NeuroTalk Support Groups - Tysabri Information & Check In

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Hi Brenda,

I'm sorry you are feeling so down tonight. I'm sending you positive thoughts. :hug: :hug: :hug: This is such a stinker of a disease. Does the neuro think the MS is progressing because you have 2 new lesions? What if you were not on Tysabri -- is it possible you might have developed 10 lesions or 15 lesions? Perhaps the Ty. is working to some degree. I hope you do okay with the antibody test. If you're feeling crummy just remind yourself that pills are about to come out soon--in the next year or two. There are lots of drugs in the pipeline. I see hope in your future. I have a file full of websites I go to when I feel down and need a pick me up -- they all involve positive news about future research and drugs. If you need some, PM me and I'll send them along! And there is some good news. You are having minimal clinical symptoms STILL.

Take care of yourself,
Natalie

Quote:

Originally Posted by 4boysmom (Post 463732)

Bad news from Brenda tonight! I had an insulin resistance test yesterday morning, and my MRI in the afternoon. When my neuro's called and left me a message to call her back, I feared the insulin test was bad!

It shows I have a moderate level of resistance, and I'll have to come in and talk about that further. It could be good in that it will force me on a diet, possibly with medication, to get my weight and insulin under control. I was expecting as much since my dad is Type 2, I'm overweight, and I have high BP.

I was not expecting a bad MRI :mad:! The MRI showed two more lesions and that my disease is progressing. I will be going in for an antibody test on Thursday along with seeing my neuro! I just don't get it! I don't have any symptoms other than that tingly hand and being a little wobbly with balance at times.

My mind is as good as ever! My eyes get blurrier when tired lately, but I've never been on steroids for any of this MS stuff! I wouldn't even know I had the dang disease if I didn't have the MRIs. My neuro must be worried also. He can't figure out why the disease is progressing on Ty unless I have antibodies.

What am I going to try next if I have antibodies? On Avonex, the disease progressed. Rebif, disease seemed to stabilize but I itched all over, had a patch of psoriasis that didn't go away, and was tired all the time. Neuro thought it was probably allergic reaction of some kind. I'm guessing he'll try Copaxone, but I don't know!

I'm very discouraged tonight. I thought everything was going so well, it just through me for a loop! Add stress from work and the world is not pretty tonight.

Hey RW -- When you've got the time, can you send those articles to me too? Many thanks! :) :)

Quote:

Originally Posted by Riverwild (Post 463677)

Give me a day or two and I will send the articles to you if you like :hug:
I gotta get through two more 12 hour shifts and an extraction of that stupid wisdom tooth!:D

How was your MRI?

I'm doing a little better this morning, but still slightly weepy. Maybe I need those ADs again! It was just so unexpected, and pressures at work were awful yesterday, with no end in sight!

I had just come from a meeting that didn't go quite as I planned, then I get out to a call from the nurse. I was expecting good news from the MRI, and when it didn't turn out that way - well!

I'm not going to worry too much until I talk with the neuro on Thursday. It could possibly be that those lesions came during the 2 months of transition between Rebif and Ty. It could be that like Natalie said that I would have been a lot worse on something else!

The neuro said to still have my Ty next week because he won't have the antibody test back before then. He knows my bloodwork is good, I have that done every three months.

And I knew the insulin resistance would probably be in my future because of the 25 lbs. I've gained since being diagnosed. I walk almost every day for a good 40 minutes, and I try to watch what I eat. But reading about insulin resistance, all the things I crave are what I should be avoiding.

I'll get through more meetings today, and maybe I can get work to back off of a project I'm in charge of because the timing is just bad with the economy. If I can get them to hold off until summer, instead of pushing ahead too quickly, that will also help my mood!

Thanks for caring guys!

Quote:

Originally Posted by 4boysmom (Post 463732)

I was not expecting a bad MRI :mad:! The MRI showed two more lesions and that my disease is progressing.

I was a bit surprised by their statement in last Friday's conference call, that they would not expect to see disease progression in patients that use Tysabri:

"There have been a few patients who have received plasma exchange in the U.S. in the case before full confirmation. But in a sense that is consistent with our advice which is to suspend TYSABRI dosing unless PML can be ruled out. Any kind of relapse activity or disease progression on TYSABRI is extremely uncommon because the drug is so effective.

So we're advising physicians to be very vigilant. If you suspect PML, stop dosing and some patients have even gone so far as to get plasma exchange, even before full confirmation. Dr. Alfred Sandrock"

http://seekingalpha.com/article/1190...nscript?page=7

Did your neuro happen to mention whether they were "enhancing" (i.e. "active") lesions, or not? If not, like you said, they may very well be from before you got on Tysabri.

Good luck on Thurs.

Cherie

My first question will be were there any enhancing lesions on the MRI. The nurse just gave me a little briefing over the phone, so I didn't get any great details.

I'll go in tomorrow and talk to the neuro, and then get the antibody test done after. Then I'll go from there!

Sorry about the test results. :hug: I hope they aren't enhancing lesions. I'll be thinking of you.

Quote:

Originally Posted by 4boysmom (Post 464178)

Quote:

Any kind of relapse activity or disease progression on TYSABRI is extremely uncommon because the drug is so effective.

If one believes Biogen's stats stating that the reduction of risk in disease progression is reduced by 68%, then what about the remaining 32% for patients??!! I hardly doubt that 32% qualifies as "extremely uncommon"!

It's comments like this that really irk me about Tysabri or any other medication that big pharma markets.

Harry

Quote:

Originally Posted by Harry Z (Post 464621)

It's not the risk in disease progression that is reduced by 68%, Harry, it is the number of relapses that is reduced by 68%.

They really don't expect to see disease "activity" in the way of lesions popping up or getting bigger while people are on Tysabri. Some % of people are ALSO seeing a reduction in disability accumulation too, but having very little lesion activity is what they are measuring to determine "disease progression".

Cherie

Just got back from neuro. Good news in that they were not enhancing lesions, so I haven't had anything go on in the last 6-8 weeks. He said the new lesions possibly could have come before I started Ty, that we only know that I have 2 more since my last MRI.

I went and gave blood for the neutralizing antibodies, but won't know the results for several weeks. I'll have my next Ty as scheduled next week. If the NABs test comes back negative, I'll just keep on keepin' on with Ty. If it is positive, then I can either quit Ty and try something else, or keep on Ty for an additional 3 months, have another NAB test and see how it looks.

I'll make that decision later after the results come in.

I'll be seeing another doctor for the insulin problem. But I'm feeling much better about things today!

Quote:

Originally Posted by lady_express_44 (Post 464713)

Hi Cherie,

Got my numbers crossed.....the Affirm trial showed a 42% Reduction in the Risk of Disability Progression and Sustained 67% Reduction in Relapse Rate. That would mean that 58% of patients could have disability progression and 33% have relapses.

For some docs to say that it is extremely uncommon for MS patients to have disease progression or replapes while on Tysabri is really stretching it, don't you think! Just reading comments on other MS Forums from some patients on the drug seems to negate that kind of statement.

Take care.

Harry