NeuroTalk Support Groups - Tysabri Information & Check In

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Upcoming AAN Conference in Chicago

Here is the link to abstracts for the upcoming AAN Conference.

http://www.abstracts2view.com/aan2008chicago/index.php

Check box ( I understand and agree) and click submit under Guest Access.

You can search for specific drug studies by name in the search box at the top of the page.

Tysabri ( Natalizumab) has 18 matches.

http://www.medpagetoday.com/ProductA...ptions/dh/8522

A small paraphrased section from this link I got from Sassy follows:

Quote:

The [FDA] warning says that signs of liver injury also had "been reported for the first time after multiple doses."

In some patients the liver damage or problem "recurred upon rechallenge, providing evidence that [natalizumab] caused the injury."
The drug label now now includes the statement that Tysabri "should be discontinued in patients with jaundice or other evidence of significant liver injury (e.g., laboratory evidence)."

Ok, so what is "evidence of other significant liver injury"?

The reason I ask is because I've been having worsening heartburn that now includes what I thought was stomach pain? My PCP has been doing tests to find out why Nexium and Prilosec OTC is not relieving it. I also gave up coffee and spicy foods. I suppose I could also give up chocolate and my daily glass of wine. :icon_mad:

I had blood tests last week, and today, an ultrasound of my liver, gallbladder and pancreas.

I have to have a stress test on a treadmill on Friday. :( I don't think my heart has a problem, but who knows? I really hope the PCP is just being overly dramatic. :rolleyes:

They're going to try to get the ultrasound results by tomorrow, because I'm due for my next infusion on Wednesday afternoon.

I'm also supposed to have new MRI's on Wednesday at noon.
I doubt there's anything seriously wrong, because I take good care of myself, but I'm a little bit concerned. Wish me luck with all this! I don't want to give up the Tysabri, but I kind of like my internal organs too!

Quote:

Originally Posted by ewizabeth (Post 229083)

http://www.medpagetoday.com/ProductA...ptions/dh/8522

A small paraphrased section from this link I got from Sassy follows:

Ok, so what is "evidence of other significant liver injury"?

The reason I ask is because I've been having worsening heartburn that now includes what I thought was stomach pain? My PCP has been doing tests to find out why Nexium and Prilosec OTC is not relieving it. I also gave up coffee and spicy foods. I suppose I could also give up chocolate and my daily glass of wine. :icon_mad:

I had blood tests last week, and today, an ultrasound of my liver, gallbladder and pancreas.

I have to have a stress test on a treadmill on Friday. :( I don't think my heart has a problem, but who knows? I really hope the PCP is just being overly dramatic. :rolleyes:

They're going to try to get the ultrasound results by tomorrow, because I'm due for my next infusion on Wednesday afternoon.

I'm also supposed to have new MRI's on Wednesday at noon.
I doubt there's anything seriously wrong, because I take good care of myself, but I'm a little bit concerned. Wish me luck with all this! I don't want to give up the Tysabri, but I kind of like my internal organs too!

Wiz,

Sorry to hear you are having problems. I certainly hope it turns out to be minor! Having to take all those tests just bites, especially when they are all in such a short span of time! It seems to leave no time for the enjoyable things in life! I'd not give up the chocolate and the daily dose of resveratrols until the doc said they have to go! One must have SOME vices!

(The "evidence of other significant liver injury" would be the blood tests they run, the scan they do on your liver, etc.)

Please let us know how it goes for you and I hope you feel better!:hug:

Hey 'Wiz,
Evidence of other significant liver injury can be itching, jaundice, yellowing of the whites of ones' eyes, abdominal swelling, pain...

becca44

Thanks Becca,

I know, I found that out yesterday. This is going to bug me until I find out what, if anything, is wrong. I saw the dermatologist last week to get a baseline check for moles and such. She said all of my moles are normal and healthy. :Scratch-Head: But I also asked for something for the crown of my head. It's been itching madly. She gave me a strong shampoo made for people with psoriasis, though all she saw was a tiny bit of dandruff. The shampoo costs $200+ for 4 oz. before insurance.

So all I have is that itching and the abdominal pain. I don't know if the PCP ordered a liver panel last week or not. I'll ask today when I talk to his nurse.

I hope I'm just worrying over nothing. It does say on the package insert for Tysabri that abdominal pain can be a side effect. I think it also mentions pruritis (sp?) which I think means itching.

I'm pretty careful to have a healthy diet with lots of carcinogen fighters, so I doubt it's anything serious.

I Hope everything turns out OK for you, Wiz. That's a bit scary...:hug:

I hope everything turns out ok, too, Wiz! Keep us all posted!

Whew! The liver is A-OK! :) My PCP called me late today. He said that the gallbladder is slightly enlarged, and I have high calcium levels in my blood. Those are the only two abnormalities.

I still have to have the stress test on Friday, then likely a scope of my esophagus and stomach. They also might do a CAT scan of the gallbladder. He said there was no sign of gallstones. :) So I can quit worrying about my liver!

I can have a glass of wine tonight, and go for my infusion tomorrow! :trampoline:

I also get a set of brain MRI's tomorrow, and the facility is right by the neuro's office, so I'll have the results at my appointment. Wow. I had myself worked up, worrying about pancreatic cancer and other such nightmares. :o

Quote:

Originally Posted by ewizabeth (Post 229851)

Yay Wiz!!! Have a glass of wine for me too! :hug:

I was suspicious of inflammation of the gallbladder but I ain't a gastro doc. I brought in quite a few patients with gall bladder attacks and it ain't pretty when it's inflamed. Do you have the pain after eating fats? Also please ask your gastro doc to test for h. pylori if he hasn't already. It would suck if it was something as simple as that, after all the worrying you have been through, and it's a simple breath/saliva test depending on which one he uses.

Quote:

Originally Posted by ewizabeth (Post 229851)

Whew! The liver is A-OK! :) My PCP called me late today. He said that the gallbladder is slightly enlarged, and I have high calcium levels in my blood. Those are the only two abnormalities.

Good news, Ewizabeth!

"It is never normal to have high calcium levels in your blood.

Over 98% of ALL people who have a blood test that shows too much calcium will have a parathyroid problem.

... it is (also) possible for a person to take too much vitamin D so that they absorb too much calcium from their diet and hold on to too much calcium in their kidneys... and their calcium goes high."

http://www.parathyroid.com/high-calcium.htm

Cherie