Hi Amiee
My husband has been on Solaris since November. In the beginning he had head aches and a REALLY runny nose and post nasal drip after treatments but those have both gone away. We love his Nurse case manager that has been apart of our lives since starting Solaris. She has been so helpful in a supportive, financial, and knowledgeable way! His transfusions drip about 45 mins (the first couple visits they dripped slower, gave more saline before and after, and watched he wasn't allergic) so as long as they have a chair open for him it's not long at all! His nurse case manager is looking into him having home infusions as soon as his blood counts normalize(mostly low due to SAA) that will be nice and actually cheaper then an office visit!
His LDH dropped about 200 pts after his first couple treatments
Just remember its very important to have a meningitis vaccine 2wks prior to starting!And if you do start Solaris make sure the nurses give you every last drop!
We agree about the port. My husbands veins are good and the medicine isn't hard on them.
Keep a binder of all your treatment dates, blood tests , LDH levels etc.
My husband said to tell you you'll feel like a million bucks after a few treatments
I think he's being serious and funny at the same time bc of the price lol
So far they like you to comit to Solaris "for life" we choose to look at it as "until a pill, or something better comes along
but people have come off solaris w strict Dr supervision. It is bc your body COULD go in hemolysis (hemolytic ?) crisis after stopping where the hemolysis gets very high and can cause nasty/dangerous effects from intravascular /extravascular hemolysis. like a clot etc.
But so many people have been happy w solaris.
Best of luck!
Heather