Tysabri info

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

Postby HarryZ » Sun Feb 13, 2005 12:16 pm

Amelia,

Sounds like Gary has had his fair share of problems and then some with the MS. I'm wondering if the injuries that he suffered combined with the MS has made life that much more a struggle for him.

Prior to breaking her leg almost 4 years ago, Marg was able to walk with a roller walker and she did not suffer at all from any leg spasms. Then, the day after they placed the cast on her leg (broken in 3 places) the severe spasms started. And despite all the therapy she has received, they continue to be a painful burden to her. I'm not sure how those bad spasms started so quickly after the leg break but they were obviously related to the injury. Nobody has been able to tell us why this happened and why so quickly. Having an injury is bad enough....having one and having MS at the same time just seems to compound the problem.

Take care.

Harry
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Postby amelia » Mon Feb 14, 2005 8:50 am

I might can help you some. Gary has had leg spasms bad. His leg, both at different times, will lift up in the air when he is sitting, jump around and then slowly go back down. In bed, I know not to even get near them legs. Anyway, he has had moderate success with a small amount of red wine, about 4 oz before bedtime. It does work and usually the cheaper wine, like Mogan David works best. He says tastes better too. Is Marg your wife with MS? What treatment has she been on, how long?
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Postby HarryZ » Mon Feb 14, 2005 9:22 am

Amelia,

"amelia"]I might can help you some. Gary has had leg spasms bad. His leg, both at different times, will lift up in the air when he is sitting, jump around and then slowly go back down. In bed, I know not to even get near them legs. Anyway, he has had moderate success with a small amount of red wine, about 4 oz before bedtime. It does work and usually the cheaper wine, like Mogan David works best. He says tastes better too. Is Marg your wife with MS? What treatment has she been on, how long?


Thanks for the tip about the red wine....you can be sure that Marg will try it!!

Yes, Marg has had MS since 1971. After the initial serious attack, she went 20 years without any symptoms or medications. She now has SPMS and started on Prokarin in 2000 and LDN in 2001. Her SPMS has not progressed since she has been on these drugs. She unfortunately broke her leg in March 2001 and that's when the severe spasms started.

Harry
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Postby amelia » Mon Feb 14, 2005 9:35 am

Hope the wine works. It has for Gary. He tried Bacolfen, but for a couple of years, he couldn't take it anymore. Made him so weak with smallest dose possible. I read where leg spasm in parapelgics can be caused from lack of calcium. Pills don't do anything but stop up the plumbing, if you know what I mean. We found a place that sells liquid gel caps of Calcium, Magnisium, and Vita D. All that has to be together to work. When we get it and try it, I'll let you know. We realize now with Gary that he had MS in the right eye, the welding accident one, before we got married 20+ years ago. Took a neuro optimologists to expalin that you don't burn the optic nerve when welding. Been to many opts and all said it WAS from welding. When the Neuro Opt said that, it all made sense. Is Marge RRMS still?
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Postby HarryZ » Mon Feb 14, 2005 10:38 am

Amelia,

Marg has been taking the Calcium/Magnesium tablets for 4 1/2 years now because it is a requirement if one is using Prokarin.

Marg's MS is SPMS and has been since 1996. But it hasn't progressed since starting on Prokarin. It's that broken leg and resulting leg spasms that have been the BIG problem!

Harry
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Postby amelia » Mon Feb 14, 2005 11:05 am

Oh well. Maybe the wine will work. Don't hurt to try. Gary's spasms have been getting worse and more constant the past couple of years. We try a lot of herbs and stuff. He is looking to get on the Tysabri, but it may take a while. He only has Medicare and we have not heard how that payment is going to go down. Everyone we have heard that is on it, has regular insurance. It get so dad blamed frustrating to be broke and have a dengenerative disease! :evil:
So much would help Gary throughout the house and such. Found out that we are TOO rich for the $600 benefit on the Medicare Prescript plan. My little business, and I do mean little, kicks it out. They take the GROSS that my business gets, not the NET. DUMB!!!
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MS TREATMENT MAY HALT DISEASE !

Postby better2gether » Mon Feb 14, 2005 1:21 pm

.
MS TREATMENT MAY HALT DISEASE !

The drug Tysabri may help prevent new brain damage from developing in patients with multiple sclerosis, neurologists say. In the clinical trials, the development of new lesions in the brain ... was controlled in almost 90 percent of all cases, says Dr. Victor Rivera, medical director of the Maxine Mesinger Multiple Sclerosis Clinic at Baylor College of Medicine in Houston and The Methodist Hospital.

None of the patients has had any relapse or attack since we started the trial. Tysabri, approved in November for certain multiple sclerosis patients, appears effective, fast-acting and safe for the relapsing forms of the degenerative disease, Rivera says. Tysabri is made by the trial's sponsor, pharmaceutical company Biogen Idec. The drug is being tested in an international study.


http://www.rednova.com/news/display/?id=127411
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Benefit from Tysabri

Postby better2gether » Wed Feb 16, 2005 9:15 am

HarryZ wrote:Eric,

I certainly share your concern about just how much Tysabri will benefit MS patients.

Harry


Every day I read many comments from MS patients that benefit from Tysabri.
This is a comment from yesterday :

" My Tysabri diary day 42

All in all I'm feeling much better these days than I did prior to getting my first infusion. I am seeing more of an image and color in my bad eye. Now that that nerve tissue is not under attack I'm hoping my body can better repair some of the previous damage.

I am experiencing none of the side effects listed on the label for Tysabri. The depressing poor side-effects of my previous ABCR regimen are completely gone. I am not feeling any unusual side effects other than a very welcome euphoria of not being on any outmoded ABCR drug. Having been on Betaseron the longest time and Avonex for one month in 10 years, welcomes a very nice feeling of not being trapped in the mood depressiing monotonous cycle that ABCRs added to one MSers battle with MS.

Can you imagine being treated with a drug that barely suppressed the advancement of one's disease while by itself added cyclic misery to one's quality of life on a daily or weekly schedule? It does not surprise me that there are many more MSers who got fed up with the ABCRs along the way and just gave up on them altogether. They lost hope. Although there is some clinical evidence that the ABCRs had slowed our insidious disease, there was very little evidence that the ABCRs had prevented a relapse or new exacerbation in the majority of medicated MSers taking ABCRs in the past.

Now that I'm much further along into the broad spectrum of the primary response stage of Tysabri's anticipated effectiveness, I'm having a hard time right now trying to decide if the ABCRs had added undesirable side effects that made my previous battle with the MS that much harder to deal with in the past. If that statement is true, I don't see how any of the older ABCRs have a snowball's chance in hell of remaining choice medications for at least 94% of the worlds diagnosed MSers.

As a current Tysabri patient and having lost a once constant fear of my known, slowly advancing MS, I currently feel much better and stronger than I did in any of the few good days I may have experienced in the previous 10 years. Looking forward to Ty #3 in 18 days without any Benadryl premed. "
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Re: Benefit from Tysabri

Postby HarryZ » Wed Feb 16, 2005 10:55 am

Better,

It is going to be some time yet before we get a really good picture of just how Tysabri is going to benefit MS patients.

I find it interesting, though, the kind of comments that we are starting to see from CRAB patients and their doctors. Not many months ago, the NMSS, the CRAB drug makers and many docs insisted that the sooner the MS patients started on a CRAB, the better off they would be. We have "scientific proof" that these drugs are of benefit to MS patients.

But what are we hearing now since Tysabri has entered the picture. The CRABs are hard to take, they have a lot of nasty side effects, you can feel constantly sick on them, they don't do much for your MS, etc etc. And from the same people who stated that anyone who had bad things to say about the CRABs, didn't know what they were talking about!!

For the sake of the MS patient, I hope the same scenario doesn't happen with Tysabri.

Harry
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Postby amelia » Wed Feb 16, 2005 12:13 pm

I went to the NMSS site the other day and was surprised that they really don't have much about Tysabri on their site, except that is has been approved. I get frusterated sometimes with them because they don't update their site. Glad to have found this one, as I love to read what is going on with other MSers. Gary has had an unusual bout with MS and it is good to read from other people that are similar. In town here, not many are like him. Of course, I know this disease is crazy enough that no 2 people are the same.
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Postby HarryZ » Wed Feb 16, 2005 2:15 pm

Amelia,

It's not surprising that the NMSS doesn't have much to say about Tysabri as yet. There is very little information available about this drug because the data from the two year trials hasn't been published as yet.

Also, if you were to check Medline, the US govt authority on drugs and their side-effects, you won't even find Tysabri listed as yet....for the very same reason.

It will be a number of months yet before these people will have the ability to update their information.

Harry
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Postby amelia » Wed Feb 16, 2005 3:56 pm

I'm not knocking the NMSS site. I know when Tysabri is published there and most elsewhere, it will say the same pretty much that is out there now. That is why I like to hear from the real MSers. I know some feel better and some don't feel any different. But you know, you can read what everyone has to say. That is what I like about here. I have hope for a cure as I am sure many of you all do. I don't dwell on it as much as when Gary was first diagnosised. But I have hope. Has Marg tried that wine yet?
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Postby HarryZ » Wed Feb 16, 2005 6:24 pm

Amelia,

Yes, Marg tried the wine the first night I read your message. Her legs started to jump a bit about 8 at night while watching tv. She sipped on some wine and the jumping stopped by the time she went to bed. However, the jumpting started again around 430 in the morning.

On the weekend, she didn't have any wine and the spasms were very
severe during the night. Then last night, she had nothing and slept 6 hours without a twitch! Totally perplexing disease!!!

Harry
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Postby amelia » Thu Feb 17, 2005 8:56 am

Yeah, Gary said his starts back about 5 or 6 in the morning. I'm afraid if someone saw a glass of wine by someone's bed at night, they might think you have a bit of a drinking problem. LOL At least she go some restful sleep though.
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Re: MS TREATMENT MAY HALT DISEASE !

Postby bebe » Thu Feb 17, 2005 8:45 pm

better2gether wrote:.
MS TREATMENT MAY HALT DISEASE !

The drug Tysabri may help prevent new brain damage from developing in patients with multiple sclerosis, neurologists say. In the clinical trials, the development of new lesions in the brain ... was controlled in almost 90 percent of all cases,
says Dr. Victor Rivera, medical director of the Maxine Mesinger Multiple Sclerosis Clinic at Baylor College of Medicine in Houston and The Methodist Hospital.

None of the patients has had any relapse or attack since we started the trial. Tysabri, approved in November for certain multiple sclerosis patients, appears effective, fast-acting and safe for the relapsing forms of the degenerative disease, Rivera says. Tysabri is made by the trial's sponsor, pharmaceutical company Biogen Idec. The drug is being tested in an international study.


http://www.rednova.com/news/display/?id=127411
.


I find it interesting that nothing is noted about how the placebo group repsonded. Remember, this tells us alot about the type of patients that were included for this trial. The development of new lesions was controlled in almost 70% of these patients.
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