View Single Post
  #1  
Old Fri Dec 18, 2015, 05:43 AM
NasC0 NasC0 is offline
Member
 
Join Date: Dec 2015
Location: Bulgaria
Posts: 2
PNH management and Quality-Of-Life

Hello all, I am (unfortunately), a newcomer to the forums and the PNH scene overall.

My girlfriend (21) was diagnosed with PNH about half a year ago, with symptoms like shortness of breath, dizziness and yellowing of the skin. Overall it's been going pretty well, she hasn't had a need for a blood transfusion yet.

We were waiting on Soliris being approved for distribution here in Bulgaria, but since our country's medical budget is fairly tight, the green-light hasn't come through and probably won't for a few more years. Until then, her primary has started her on light doses of anti-coagulants (Xeralto) for thrombosis prevention. Her hemoglobin levels have been pretty stable for the duration, at about 95 (or 9.5 I believe in US metrics).

However, her LDH and bilirubin levels are pretty high - over 1000 each (I don't know the translation in US metrics, but it's about 3-4 times over the norm). I wanted to ask you guys what do you do to manage your or your loved one's PNH in ways of alternative medicine and natural products. She's been having a lot of beetroot lately and has been taking iron suplements, but from what we know about beetroot, it increases the change of an ulcer, which is not ideal given her being prone to hemorrhage because of the anti-coagulants.

Also, I was wondering if you guys know anything about alternatives to Soliris being developed. So far i've heard about AMY-101 and http://www.fiercebiotech.com/story/b...ris/2015-07-23, but nothing concrete.

Thank you all, and good luck in your fight.
Reply With Quote