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-   -   Tysabri Information & Check In (https://www.neurotalk.org/multiple-sclerosis/37891-tysabri-information-check.html)

lady_express_44 02-23-2009 07:48 PM

Quote:

Originally Posted by Natalie8 (Post 470146)
Funny you should mention this. I believe the Tysabri has exacerbated my depression. I've struggled with depression for almost 2 decades so I'm very attuned to any shift or change in my mood. I was doing fine and stable but I've noticed creeping depression since I've been on the drug. I don't want to go off Ty. and I cannot increase the dose of the AD's I am on (I am so drug sensitive it's a miracle I've found drugs I can tolerate). So I've started taking fish oil which has helped a lot (this surprised me!). Now I just need to get my lazy butt to the gym! Exercise helps just as well as AD's, at least in my case. After one infusion, it was particularly bad and scary--a sort of super wave of heavy black depression that seemed to come out of nowhere but the really bad stuff let up after a few days. In general, though, I'd say it has had an effect on my mood that I'm not really happy about (no pun intended!) :p

I have SAD in Feb every year, so even if it was due to a drug I was on, I'd probably not even figure it out till mid-Mar. :D

Hopefully the sunshine and flowers of upcoming Spring will improve our state of mind. :)

Cherie

komokazi 02-26-2009 08:45 PM

Treasure trove of Tysabri (Natalizumab) Info to be presented at AAN 2009
 
Click the link

http://www.aan.com/go/science/abstracts

Login as a guest and type in Natalizumab in the search box at the top. In general, the data in the abstracts looks very positive and 1 of the abstracts on page 4 discusses a test (assume blood) that may correlate with immune function - maybe they will have a blood test to identify those at highest risk for PML.

Riverwild 03-02-2009 11:45 AM

Hey everyone! Hope y'all are doing well!
I missed # 24 Thursday after holding a perfect record up to now.

With all the stuff I have going on, the doc and I decided that I'll get # 24 at some point in the next few weeks after we are sure all the bugs are clear from the ruptured appendix.

I'm on heavy duty antibiotics and other meds and since there is no precedent for some of what I have done in the past week or so, we don't want to add any more problems to the mix!

lady_express_44 03-02-2009 12:00 PM

Quote:

Originally Posted by Riverwild (Post 473592)
Hey everyone! Hope y'all are doing well!
I missed # 24 Thursday after holding a perfect record up to now.

With all the stuff I have going on, the doc and I decided that I'll get # 24 at some point in the next few weeks after we are sure all the bugs are clear from the ruptured appendix.

I'm on heavy duty antibiotics and other meds and since there is no precedent for some of what I have done in the past week or so, we don't want to add any more problems to the mix!

Glad to see you up and about postinig, RW.

I was reading the information submitted for the upcoming AAN meeting scheduled for April/09, and noticed a topic called:

"Natalizumab Therapy, Surgery and Post-Operative Infectious Complications"
[P02.134], Tuesday, April 28, 2009 11:30 AM
Mark Gudesblatt, Myassar Zarif, Barbara Bumstead, Joshua Loewenstein, Anne Dunne, Lori Fafard, Laura Graffitti, Carol Seidel, Lourdes Cruz, Chris Burke, Serina Fahie, Joan Bohuslaw, Patchogue, NY

The conclusion of the study, which included 20 people who had one (or more!) surgeries over the 2 yrs, was:

"No MS patient receiving Natalizumab who underwent surgical treatment had any postoperative infectious complications. No patient required or experienced interruption in treatment. Surgery can be safely performed in MS patients receiving Natalizumab".

Hopefully that means you can back on track fairly quickly.

Cherie

Natalie8 03-02-2009 02:32 PM

RW, glad to see you are back. My problem pales in comparison to yours but I have a question about Tysabri and infections. By the way, I think I read in the literature on Ty. that a few people have had issues with their appendix! :eek: Hope you get to feeling better soon.

Has anyone here had a tough time getting rid of a bacterial infection while on Tysabri? I started out with a cold and cough. The cough and fever never went away but the cold did. I started an antibiotic while still having the cold. I thought I was feeling better but wasn't sure. I stopped the antibiotic and within 2 days I felt horribly sick--fever came back much worse, chest pain, coughing even worse. I was sleeping for hours upon hours. The doc. said my chest was clear though. He asked me if I wanted to wait and see (in case it was viral) or try an antibiotic again. I went on the Z-pak antibiotic. Within 24 hours my fever was down to normal and my coughing was much better. Anyhow, I am coming up on the 5th day (last day) of the Z-pak antibiotic. I feel WAY better but not totally well--still an occasional cough, occasional itty bitty fever that comes and goes but nothing high like before and a bit of a sore throat. I fear if I stop the antibiotics this infection will coming roaring back. I'm so tired of being sick -- going on 5 weeks.

Is the Ty. making it difficult for me to kick this infection? Has anyone had to do multiple rounds of antibiotics just to get over something while on Ty. or any immunosuppressant drug for that matter? Perhaps I am just panicking because I have been sick for awhile and I'm afraid this bug will never go away.

komokazi 03-02-2009 02:45 PM

CEDAC recommended listing Tysabri last week
 
Cherie,

Canada's CEDAC recommended listing Tysabri last week. I believe Quebec has already listed it as a reimbursable treatment option. May soon be reimburable in BC.

http://www.cadth.ca/media/cdr/comple...ry-25-2009.pdf

Chris

Riverwild 03-02-2009 07:31 PM

Quote:

Originally Posted by lady_express_44 (Post 473597)
Glad to see you up and about postinig, RW.

I was reading the information submitted for the upcoming AAN meeting scheduled for April/09, and noticed a topic called:

"Natalizumab Therapy, Surgery and Post-Operative Infectious Complications"
[P02.134], Tuesday, April 28, 2009 11:30 AM
Mark Gudesblatt, Myassar Zarif, Barbara Bumstead, Joshua Loewenstein, Anne Dunne, Lori Fafard, Laura Graffitti, Carol Seidel, Lourdes Cruz, Chris Burke, Serina Fahie, Joan Bohuslaw, Patchogue, NY

The conclusion of the study, which included 20 people who had one (or more!) surgeries over the 2 yrs, was:

"No MS patient receiving Natalizumab who underwent surgical treatment had any postoperative infectious complications. No patient required or experienced interruption in treatment. Surgery can be safely performed in MS patients receiving Natalizumab".

Hopefully that means you can back on track fairly quickly.

Cherie

Thanks Cherie, I haven't had a chance to view the AAN abstracts since I think they came out around the 20th, which is when all my stuff started. I hope to be back up to snuff soon but I'm just taking it slow right now and healing.

Quote:

Originally Posted by Natalie8 (Post 473659)
RW, glad to see you are back. My problem pales in comparison to yours but I have a question about Tysabri and infections. By the way, I think I read in the literature on Ty. that a few people have had issues with their appendix! :eek: Hope you get to feeling better soon.

Has anyone here had a tough time getting rid of a bacterial infection while on Tysabri? I started out with a cold and cough. The cough and fever never went away but the cold did. I started an antibiotic while still having the cold. I thought I was feeling better but wasn't sure. I stopped the antibiotic and within 2 days I felt horribly sick--fever came back much worse, chest pain, coughing even worse. I was sleeping for hours upon hours. The doc. said my chest was clear though. He asked me if I wanted to wait and see (in case it was viral) or try an antibiotic again. I went on the Z-pak antibiotic. Within 24 hours my fever was down to normal and my coughing was much better. Anyhow, I am coming up on the 5th day (last day) of the Z-pak antibiotic. I feel WAY better but not totally well--still an occasional cough, occasional itty bitty fever that comes and goes but nothing high like before and a bit of a sore throat. I fear if I stop the antibiotics this infection will coming roaring back. I'm so tired of being sick -- going on 5 weeks.

Is the Ty. making it difficult for me to kick this infection? Has anyone had to do multiple rounds of antibiotics just to get over something while on Ty. or any immunosuppressant drug for that matter? Perhaps I am just panicking because I have been sick for awhile and I'm afraid this bug will never go away.

Oh yuck Natalie! I am of the mind that you just didn't kick it. I'm always suspicious of short courses of medication, to me it's like the one day yeast treatment, too short a treatment. If I have to take it I want 7 days or better to be sure the bug is dead!

ewizabeth 03-02-2009 09:57 PM

Welcome back RW! :hug: Get well soon and keep us posted on your next infusion date.

Riverwild 03-03-2009 08:30 AM

Quote:

Originally Posted by ewizabeth (Post 473891)
Welcome back RW! :hug: Get well soon and keep us posted on your next infusion date.

Thanks Wiz! :hug:
I am hoping for two weeks or less, but it's up to the doc at this point. I truly hated not being able to have it because I want to be one of the success stories who stays on track. I'm just an overachiever!

We COULD end up back on the same schedule again!;)

laurasari 03-03-2009 10:21 AM

Riverwild

Welcome back hope you are feeling better.

I am very happy to say that i did have my 5th infusion. All went well after the iv was finally started. That took 4 sticks. No problem with blood draw but then it came to starting the iv one person tried twice and said no more next one was successful on # 2. Anyone else have thsi problem. Last time took 2 tries all others just one. Because i was itchy last time he gave me Benadryl before the infusion but said next time take Clariton before i come. It does not make you sleepy.Last infusion was in Fl so he did not know.

Good luck to everyone have a great day.
laurie f


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