Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > PNH
Register FAQ Search Today's Posts Mark Forums Read

PNH Paroxysmal nocturnal hemoglobinuria

Reply
 
Thread Tools Search this Thread
  #1  
Old Fri Apr 6, 2018, 11:35 AM
John K John K is offline
Member
 
Join Date: Nov 2013
Location: Massachusetts
Posts: 3
Experience with Soliris (eculizumab)?

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?
Reply With Quote
  #2  
Old Fri Apr 6, 2018, 10:25 PM
Heather8773 Heather8773 is offline
Member
 
Join Date: Jan 2013
Location: Houston, TX
Posts: 254
Hello John.

Iím 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 didnít 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 wasnít 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 wasnít in therapitic range PNH clone size wise to have ever start Solaris so the new Dr took him off immediately.
He didnít 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
__________________
Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
Reply With Quote
  #3  
Old Fri Apr 6, 2018, 10:29 PM
Heather8773 Heather8773 is offline
Member
 
Join Date: Jan 2013
Location: Houston, TX
Posts: 254
Quality of life wise it was just another Drs trip to disturb the day but he didnít have other issues from Solaris.
__________________
Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
Reply With Quote
  #4  
Old Sat Apr 7, 2018, 11:50 AM
Joce0910 Joce0910 is offline
Member
 
Join Date: Apr 2018
Posts: 4
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.
Reply With Quote
  #5  
Old Sun Apr 8, 2018, 04:55 PM
John K John K is offline
Member
 
Join Date: Nov 2013
Location: Massachusetts
Posts: 3
Thanks very much for your helpful responses Heather and Joce0910.
Reply With Quote
  #6  
Old Tue Apr 10, 2018, 01:05 PM
Leigh Clark Leigh Clark is offline
Member
 
Join Date: Jun 2007
Posts: 14
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.
Reply With Quote
  #7  
Old Fri Jun 1, 2018, 10:58 PM
Casper Casper is offline
Member
 
Join Date: Jun 2018
Location: Juneau, Alaska
Posts: 4
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.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Is Soliris (eculizumab) covered by the PBS in Australia? TASHMAC Australia 4 Sat Aug 20, 2016 05:11 PM
paying for soliris gandb77 Insurance, Finances, Disability, Veterans Benefits 1 Mon Aug 17, 2015 03:53 PM
AA & white blood cells - Any experience with alternative methods to raise WBC? KMac AA 8 Fri Feb 15, 2013 09:07 PM
FDA Approves Soliris for PNH Treatment Marrowforums News and Events 2 Mon Aug 6, 2012 04:23 PM
Solirisô (Eculizumab), the First and Only Proven Therapy for the Treatment of Patient Doug Mylie Canada 1 Thu Aug 20, 2009 02:16 PM


All times are GMT -4. The time now is 03:22 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2018 Marrowforums.org