[Heather8773]

Hello John.

I’m sorry that you have had to deal with the added PNH. I remember when my husband had added a second dx it was insult to injury.

So our experience was he first was dx w PNH and they actually missed the main culprit AA.

He was started by his local Dr. on Solaris. He didn’t experience strong side effects unless he had a poor administrator that did something stupid like let it flow way to fast. Then he would get a Head ache. Or if totally miss a vein walk away and he would notice a grapefruit sized swell.... the Solaris had only just been approved when he was DX so I found it was important that we were super educated on it. Like making sure he had a meningitis shot first. 🤔
The Solaris itself seemed to be fine when it wasn’t being handled by someone who knew what to do.

We eventually switched to a specialist who diagnosed him w a Primary of Very severe Aplastic Anemia and low secondary PNH bc the clone was small.
Turned out actually he wasn’t in therapitic range PNH clone size wise to have ever start Solaris so the new Dr took him off immediately.
He didn’t have any complications.

I always have hoped that it was just new and a rare diagnosis and that we were not taken advantage of as the Solaris is very expensive, covered by our insurance and administered at that Drs office....

He took it every 2 weeks for about 6 months

I hope that you do not experience side affects unless they are positive lab numbers w Solaris

I was and always have remained grateful that anything was finally approved for PNH bc I have heard it helping others