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I am very sorry you have to go thru this. At the same time I am glad that you finally have a correct DX because now you can get a treatment that will help. I can tell you what a hematologist explained.
The PNH cells are missing the protection from a part of your immune system called Compliment. Without this protection, Compliment can break down those cells easily. We have been told this can really effect the Hgb but may also effect the ANC and Platelet count. Compliment is activated when you become ill or your body is placed under extra stress.
Solaris works by blocking Compliment. People who take Solaris feel so much better. One thing you should know.. People on Solaris are at a higher risk for Meningitis so you will need to be vaccinated every 5 years for this. Solaris blocks compliment at the level that Compliment would fight Meningitis.
Do you have to stay of this for your lifetime? Solaris does not stop the PNH. Actually the number of PNH cells you have will increase. Why? Because Solaris will stop Compliment from breaking down the PNH cells. If you go off Solaris, Compliment will be able to break down you blood cells again and your counts could drop pretty fast depending on the % of PNH cells you have. The break down of these cells is hard on the body, especially the kidneys which have to filter out all the waste. I have heard a Dr say that it is not impossible to come off Solaris, but it is tricky and people usually do not want to because they feels so good on it.
The only way to get rid of the PNH cells is a Bone Marrow Transplant. I heard a Dr say that with the development of Solaris, many people are not going for transplant. Solaris is given IV every 2 weeks.
I hope this info helps and you feel better soon. Please keep us informed of your progress. We are here for you.
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