Antiphospholipid Syndrome Support Group

I am getting my shot tomorrow and am so nervous, still in debate

I know...I am not sure which is the lesser evil. However, our disorder is high risk. My primary said to get it and I am getting a second opinion at the ob. I think I should get it as I have kids. Did you find anyone with our condition who was vaccinated or had swine flu.

I have been asking all over and can't find anyone!! I guess I am going to just get it, i need to protect the baby! I will keep you posted.

welp got my shot so we will see what happens..all the dr's on the office got it as well soooooooooo that should tell you something good right??

hey i am pregnant and have antiphospholipd syndrome and taking a daily asprin. i got the h1n1 shot and am fine. no side affects just a tender arm after. so i would do it if i were you.

Thank you! It is so reassuring to hear that! Were you able to get thirmerosol free?

hi, Here is the info. I got from the doctor yesterday. I am in a clinical study at (fluvastatin) and need to go to NYC 1x a month for blood and to talk to the doctor there. His opinion is that the regular flu vaccine is fine. He said they he is not comfortable recommending the swine flu vaccine because of all the unknowns. I also work in two elementary schools (am a school social worker, and work very closely with our school nurses on various issues), and know that there are children who have had the swine flu, and have recovered nicely.

I see fluvastin is for high cholesterol. Is the study just examining drug effects on cholesterol or other uses? Regarding New York...I love it. I am originally from Queens. There is nothing like the energy in New York. Thank you for the info. Keep me posted. I am high risk for complications, and have two small children. One is old enough for the mist. Can't find a mercury free one for the little one...can't wait till swine flu disappears. Pamela

Hi, regarding the Fluvastatin study... for me, it had nothing to do with high cholesterol (sp?). My cholesterol has always been really good (!). Somehow, they found in mice and in labs that fluvastatin did something (I think downregulated) tissue factor in the mice. They think that upregulation of tissue factor is associated with the clot formation (I could have this totally backwards though!). I have been on the fluvastatin for 3 months (tonight is my last night's dose!) and will be off it for three months. They monitor my blood 1x a month and send it to the Univ. of Texas for the study stuff. So, starting tomorrow, I am off it, but will go back right before Thanksgiving for my monthly blood work. They did not test my cholesterol since being on the study, but I imagine it was just fantastic while I was on the statin (since it was good to begin with).

One thing I asked my doctor is about new treatments ( I am only on aspirin, since my apls were found "by accident" by my gynecologist...). My doctor thinks that over the next 5-10 years that there should be new ways of treating apls other than with anticoagulants. He said that there will be a conference in Texas in April (I looked it up online, and perused the agenda) and that they will talk about new treatments there. I am excited. The website I found is: http://www.utmb.edu/apla2010/defau...

regarding NYC - I am from Brooklyn! We moved (my husband, two kids and I) about 80 miles upstate 9 years ago. I love NYC too; we just couldn't afford it (we are both educators) and we also wanted to raise our kids with a backyard, etc.

Oh, my kids have their physicals with our ped. on Nov. 4th. I really like our ped., and work with him professionally (through my job) quite a bit. I will ask him about the vaccine for children and let you know what he says. I trust him a lot.

Take care. Feel free to email me at marlasumich@yahoo.com

marla

There are a couple of new drugs being investigated but so far they are not reversible. I went to college at new paltz. I love upstate. Thanks, pam