The Atypical HUS Foundation

Currently an aHUS patient using or considering treatment with Soliris? Please add your voice to this Forum!
Many members of this website have children or adult family members whose aHUS is being treated with IV doses of Soliris, a complement inhibitor that is FDA approved for paroxysmal nocturnal hemoglobinuria (PNH) and for atypical hemolytic uremic syndrome (aHUS). Created by Alexion Pharmaceuticals, Soliris (eculizumab) is an antibody against terminal complement protein C5 that inhibits complement activation. Data currently available suggests that Soliris can create a blockade of complement c5 to maintain patient kidney function with reduced platelet consumption and hemolysis. Our interest in the aHUS community began with reports that Soliris apparently halted hemolysis in adults with PNH, preventing the kidney damage that is also a devastating hallmark of aHUS activity.  Clinical trials for Soliris use in aHUS patients resulted in 2011 FDA approval for Soliris use in aHUS patients (http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm272990...).

 

Soliris is a recombinant humanized monoclonnal antibody, derived from human IgG2 and IgG4 sequences. Composed of two 448 amino acid (protein) heavy chains and two 214 amino acid light chains, Soliris is supplied in 30 mL single-use vials containing 300mg of eculizumab and administered via IV infusion.  Further technical details are available on this website in the "How Soliris Works" Forum with information courtesy of www.rxlist.com/soliris-drug.htm .

 

The company website at www.alxn.com has a tab dedicated to Soliris and PNH patients, where participants in clinical trials noted that Soliris was generally well tolerated with some patients reporting adverse side effects such as headache, runny nose (nasopharyngitis), back pain, nausea and tiredness (fatigue).   It is very important to note that patients using Soliris are at increased risk of meningococcal infections, and so need to receive a meningococcal vaccine at least 2 weeks prior to beginning treatment with Soliris.

 

Information is available at 1-888-SOLIRIS, Alexion's OneSource connection staffed with knowledgable RNs who will assist aHUS patients and their families with various facets involved with Soliris therapy. Alexion's corporate website at www.soliris.net provides information about Soliris as it pertains to PNH, a rare disorder with some similar hemolyzing characteristics.  With the advent of FDA approval for Soliris use in aHUS patients on Sept. 23, 2011, it's anticipated that Alexion will be able to expand patient and family contact with a wide variety of aHUS patient supports and a specialized website devoted to aHUS concerns, issues, and innovative solutions.

 

Alexion Global Headquarters (Tel: 203-272-ALXN) is in Conneticut, but the 'Contact Us' area of their website lists contact info for France, Belgium, Germany, Italy, Spain, England (UK), Tokyo (Japan), and Australia.  Parents/aHUS patients who call (203) 272-ALXN first will be asked to give their name, followed by a request for the physcian's contact information.  Consider asking your physician to utilize the "Doc to Doc Registry" on our Home Page if you are interested in Soliris for an aHUS patient.  Physicians with inquiries regarding Soliris may contact the Medical Information Department of Alexion Pharmaceuticals, Inc at 1.888.SOLIRIS (765-4747)

 

Physicians formulating letters seeking insurance coverage of Soliris therapy to maintain aHUS patient's renal grafts can request the Foundation's helpful template.  Please email linda@atypicalhus.org with your office/hospital contact info.
 
Parents- For information regarding Soliris therapy, please direct questions to Alexion Pharmaceuticals at 1-888-SOLIRIS .
Outside of the USA and Interested in Soliris?  Alexion Pharmaceuticals has a corporate site which lists contact points in 50 nations.  Click HERE for contacts in various nations.
Video:  Presenting at Dr. Tim Goodship's aHUS Family Conference held in the UK in June 2011, Neil Sheerin presents information focusing on the the mechanics of the disease process and treatment of rare disease caused by excessive and uncontrolled complement activation. The role of complement, a description of eculizumab (Soliris) as an anti-C5 monoclonal antibody, clinical trial info, and actual patients using this therapy are the included in this presentation. http://ahus.org.uk/videos/Neil/
 
Neil Sheerin is the Professor of Nephrology at Newcastle University and a Consultant Nephrologist at the Freeman Hospital, Newcastle upon Tyne. His laboratory research has focused on understanding how abnormal activation of the immune system leads to kidney disease, in particular his the role of the complement system. http://ahus.org.uk/speakers.html#neil-sheerin
 
NOTE regarding potential for aHUS damage in organs other than the kidneys
The topic of aHUS complications has surfaced in multiple commentary, referring to potential effects of aHUS damage that may impact other vital organs such as the heart, bowel, or brain.  Multi-organ involvement in aHUS patients has been referenced by multiple researchers, and patients/families/medical personnel may wish to begin their exploration of this topic at  www.ahussource.com , a website provided by Alexion Pharmaceuticals (makers of Soliris, or eculizumab).  Commentary at  http://atypicalhus.ning.com/profiles/blogs/ahus-complications-poten...

 

(Note:  Unfortunately, I'm sorry to report that our Ning Network platform has no mechanism to allow the most current posts to appear first in a Forum.  Please start on the last page for most recent updates and comments.)

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Just got labs back today and Coen continues to stay very stable on the Soliris. HCT is over 40 and platelets are 248. Creatinine is remaining stable at 1.5. No signs of hemolysis. Whoohoo! Sounds like the plan for him is to remain receiving Soliris every two week indefininatly. Even though the Soliris is expensive, we're finding it should lower our long-term insurance billings if it continues to be effective. Ivig was also very expensive and Coen was receiving that as often as twice a week at times--not even considering the cost of relapses with hospitalization.

Linda Burke said:
Skyler received his 5th 600mg dose of Soliris today, two days after his fifth birthday. All his lab chemistries have values that are at or near normal range - talk about a wonderful birthday present! We just received our first hospital "Services and Charges" statement noting the pharmacy charges of Soliris (eculizumab). YIKES! The current "protocol" for the few aHUS patients trying this drug is for 300mg (pharmacy billing of $6,186.60 ) of Soliris to be given via IV infusion once a week for 4 weeks. Skyler next graduated to 600mg (pharmacy billing of $12,373.20) of Soliris to be administered once every two weeks. Mind you, that is the billable cost of Soliris as a drug, and does not include the other separately listed hospital fees incurred such as the hospital room charge, dressing kit, labs, etc.)
For those of you who don't have a calculator handy, Soliris treatment would incurr drug costs of $24,746.40 for the first 4 weekly 300mg doses. Since Skyler just had his 5th 600mg dose (5 x $12,373.20= $61,866.), our Soliris pharmacy tab currently sits at $ 86,612.40 . Since Skyler was diagnosed on 3/36/09, all of these bills will need to be processed through our insurance company before any copay is determined and then billed to us.
I would encourage anyone considering Soliris infusions to get their finances in order well before beginning a Soliris regimen! It was fabulous that Skyler's initial Soliris infusion was so dramatic in halting the devastating effects of hemolysis, indicated in labs drawn 48 hours after the first 300mg dose. Clearly, one could not maintain health/kidney function by continuing 600mg doses of Soliris every two weeks indefinitely - costs would be too prohibitive. At some point we will need to consider how to reduce Skyler's dosage (mg amount) and/or frequency (every 3 weeks?)...
In the art and science of medicine, aHUS is a puzzle that continues to baffle and dismay as we search for viable treatments.
Jodi- such good news to hear that Coen is doing well. Did they draw an LDH level in Coen's labs today? It's a banner day for the Soliris crew because Skyler also had labs drawn prior to his 6th 600mg dose of Soliris and he, too, is doing well. Platelets are 307 Thou/uL and H & H are 13.8 and 38.1. Creatinine (a marker for kidney function) is .30 and we were so happy to see an LDH (a marker for aHUS disease activity) of 238. It was the first time we've seen an LDH that low since Skyler was diagnosed with aHUS, and a far cry from the "critical high" value of 2165 U/L Skyler had on April 1st, 2009 after 5 days of plasmapheresis.
I am SO grateful for Soliris and believe that Skyler currently has perfect kidney function due to the fact that he got his first dose of Soliris less than 2 weeks after initially presenting with aHUS. For Skyler, Soliris immediately unplugged the destructive aHUS machine with that first dose. At some point I'll wonder if we should try backing off dosage amounts/ frequency to 300mg every two weeks or to maintain 600mg but every 3 weeks. Logically, Soliris would probably leave Skyler's system unprotected at the end of 3 weeks so if we alter treatments, it would seem most feasible to try 300mg every two weeks. Obviously, there is a risk of relapse to consider - and there is no data/protocol for tweaking Soliris infusions. The aHUS lady in Germany who had Soliris to maintain her renal transplant went without Soliris for 8 months but relapsed and then went back on a Soliris regimen. Apparently, she did not build up a tolerance and had no issues with resuming her prior Soliris treatments.
Whoohoo back to you Jodi, and thanks for keeping us posted. Has your doctor been contacted by any other docs who have aHUS kids interested in possibly trying Soliris? If so, perhaps s/he would be kind enough to direct those parents to this website.
Jodi--

This is good to know....all of Aiden's testing has come back normal thus far, which left me wondering if Soliris had any hope of helping him or not.....Thanks for sharing!


Jodi Kayler said:
Hi Svetlana,
Coen has tested negative for all mutations. Labs have been repeated in Italy (twice), Canada, Germany, and U.S. He has been tested multiple times for Factor H, I, MCP, CD46, B, ADAMTS13 mutation and antibody to Factor H. They assume Coen could have an antibody that causes the HUS but since you have to know what to test for, there is no way to find it. He has also responded well to Ivig which also proves the "antibody" theory. I'm not sure we will ever know the source of his HUS. There is a small percentage of cases that fall in the "unknown" category.

We were nervous starting Soliris since he is not Factor H and the other cases being treated with Soliris are. It appears that the good news may be that no matter the source, Soliris may be effective.

Svetlana Finley said:
We just got e-mail from our doctor and because her results are normal, they will try to figure it out if there any other testing available. I e-mail her back, so what is the next step and will be Anna be in the study and receiving Soliris? This is our doctor answer:
HI Sveta, Anna can still be in the study but we may need more testing to do to know exactly what the problem is. Anyway, in order for her to be in the study, we have to stop the pheresis and observe her, once she goes into a relapse, then she gets the medication, if she does not relapse then she does not get it. Any one know any advices for what other tests we need to do now?
We been tru with Anna's relapses for almost a year, i don't know if i want to wait for another one.
We wanted to go ahead and get other testing done ( antibodies and other)at Iowa and our dr. contacted dr. Richard Smith and he suggested to wait with other testing until study will be started. They will be doing those testing, so now are plan to stop Anna's treatments. We will be going biweekly right now starting tomorrow.

Christy said:
Jodi--

This is good to know....all of Aiden's testing has come back normal thus far, which left me wondering if Soliris had any hope of helping him or not.....Thanks for sharing!


Jodi Kayler said:
Hi Svetlana,
Coen has tested negative for all mutations. Labs have been repeated in Italy (twice), Canada, Germany, and U.S. He has been tested multiple times for Factor H, I, MCP, CD46, B, ADAMTS13 mutation and antibody to Factor H. They assume Coen could have an antibody that causes the HUS but since you have to know what to test for, there is no way to find it. He has also responded well to Ivig which also proves the "antibody" theory. I'm not sure we will ever know the source of his HUS. There is a small percentage of cases that fall in the "unknown" category.

We were nervous starting Soliris since he is not Factor H and the other cases being treated with Soliris are. It appears that the good news may be that no matter the source, Soliris may be effective.

Svetlana Finley said:
We just got e-mail from our doctor and because her results are normal, they will try to figure it out if there any other testing available. I e-mail her back, so what is the next step and will be Anna be in the study and receiving Soliris? This is our doctor answer:
HI Sveta, Anna can still be in the study but we may need more testing to do to know exactly what the problem is. Anyway, in order for her to be in the study, we have to stop the pheresis and observe her, once she goes into a relapse, then she gets the medication, if she does not relapse then she does not get it. Any one know any advices for what other tests we need to do now?
We been tru with Anna's relapses for almost a year, i don't know if i want to wait for another one.
Cheryl,
I'm hoping Jodi will be good enough to also add her commentary/ideas about Soliris candidates to my perceptions.....
After reading articles about Soliris and speaking with others, I believe that the first aHUS patient to try Soliris was a German lady whose aHUS recurred post-renal transplant. The second was a baby in Cincinnati who did not respond well to plasma therapies. Sadly, Skyler presented with aHUS issues only 10 months after his big brother Hunter died so I believe our situation was rated as an extreme case- we were told that Skyler was the 3rd aHUS patient in the world to receive Soliris. I'm under the impression that Coen was the 4th, and believe that Jodi noted that Coen also did not respond well to plasma therapies. I'm sure that Jodi could do a much better job than I in explaining the hows and whys Coen began a Soliris regimen. Dr Lothar Zimmerhackl of Austria has, I believe, an idea of the number of atypical HUS patients using Soliris- and of course the makers of the drug have the most solid registry of current users. It would be great if they both would join this website! While not privy to details, it was my understanding that as of June there were 15 aHUS patients using Soliris. I cannot verify that number, however.
It is my personal belief that Soliris is responsible for a chemically induced remission of aHUS for Skyler. Our family history with Hunter leads me to assume that Skyler would have gone through a similar aHUS experience of poor response to plasma infusions, becoming pheresis dependent, and renal insufficiency progressing to increasing loss of kidney function. Soliris stopped the hemolysis with a single dose, so in my limited experience the sooner Soliris is given the sooner damage to the kidneys is halted. The catch(es): patients may need to continue Soliris infusions indefinitely, the cost of the drug is prohibitive, and no information currently exists on possible drug effects for children. I realize that while FDA approved for PNH, a rare disease that affects adults, Soliris protocols for children do not currently exist and little information from the drug's makers can be publically release until clinical trials are conducted. I believe that Joy Lewis has already posted links to Soliris' clinical trials on this website.
Our Foundation director Bill Biermann is trying to coordinate a representative from Alexion Pharmaceuticals, makers of Soliris, to present at the fall Parent Conference that he is creating for aHUS parents. Perhaps Bill can give you the inside scoop on Conference details :) I certainly hope that the Parent Conference crystalizes and that an Alexion rep will present information for people considering a Soliris regimen.

Cheryl Christine Pallme Biermann said:
Linda, it would be of valuable, ground-breaking information if, and I don't know if this is too invasive or not, to share the particulars of how a patient is deemed a good candidate for Soliris, for both parents and docs. Then if we could follow how it is given, where, time and risks or reactions the weening of Soliris, (or not). This would help parents know when to start asking about it and what they are facing...hearing about the great labs is great but it helps to know ahead of time when to start the process, don't you agree?
Here's a little insight how we came into trying Soliris:

Over 5 years, we found heavy doses of Ivig was the only treatment that put Coen into a pseudo remission--but only with frequent and ongoing doses. Just like a blood product, he started having migraines and his allergy markers were increasing. In January, even the large doses of Ivig were not as effective as they had been and he started to slide backwards. By March, we were in a full relapse. He was back on dyalisis, extremely sick, uncontrollable high blood pressure, and not responding to any treatments including daily pheresis after 5 weeks--and we were out of options. My husband and I pushed fairly hard to explore the Soliris option. It was a big decision for us and was not taken lightly by our doctors. Our 3 doctors along with the pharmacy team spent a lot of time and energy weighing the risks. I know our doc team would of rather been part of a controlled clinical trial rather than going the route we did. Luckily everything is working great so far and I'm very happy they decided to take the risk--but at the same time it was very scary and I understand completely why other doctors are acting cautious in the decision process.

We are hoping this continues to be effective long-term solution and insurance continues to cover the cost as they are now. We did receive word today, because of the success, that insurance has agreed to to continue coverage through 2009 with the idea that it will be continued long-term.
Fabulous news about insurance coverage being granted!

Jodi Kayler said:
Here's a little insight how we came into trying Soliris:

Over 5 years, we found heavy doses of Ivig was the only treatment that put Coen into a pseudo remission--but only with frequent and ongoing doses. Just like a blood product, he started having migraines and his allergy markers were increasing. In January, even the large doses of Ivig were not as effective as they had been and he started to slide backwards. By March, we were in a full relapse. He was back on dyalisis, extremely sick, uncontrollable high blood pressure, and not responding to any treatments including daily pheresis after 5 weeks--and we were out of options. My husband and I pushed fairly hard to explore the Soliris option. It was a big decision for us and was not taken lightly by our doctors. Our 3 doctors along with the pharmacy team spent a lot of time and energy weighing the risks. I know our doc team would of rather been part of a controlled clinical trial rather than going the route we did. Luckily everything is working great so far and I'm very happy they decided to take the risk--but at the same time it was very scary and I understand completely why other doctors are acting cautious in the decision process.

We are hoping this continues to be effective long-term solution and insurance continues to cover the cost as they are now. We did receive word today, because of the success, that insurance has agreed to to continue coverage through 2009 with the idea that it will be continued long-term.
Skyler's Soliris infusion was today - another nice set of lab values! We're pleased to report the following:
Hct: 37.5 and HgB: 13.7
Platelets: 267
Creatinine: .32
LDH: 223

We're staying the course with 600mg of Soliris via IV infusion through Skyler's mediport once every 2 weeks. Looking forward to a good report on Coen's treatment, too, Jodi - all the best to you!
So glad Skyler is doing well. Coen had his infusion yesterday.
PLT: 297
HCT: 39.7
Creatinine: 1.7
BUN: 35 (down from 88!)
We don't measure LDH on a regular basis.
Everyone is thrilled with the consistent labs. The plan is to remain at 2 weeks.
Blood pressure is stable and epogen dosing was reduced.

On another note, Alexion reported Q2 earnings. Due to promising outcomes on new orphan diseases, share prices have steadily increased from $31 in April to now $43. The following is a quote from their report:

"Soliris as a Treatment for Patients with Other Complement-Mediated Disorders
In May, reports of 15 patients with atypical Hemolytic Uremic Syndrome (aHUS) treated with Soliris were discussed at a scientific conference in Innsbruck, Austria. The cases presented in Innsbruck represented heterogeneous subgroups of patients with varying manifestations of aHUS. Successful remission was observed in all subgroups of patients treated with Soliris. Alexion recently commenced enrolling patients at the first sites in its four investigational clinical trials for adult and adolescent patients with aHUS."

It's crazy to think that the labs that we submit each infusion, are setting protocol for the future!



Linda Burke said:
Skyler's Soliris infusion was today - another nice set of lab values! We're pleased to report the following:
Hct: 37.5 and HgB: 13.7
Platelets: 267
Creatinine: .32
LDH: 223

We're staying the course with 600mg of Soliris via IV infusion through Skyler's mediport once every 2 weeks. Looking forward to a good report on Coen's treatment, too, Jodi - all the best to you!
Late Breaking News-
We just learned today that our terrific team of pediatric nephrologists have decided on a new protocol for Skyler's next Soliris treatment. Initially, Skyler received one weekly 300mg dose of the IV drug Soliris for four weeks in a row. We then moved to 600mg of Soliris once every other week, and all the while Skyler has been doing well. Since only a handful of aHUS patients in the world are doing Soliris treatments (15 to be exact), we decided our approach would be to "follow the crowd" and also move to 600mg once every 2 weeks.
My mother always said, "Just because everybody else is doing it doesn't mean you have to, too. Use some common sense." - and I believe you might have gotten the same advice from your parent(s) as well! Common sense would indicate that if Skyler went into a Soliris-induced remission with 300mg weekly for 4 weeks, then probably 300mg every other week should keep him in remission. It's logical, and we hope that Skyler's terrific lab values will stay that way.
Since breaking known protocol for aHUS Soliris patients will cover new territory, I'll continue to note Skyler's lab values in this Forum.
Just an update. I did ask for LDH values today and for the first time, LDH is 230--the lowest ever. It looks like it is very consistent between Skyler and Coen, that it took 3 months of Soliris to halt all signs of hemolysis. Also, albumin is in the normal range for the first time, so kidney are still subtly continually improving the longer the HUS is in remission.

Another note, Coen came down with a bad bug a couple weeks that turned into a miserable cold, followed by an ear and sinus infection. Typically, this kind of infection would send his HUS into a full tailspin. Labs were done (just to be safe) and everything looks great still. He's recovering from his cold and ear infection with the help of antibiotics. I have been wondering if the Soliris would be able to maintain remission even with an infection, and so far so good!




Linda Burke said:
Jodi- such good news to hear that Coen is doing well. Did they draw an LDH level in Coen's labs today? It's a banner day for the Soliris crew because Skyler also had labs drawn prior to his 6th 600mg dose of Soliris and he, too, is doing well. Platelets are 307 Thou/uL and H & H are 13.8 and 38.1. Creatinine (a marker for kidney function) is .30 and we were so happy to see an LDH (a marker for aHUS disease activity) of 238. It was the first time we've seen an LDH that low since Skyler was diagnosed with aHUS, and a far cry from the "critical high" value of 2165 U/L Skyler had on April 1st, 2009 after 5 days of plasmapheresis.
I am SO grateful for Soliris and believe that Skyler currently has perfect kidney function due to the fact that he got his first dose of Soliris less than 2 weeks after initially presenting with aHUS. For Skyler, Soliris immediately unplugged the destructive aHUS machine with that first dose. At some point I'll wonder if we should try backing off dosage amounts/ frequency to 300mg every two weeks or to maintain 600mg but every 3 weeks. Logically, Soliris would probably leave Skyler's system unprotected at the end of 3 weeks so if we alter treatments, it would seem most feasible to try 300mg every two weeks. Obviously, there is a risk of relapse to consider - and there is no data/protocol for tweaking Soliris infusions. The aHUS lady in Germany who had Soliris to maintain her renal transplant went without Soliris for 8 months but relapsed and then went back on a Soliris regimen. Apparently, she did not build up a tolerance and had no issues with resuming her prior Soliris treatments.
Whoohoo back to you Jodi, and thanks for keeping us posted. Has your doctor been contacted by any other docs who have aHUS kids interested in possibly trying Soliris? If so, perhaps s/he would be kind enough to direct those parents to this website.
What are the requirements for being a candidate for Soliris? I've heard mixed things? Our Bryan has not been on dialysis, but he is also very young (only 5 1/2 months). Is there an age restriction?

Thanks!

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Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
  
• • • • • • • • • • • •
  
It is estimated that there are about 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
  
more factoids...

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