If your on the fence w Solaris

[Heather8773]

Hi all!
We went to a aamdsif conference 2 weeks ago and it was awesome one of the things we learned I was thinking maybe someone on the fence about Solaris may want to read.
We met amazing people in different stages of their journey. These are some that really inspired and held our attention. One man was dx in 1985 a woman in 1988 and another that has had PNH 36 years. I'm sure you can imagine how long and how much they went through in that time to get a dx.
What I remember the most is How positive yet real they were with all of us.
It seems the the longer LDH levels ran high the long term effects were more dramatic. The sweet woman that has had PNH 36 yrs had kidney function problems (amongst others) from long term high LDH but after starting Solaris her kidney levels made improvements (if i remeber right she was looking at makeing more serious decisions w her kidneys) and overall very happy w her decision to start Solaris (she was on the fence) so PNH could stop wrecking so much havoc And improve her quality of life. Both women were happy w the decision. They both expressed that if you can control the LDH now they would so that it could prevent other problems. Even though you may feel good NOW long term high LDH will make you hit a wall at some point.
I know every case is different. It is a personal choice. It is an expensive drug. Just passing along what I learned.