to do. There is no guarantee in life except death. We are all going to die someday, but MS need not be a factor if I can help it.

Stay positive and remember, the invitation to the pity party should never be answered!!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
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Eternally blessed and eternally optimistic!<><

 
Old 07-11-2009, 11:34 AM   #5
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jk48 HB User
Re: Tysabri

Hello
I have been on Rebif for 6 years now and have had multiple new lesions show up on my MRI. My doctor has suggested next year if there are more she would like to put me on Tysabri. I am terrified as well. I really want to feel normal and am almost to the point of saying "Ok let's do it" but I have read so much bad stuff about tysabri. I am 38 year old female whose main problems with MS are my vision and I am dizzy ALL the time and always off balance like I am drunk. Of course I am tired all the time and have little energy but still live a pretty good life. I am still able to drive and work in a great career but I am really scared if I dont do something that wont last long. They say that stress makes symptoms come on but how are we supposed to not stress with this stupid disease. I would love to hear if you switch to Tysabri and more of your thoughts on the drug. One good thing about it is that I wouldnt have injections 3X a week. Thats a plus.

 
Old 07-12-2009, 05:04 AM   #6
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joetee316 HB User
Re: Tysabri

So after meeting with my neurologist on Thursday we decided to switch from Betaseron to Copaxone for 6 months. After 6 months, I'll take an MRI and see if there have been any changes. Hoping for the best so that's where I stand. My other option was Tysabri (which I wanted no part of) or being in a Cladribine study where I may receive the placebo or the actual drug. I said no thanks to that option either. Not happy about daily injections but the doctors at my hospital seem to think that Copaxone is more effective than Betaseron.

 
Old 07-12-2009, 03:41 PM   #7
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jk48 HB User
Smile Re: Tysabri

Good luck with your med switch. keep us posted on how it goes. i think my doctor will be changing me soon as well. I will keep my fingers crossed that it works out for you.

 
Old 07-23-2009, 11:26 AM   #8
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Re: Tysabri

I became immune to beta seron, so my neurologist suggested Copaxone, as he says they work at totally opposite ends of the spectrum... He himself is really against using Tsybari unless you are just plain out of options. I actually like the Copaxone since it's given daily. I found that I forgot doses of the beta seron because it wasn't "daily" so I find it a lot easier now. You have a lot of options other than tsybari, so I suggest you explore some of them first.

 
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