The Atypical HUS Foundation

I have been meaning for a while to update this blog.  

At some point in February, we finally switched Phoebe to Soliris.  We were watching the factor H autoantibodies decrease.  We were given hope that her autoantibody level would go to zero.  They started at above 2,500 and they decreased to 2,000, and then1,200, and then 300.  At that point, we still decided to switch to Soliris for several reasons:

1. Plasma was scaring us, and it was taking 12 hours 2-3 times a week.

2. I started to think that I would rather have her on Soliris for several months after reaching zero with the autoantibodies.  As much as I had hoped to be done with it, I didn't want it to manifest again and cause Phoebe permanent problems.

Soliris has been really great.  And the company has been very good.  We had some issues with getting room at the hospital to receive it.  Plus, no one there had seen the stuff and they didn't know necessarily how to handle it.  Our doctor's nurse had to come to the hospital to administer it.  But our case manager helped us arrange home health, and Phoebe is now receiving Soliris in the comfort of her home.  So we are happy with that.  

In early March, Phoebe's autoantibody count climbed to 800 and then to 1,200.  It has been at 1,200 now for almost 8 weeks.

We are stilling giving her Prednisone and Cell Cept, but my wife and I are looking to get a second or third opinion of what to expect from this point forward.  Should we keep suppressing her immune system with the hopes of eradicating the autoantibodies?  Should we stop the immune suppression?  That is the issue we are working with at the moment.

We are still waiting for Phoebe's genetic test to come back.  We sent it out on January 7.

I will update again at a later date.  

All of Phoebe's numbers besides the autoantibody level were good before we switched to Soliris, but the numbers got better and have stabilized.  It does seem to be a miracle drug.  I wish it didn't necessarily have to be an infusion every other week, but from our experience of three months of plasma, it is 100% better than that.


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Comment by Michele Haymes on May 19, 2013 at 3:30am
Hi Brett, My name is Michele and my son Jeremy, now 7 was diagnosed with aHUS in August 2011. In December, 2011 we where told that his particular aHUS was Factor H autoantibodies. Jeremy is now in remission and has been so since Feb 2012, which is when we ceased Plasma Exchange which he was receiving daily at the beginning of the episode, then 3 weekly for about 2.5 months, then 2 weekly for a while until his body could cope with a weekly exchange. In Jan 2012, we commenced immunosuppressants, Azathioprine and Prednisolone in our case. We gave him is final dose of Pred in January this year ( which we were all so relieved about as he had put on a significant amount of weigh and had stopped growing. He is only little anyway, so there is a notable difference between him and his school friends.). In terms of antibodies, I was interested in the numbers you quoted on your update on Pheobe. Jeremy's first measurement of antibodies was in December 2011 and they were 3000. So this is the number he had when he was receiving regular plasma exchange. We tested him again in April 2012 at which time he had been off the PE for 2 months, and had been having immunosuppressants for 3 months. Despite the new medication, his levels increased to 5000. We tested him in March this year, two months after stopping the Pred and his antibody level increased to 11,000. Clinically Jeremy is well and all his routine blood tests are fine so the hospital is not sure on how to treat Jeremy. We have decided to do nothing different at this stage. Soliris is not an option for us as we live in Australia and the drug is not Approved in our country. I'm hoping the hospital will send for another update on his antibody level soon to see if the levels are still increasing. It certainly is scary not knowing when and if he will trigger again, especially when his antibody levels are on the rise. I hope Pheobe continues to respond positively to her treat regime. It's amazing how resilient little children can be. Cheers, Michele
Comment by Svetlana Finley on April 27, 2013 at 11:10pm
Great to hear your update, Anna still getting just Soliris with out Prednisone, we didn't check her levels antibodies yet probably get it done sometimes this summer. Let me know what other options you looking at. Also with us Plasma is not really an option only because she does sports and with plasma exchange you have to have permanent line and Anna developed so many allergies to all the dressing stuff.
Comment by Cheryl Biermann on April 25, 2013 at 9:56am

Great news:) If I were trying to make a decision, I would surely seek Iowas input, just a thought.  Good luck, may God grant you peace.


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The Atypical HUS Foundation encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.

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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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