New Tysabri patient

Loobie · Posted: Sat Oct 11, 2008 11:47 am Post subject: New Tysabri patient

Well I'm switching from the Tovaxin thread to this thread now. Background: MS for 7 years. Avonex for first 4. Didn't really progress except in the area of side effects! They just kept getting worse and worse until I couldn't take it anymore. I felt pretty good though and was still very active; running every day, working alot, full social schedule. Then I got into the Tovaxin trial. I went downhill the whole time I was in it (18+ months). That is ABSOLUTELY not blaming Tovaxin for the progression. I think it's more likely that it was just my MS progressing and that Tovaxin simply didn't work on me.

So after deciding I had to wait too long for Campath (Tovaxin wash out period was not know, so they said 6 months since it's in trial) and now I'm starting Tysabri. I have not had my first infusion yet, but signed all the TOUCH paperwork on Tuesday of this week. I'm very excited since I was basically on nothing (nothing that worked anyway) for the last 3 years and have progressed way more than I had for the first four. Once again, probably just the course of MS, but I think Avonex may have helped with that, I just couldn't tolerate it. I'm a 4.5 right now. The brochure is right, you don't want to get to 4 because the time it takes to deal with things get in the way of of working profoundly. When I was still a 2, and even 3, I still had pretty good leg strength, but was going to the bathroom constantly. Still do that, but now the effort to be constantly getting up to go pee and walking around the shop where I work and things like that are really taking their toll on me. I think I could get my leg strength back up IF this crap quits progressing. Plus I'm having to do other things that are very difficult to do at work like cathing. If I just had about an hour of 'flex' time where I could just deal with my stuff, it wouldn't be so bad, but the industry I'm in is fast paced and I'm in probably 4 meetings a day on average.

So I'm excited. I've heard some good stories from people who are receiving Tysabri when I was in getting my Tovaxin. I guess we'll have to wait and see how I do. Wish me luck!
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"When you're in jail, a good friend will be trying to bail you out. A best friend will be in the cell next to you saying, 'Damn, that was fun.'"

Terry · Family Elder Joined: Oct 27, 2007 Posts: 270

Wishing you great luck, Lew.

Terry

robbie · Posted: Sat Oct 11, 2008 4:27 pm Post subject:

good luck man, hope it's good for you.
_________________
~i guess i know i just hate how it sounds~
I see seven towers
But I only see one way out

Loobie · Posted: Sat Oct 11, 2008 8:01 pm Post subject:

Thank you,

I have my fingers crossed. My Dr. said that even though I've had this for seven years, that I'm still a good candidate. He thinks that because my MRI's were unremarkable (no lesions) for so long and had only a very few (I don't remember exactly, but it was only like one or two) on my spine, he thought I might have Devic's. That was also because I had only ON, bladder and bowel stuff, and nothing else for a long while. Then after going off of Avonex, I had lesions about six months later. Maybe that shit does work for some. It just made me so depressed I couldn't handle it. Oh well, there's some good baseball on right now, and I just wanted to say thanks! If it's not by next week, I'll probably start acting like I did around this time last year because I wasn't getting my blood draw for Tovaxin. I need to start drinking again.
_________________
"When you're in jail, a good friend will be trying to bail you out. A best friend will be in the cell next to you saying, 'Damn, that was fun.'"

dreddk · Getting to Know You... Joined: Jan 21, 2007 Posts: 21

Loobie,

Good luck- my wife had her first infusion this week - completely pleasant experience. She was just given a prednisone to reduce odds of an allergic reaction. There are two people who were getting infusions alongside her = one who has been receiving tysabri since the original trial and has not progressed. Interestingly the neuro said several on the study relapsed when it was taken off the market during the pml scare.

I've spent the last year since my wifes first relapse researching the therapys and was actually relieved when the new zealand neuro expert recommended tysabri as its what i would have chosen to take if i was in my wifes position. Downside here is you have to pay through the nose for it.

Anyway good luck!

HarryZ · Posted: Sat Oct 11, 2008 9:49 pm Post subject:

Loobie,

Don't put a lot of emphasis on the number of lesions on your MRI. You can have many lesions and only minor symptoms or just a few lesions and major problems. It's the location of the lesions that is important. There is also very little correlation between lesions and MS symptoms.

It is apparent that your system just didn't like Avonex and it was a wise decision to stop the drug. Hopefully you will tolerate the Tysabri much better and it helps you.

Harry

CureOrBust · Posted: Sun Oct 12, 2008 1:28 am Post subject: Re: New Tysabri patient

First off all, good luck, and I hope its the one for you.

Loobie · Posted: Sun Oct 12, 2008 7:09 am Post subject:

Cure,

Campath is actually what I was "after". And as you noted, I couldn't get in the trial due to wash out. However, me and my Dr. are both on the same page that when it becomes available, I can always stop Tysabri if it's not working. But if it is, I'll just stay on it. One more thing that really made the Campath a non-option besides me not being washed out, is that the trial that I could've gotten in was being weighed against Rebif. So if you weren't getting Campath, you'd be getting Rebif, and I already know that interferons and me don't agree with each other in terms of the side effects, so I really didn't want to take that chance.

Harry,

I do know about lesion load and that they don't directly correlate to disability, but my Dr. was trying to point out that I didn't seem to even have progression in that area for a good while. He is real big on getting his patients to understand that. He was using my dizziness (my least favorite symptom) as an example. He was telling me that you can have one tiny lesion that they have a hard time picking up, and still be knocked hard by vertigo. And on the other hand you can have many, many very noticeable lesions and barely be functionally affected. This is some crazy shit I tell ya'.
_________________
"When you're in jail, a good friend will be trying to bail you out. A best friend will be in the cell next to you saying, 'Damn, that was fun.'"

Lyon · Posted: Sun Oct 12, 2008 9:19 am Post subject: NEW TYSABRI PATIENT

Lew,

I don't see how there can be any doubt that you're making the wisest choice within your means at this time.

Right now it's all about minimizing damage as much as possible for as long as possible and at this moment, for you, it seems that Tysabri is the quickest, surest, safest option available to you.

I know you've talked to ewizabeth along the way but she's already dealt with concerns that you are probably having right now.

Bob
_________________
Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.

Loobie · Posted: Sun Oct 12, 2008 9:51 am Post subject:

Bob,

That makes me feel better (even coming from you, JK Laughing

). I am torn. I had a vendor in on Friday that I've never dealt with before. He saw my cane and asked and I told him I had MS. His eyes got big and he was like "so does my wife!". Well she's had it for two years and (you can tell this guy pays attention) she is "doing an every three month IV thing". I said all the IV drugs and he just said he would let me know. She's probably taking Rituxan. He is from Dayton, but drives his wife to the OSU MS center and I think they are doing that there. At any rate, you are right in that it has been a difficult time deciding with so many choices right now in new drugs. However, with Rituxan and Campath being off label and in trial, I thought this to be the best route since I can't get into JH right now. We all know that's what I wanted, but I have to stop the bleeding if possible since that's like nine months to a year out, and then I don't even know if I'll get accepted.

The point I was going to make about my visit with my vendor on Friday is that he told me that his wife has already retired and is on full SSDI. He also said you could never even tell she has MS. That sort of pissed me off. She worked for the board of Mental retardation and is thus a government employee. Well her neuro. told her that she should 'de-stress' since working with mentally retarded people can get pretty physically stressful. She got her full SSDI right away and she doesn't even need it since she's been on treatments he told me. I don't know why that pissed me off, you know good for her. I guess since I know that there have been times recently where everything falls apart in a day, you piss your pants and have to go home; where I have thought about it, but understand the uphill battle I will have to fight. I guess I should just go get a gov't job and let them tell me I should retire and get my benefits without a fight. Sheesh, I really wish there weren't so many people on the government tit that just don't want to work and it wouldn't be so hard for people who have paid in since the age of 15 and now really need it. You just have to love entitlement programs where you can just choose to not work and still get them. Oh well, I'm not going to get pissed on football day!! Think happy thoughts.........
_________________
"When you're in jail, a good friend will be trying to bail you out. A best friend will be in the cell next to you saying, 'Damn, that was fun.'"

Lyon · Posted: Sun Oct 12, 2008 10:38 am Post subject:

Loobie · Posted: Sun Oct 12, 2008 12:39 pm Post subject:

You're right Bob,

Thanks for the reality check. I'm quite sure there is more to the story. Hell, he didn't even know what she was taking, so maybe you're right about the info. being a little 'brown'!
_________________
"When you're in jail, a good friend will be trying to bail you out. A best friend will be in the cell next to you saying, 'Damn, that was fun.'"

Terry · Family Elder Joined: Oct 27, 2007 Posts: 270

Lew,
You are a fighter.
I know you'll keep plugging along until you can't anymore. Hopefully that day is far far away. You are not one who would lay down the sword just because the war "might" get tough. Some folks do that, but I'll bet that is a life-long pattern, not something new since MS dx.
Your new battle cry....' TYSABRI" I like the sound of that.
Terry

Loobie · Posted: Sun Oct 12, 2008 4:03 pm Post subject:

I don't even have to trade in all those sweatshirts I had embroidered with a "T" for tovaxin! That stuff turned out to be the Bengals for me!! Aren't they NOT fun to watch?
_________________
"When you're in jail, a good friend will be trying to bail you out. A best friend will be in the cell next to you saying, 'Damn, that was fun.'"

Terry · Family Elder Joined: Oct 27, 2007 Posts: 270

Who are the Bengals?

Live....from a Cincinnati neighborhood near you....

Laughing

Terry