Having problems with message search?
Hi,
There is absolutely a new treatment out there! It is called eculizumab and it is still in clinical trials. It is a drug that you get at first once a week and then every two weeks. You should ask your doctor to check into it to see if you qualify and see if there is a trial site near you - most sites are starting to recruit participants now. This is a drug that people in England have been on for 2 years with seemingly very good success. If you go to the new PNH site, www.pnhdisease.com there is a list of the trial sites.
Sara
fairychild_29 <fairychild_29@...> wrote:
Hi everyone!
Im not new here, just changed my email address. i was
wondering if anyone had any new treatments that were helping them
with their disease. im just so sick of going to hospital every mont
for a blood/ platelet transfusion. I am currently taking some
vitamins and recieve procrit shots every week. was on steroids for
awhile, but didnt like side effects. also had the ATG treatment but
evedentally it did not work. is their anything new and easy treatment
out there to try? Especially for building energy. and if there is a
drug that can rebuild RBC's than i want to know if there is one for
platelets also.
Community email addresses:
Post message: PNHdisease@onelist.com
Subscribe: PNHdisease-subscribe@onelist.com
Unsubscribe: PNHdisease-unsubscribe@onelist.com
List owner: PNHdisease-owner@onelist.com
Shortcut URL to this page:
http://www.onelist.com/community/PNHdisease
Do you Yahoo!?
Dress up your holiday email, Hollywood style. Learn more.
Offline 
Send Email