Experience with Soliris (eculizumab)?

[John K]

I've been dealing with low blood counts and MDS (low risk) for nearly five years -- mostly wait & watch, but with some use of Aranesp and more recently Promacta. Earlier this week, I was diagnosed with PNH in addition to the MDS. Next week I'll be discussing treatment options with my hematologist, including possibly taking Soliris (eculizumab).

For those of you who have used Soliris, did you experience any of the side effects? How did it affect the quality of your life?

[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

[Heather8773]

Quality of life wise it was just another Drs trip to disturb the day but he didn’t have other issues from Solaris.

[Joce0910]

I just started on soliris yesterday; I was DX with PNH and secondary aplastic anemia in december. I did series of ATGAM treatment then was put on cyclosporine and promacta I was responded to the meds except this last month my LDH kept rising fast. My doctor wanted to start me on Soliris to prevent anymore hemolysis and she wanted to prevent any transfusion in case we decide to go to transplant route. I am young just turned 30 and was wondering if anyone stopped soliris, I have read your on it for life unless you get a transplant. My first time receiving soliris was no bad only complain is they gave me IV bendryal along with steriod before the medication and that made the experience not well. I felt loaded up from the bendryal and my soliris wasnt even "hunged" yet. It was a little frustrating but the medicine itself is a miracle drug my eyes are not yellow today and have more energy then usual.

[John K]

Thanks very much for your helpful responses Heather and Joce0910.

[Leigh Clark]

HI John K- if you would like to talk with other PNH patients who have been using Soliris for years, contact AAMMDSIF and they can get you connected, 800-747-2820 x140 or email help@aamds.org. Best wishes to you.

[Casper]

I have bern taking Soliris - eculizumab for about 2 years, without any side effects.

It cut down my transfusions to about once every month or two.