Hives

[Terry Huber]

Has anyone had or heard of hives being related to this disease? Jacob seems to break out every ten days and is misserable! It seems like we can't go the three weeks that the doctors want us to for the FFP and epogen.

[Sharon Madrid]

Marissa broke out in hives once really bad just a few minutes after her plasma pheresis had finished. Another time she started to break out but thankfully it ended with only one hive and oddly enough they hadn't even started running the plasma thru before she broke out.

[Terry Huber]

I believe they are hives, the doctors have seen them, they are red, swollen and he gets them all over his body. Sometimes he is just really swollen in the face (eyes, mouth neck). Jacob says they hurt and itch ALOT! I would be curious to hear about your tests. Jacob's brief history; he got violently sick back when he was 1 1/2 and has had these "hives" ever since, he was tested at National Jewish for allergies and none found (no blood was drawn as they could not get it at that time, he was only two) he has tried steriods, yuck! He has been on prescription benydryl and zantac and they only help for a time then the hives come back even worse. He stopped having the hives a month before he got so sick again and was diagnosed with atypicalhus and since July he has been getting them back again. His numbers aren't really terrible, one doctor has found that factor H deficiency can also cause uticaria....we are all very confused. Thanks for all of your help.

[Cheryl Biermann]

Are you absolutely sure it is hives? Next time, make sure the medical professionals SEE him when he has hives, take him in. When Nathan had his episode, it didn't look like hives, just swelling-that is why they tested his blood...I do have those tests for you if you would like them. I hesitated to forward these because the condition they are testing for can be serious and scary. It is so rare also. I am hoping you are right that it is the hives! If it is only in his face and neck area, that is an indication also. Let me know, I'll be back Monday and I'll bring thoses tests with me.

[Terry Huber]

Jacob had the hives really bad and he went in last friday for FFP and epogen and within three hours the hives were gone and he just had the bruising left and by Sunday, he was clear. I think there is something else that is causing the hives, not the treatment because he gets better all around (mood, energy and color) with the treatments.

[Svetlana Finley]

Anna still gets hives now then, her last treatment was in April 2010. We will have dr. app next week i will be asking q about hives. I will let u know what they say.

[Cheryl Biermann]

Hi Terry,

Nathan had periodic hives due to his FFP transfusions. We gave him Benadryll before transfusions and it helped.

After he was on dialysis, he also had severe hives and swelling of his face and neck, although his problem was not due to the disease, it is in the literature that some people experience this. Give me some time, I know I've blogged about it, I think it may have the labs on the blog you need to do to see if it is related.

I would definitely see about getting a epi-pen for him. Good luck.

[Terry Huber]

Thanks, it seems he gets the hives inbetween the FFP treatments. Once he gets the FFP the hives are gone within a day. Another mystery with this illness.

[Jessica Olivia Frysz]

I honestly don't know anything about hives and aHUS. However, like Swetinana has said, it could be a reaction to the FFP. Having aHUS myself, I have experienced dry skin, mainly because of the the dialysis treatments I receive. But, hives sounds like it could be a medicine reaction.

[Svetlana Finley]

Anna used to get hives from FFP, they had to put her on hydroxyzine (attarax) allergy meds for hives. every time we saw one she had to take the pill, we never waited for the second to pop, she was miserble when she got them first time they had. Then on the day of FFP she had to take Prednizone and Attarax to prvent hives during the treatments and at home she only used Attarax when we saw one coming. It worked very well.