Soliris

[Martha L. Rusche]

Hi everyone,

Allison, my 17 year old daughter, was diagnosed with aHUS last July. As all of you know, it's been a roller coaster ride. She responded to plasmapheresis after her first episode and was able to get rid of her vascular cath in October. Unfortunately, Allison had another episode in December. Our doctor at Children's Healthcare of Atlanta, Dr. Larry Greenbaum, and his staff moved mountains to get Allison approved for the Soliris clinical trial. She had a port implanted in January and has received eight infusions. Her labs show that the Soliris is working miracles! We understand how truly lucky we are. Allison did not have an episode unti she was 17, just as Soliris was beginning to be used.

I do have some questions, however, for those of you that have any experience with Soliris. Allison is having some significant back pain, as well as muscle cramping. We're trying to decide if this is a side effect of the drug, or something else. Has anyone else experienced this?

We are truly grateful for this website and the chance to connect with others battling aHUS.

Martha Rusche

[Cheryl Biermann]

Hi Martha, I would ask if labs are indiacting a wild fluctuation of electrolites, before, during or after treatments...there is also the possibility that pain is coming from a damaged vascular system. That is all I know to tell you

[Svetlana Finley]

Hi, Martha
Anna is almost 12 not Soliris yet, she used to get muscle cramps and back pains. One doctor told me that might be growing pains or it could be luck of Magnesium and some one told me to give her Tonic water and that helps with the cramps. Now she is not complaining about it. Hope Allison will get those pains go away.
Keep us updating how she does on Soliris.;-)

[Sara Palmer]

Hello Martha
I wonder how aHUS can appear at the Age of 17? My Son Jack developed it Aged 5, I know there must be triggers but surprising it has taken 17 years to appear, do you know what trigger your Daughter had? On the aches and pains side Jadk used to have terrible leg pains usually ater plasma infusions, used to reduce him to tears and rub his legs for hours. When I asked the Renal Team and Docs they said it was caused when they filtered his plasma out of his blood as it removed the good nutrients too. Wishing you all the best and welcome to the site.

[Heather Still]

Hi Martha. My son, Ryan, has had aHUS for almost 8 years now - he'll be 11 in April. His most recent complaints are of back pain and leg pain after basketball practice. My brother is the coach, so I asked him if he thinks he may be over doing it and he says no. So I plan to address these issues at his next nephrologist appointment. He is not on Soliris, so it may be more kidney related than drug related. Glad to hear Allison is getting Soliris. Take care.

[Donna Kolp]

Hi Martha,
My son Jonathan is 17, and will start his trial of Soliris next month. He was diagnosed @ 8 1/2 Mos. old. I am curious on how your daughter feels, as compared to before. Jonathan is on dialysis, and while that in itself makes you feel yucky, Jonathan has not felt bad, ever.
I will keep your daughter and your family in our prayers!!!
Donna :)
Thanks Linda!!

[Jodi Kayler]

Hi Martha, My son Coen, 7, started Soliris in April of 2009. Since he has had aHUS since he was 11mos old, he is fairly good at articulating any side effects or how he feels. He has never complained about cramping or back pain since the start of the Soliris. Prior, he previously has had some muscle cramping when his calcium levels would go up or down unexpectadly due to changes in kidney function. I wonder if this could be your daughters issue? I don't what her kidney function is, but if her calcium level is shifting, it could be causing the muscle cramping. My other thought would be a side effect of BP meds. BP meds constrict the veins, so when Coen is dehydrated at all, he sometimes complains of "tired legs". Just a thought....Welcome. And so glad to hear your good news.

[Linda Burke]

Donna Kolp's son Jonathan is Allison's age and will be beginning clinical trials of Soliris next month - very exciting news. (While they're in Texas, I'm not sure of the their trial specifics) I've always been impressed by Donna's positive attitude, and you might both benefit from comparing notes about the Soliris clinical trials for your two teens. Best, Linda

[Phyllis Ann Talbot]

Hey Martha - glad to see you on here but sorry about Allison's back pain and cramping! Tell Allison Hyde says Hi! Linda - it's actually funny - Dr. Greenbaum is Hyde's long-term nephrologist as well - so he's been watching Soliris closely even before Allison for us - and he had already worked with Alexion on being a trial site - so hopefully that helped 'grease' the wheels for Allison a bit.

[Melissa Hearn]

Hi Martha,
We're also in Atlanta and my little boy Bryan is also on Soliris. I knew there was someone else much older who had started Soliris, but not much more. I'm happy that you've found your way to this site. It's a great place for communication and support with others dealing with atypical HUS. There's also a Soliris forum you may want to check out.

I'm not sure about the back pain and muscle cramping. My Bryan is only 11 months old (6 months when he started Soliris), so he can't exactly tell me what symptoms he's feeling. Jodi Kayler and Linda Burke may be able to better answer that particular question.

Welcome Neighbor! If you ever need anything let me know. We primarily see Dr. Sherwinter, but see Dr. Greenbaum on occasions. He's the one that schedules Bryan's infusions at Egleston.

[Linda Burke]

Whoo hoooo for Allison - that's great news!
You'll note that Dr. Sherwinter also in Atlanta is listed in our Home Page 'Doc to Doc' Registry as one of our gracious physicians willing to share his experiences with Soliris use, so perhaps he might have input to share with Allison's Dr. Greenbaum. At the University of Iowa, Dr. Brophy treats multiple aHUS patients and perhaps could share some light into your questions - not only has he donated his time and talents with the 'Doc to Doc Registry', but he is also a Member of this interactive website and can be contacted through this website via his member page. If he does not already have the info, I can email Dr. Greenbaum directly with the contact info (email, mobile phone, etc) for the chief medical officer at Alexion Pharmaceuticals, the folks who make Soliris, so they can discuss any common effects of Soliris in aHUS patients. Strangely, the only reports I've seen have been a behavioral side effect of "happiness" - I thought they were kidding at first, until I heard more. Hey, whose should complain of feeling "happy"?!! ;-D
Hope you find the answers you seek.....again, so happy for your family!