The Atypical HUS Foundation

Marissa had her biopsy this last Monday. We stayed at the hospital waiting for results til Wed. but came up with no answers...They don't believe that it is the hus causing the symptoms this time, but don't know what it is.  Hopefully we will have some kind of understanding by Christmas Eve...and go from there.  Dr. did say that he doesn't want to start soliris until he is sure it is an hus relapse.  

It is definitely frustrating not knowing as I am sure you all know where I am coming from.  

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Comment by Kimberly Tressler on January 3, 2013 at 1:16am

Praying as you learn about her new diagnosis and find what will help Marissa.  Sorry to hear she further complications. 

Comment by Sharon Madrid on January 2, 2013 at 9:28pm

Thank you Cheryl....I am of course doing my research so I appreciate info on who to contact...How would I contact either of the doctors you mentioned?

Comment by Cheryl Biermann on January 2, 2013 at 9:13pm

I don't know of anyone else, but Alexion or Dr. Ramuzi or Goodship, one of those experts might have more info.  In the meantime, you can post this to the rare disease aHUS page and see if anyone on that site can give you more answers.  Prayers.  I am so sorry you have this also to contend with, but thankful Marissa's doctors are on top of everything.

Comment by Sharon Madrid on January 2, 2013 at 7:23pm

Dr. called today with results from the biopsy.... He has diagnosed her with IgA Nephropathy, which is a kidney disease that is causing the blood and protein and possibly the scarring in her kidneys as well.  We talked about treatment which would be either Prednisone (which is so hard on Marissa) or Fish Oil which I am leaning more towards right now just because of the horrible side effects from the prednisone.  The Prednisone would be a 6 month therapy treatment and I am not positive on the Fish Oil therapy except that there are no side effects except for maybe burping fish oil.  Dr. mentioned that he is concerned with this new diagnosis because of her High blood pressure, the amount of protein in her urine and because of the kidney scarring she already has which it is uncertain whether or not it is from this disease or the initial onset of the aHUS.  He also mentioned that he only knows of one other person worldwide with both of these diseases (aHUS and IgA Nephropathy)and the person is an adult.  This weekend we will be doing a 24 hr urine catch, he also wants to increase her dose of Lisinopril which will take some messing around with since she is on two other bp meds as well.  He said that this does increase her risk of progression of kidney failure but there is no way to tell for sure what the outcome will be.

I am so thankful for her Dr. he patiently explained this diagnosis to me for close to an hour on the phone today, in no rush and making sure that my concerns and questions were addressed.  He and his team are amazing in the careful studies they have done to ensure the best care for Marissa, so while this is yucky news, I am confident that he will help us make the best decisions for her. 

Has anyone heard of this diagnosis with the aHUS. He still doesn't even know if the two are connected but he is leaning towards  the idea that they probably are, he just doesn't know where the connection is though.

Comment by Sharon Madrid on December 28, 2012 at 4:20pm

I spoke with the nurse at Marissa's Dr...she said that Dr. still does not have any answers as to what is causing the blood and protein in her urine.  So far the biopsy results have not given him any ideas on what the source of the problem is. He will be back from vacation on the 2nd and has a note to call me then regarding anymore info he is able to come up with along with some kind of plan or more testing. 

Wishing you all a very Happy and Safe New Year!

Comment by Svetlana Finley on December 27, 2012 at 12:37pm

Sharon, Anna's creatinine was also good with blood and protein in her urine, We will be praying, keep us updated!!

Comment by Sharon Madrid on December 27, 2012 at 10:09am

Thank you all for your input...I took Marissa in for labs yesterday, Creatinine is good .68 but urine is still very dark..(coffee colored).  I was expecting to hear from her Dr. by yesterday and didn't so I do plan on calling him today.  I will keep you all posted....love and prayers to you all!

Comment by Cheryl Biermann on December 26, 2012 at 10:35pm

I hope it went well with labs.  I never sat on it before Soliris, and our docs trusted our judgement.  Only once did we not wind up with a flare up that required hospitalization.  Don't feel bad for calling, you'll feel worse if she is sick.

Comment by Kimberly Tressler on December 26, 2012 at 6:06pm
I struggle with this as well. Honestly I could call doctor almost everyday with some sort of complaint or question. Lily has stomach pain and aches a lot. She will also have diarrhea one or twice, and headaches, is often tired, etc. I wish I could tell you when calling is necessary. I hope Marissa is feeling better today.
Comment by Svetlana Finley on December 26, 2012 at 4:26pm

I am totally agree with Cheryl, Anna's biopsy results also showed that she has more scarring then before, our dr thinks it was from low AHUS activities, specially only indicators on blood results are blood and protein in her urine. Our dr. contacted others with question what to do, because any amount of blood and protein does more damage to kidneys. Doctors from Canada and Europe all suggested to do Soliris and we did started. Try to encourage your doctor to contact others even Alexion (Soliris)  even i did some calls my self and ask Alexion to contact my dr about Anna's case. In your situation i won't wait to do labs till Monday, i totally understand that Marissa wants to take brake, but in order to safe her kidneys it is to act as fast as you can. The early you can catch it is better. May be with this tummy pain your doc will finally get her on Soliris, ask them to even just try and see if her blood and protein issue will go away. 

We will be praying.

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