ATG - Cyclosporine side-effects

[clairekim]

Hello all,

My wife (36 years old, mother of 2 kids) was diagnosed with SAA end of October 2011. Since then, she had multiple transfusions (mostly platelets) and received her first ATG (horse serum) @ MD Anderson.

It's been 1 week since the ATG and she's been on Cyclosporine/steroid w. taper schedule/Neupogen shots. Her platelet is 2000, WBC is 2.2, and Hemo is 9.0.

As the days go by, she's getting more weaker. Cyclo pills are making it worse as she almost passes out after taking the pills (once at 9am and again at 5pm - 100mg each). She can barely walk. She's at her best condition way early in the morning when the cyclo is at its lowest concentration in her blood. She also had some mild hives forming on her legs and are since disappeared. Her hands and feet are so hot that she has hard time sleeping. She also had an itching problem couple of nights ago.

Are these normal responses to the AATG/Cyclo regime? We told the doctor and he seemed to be less worried about these effects than continuing her regime.

She's getting her platelets every other day.....

Thank you so much for your help...
David Kim

[Hopeful]

Hi David,

If it has been only one week since she received ATG, she is likely suffering from serum sickness. It is thought that this can occur up to 2 weeks after ATG is complete. So, hopefully she hasn't started the prednisone taper yet or you may want to talk to her doctor about her dosing. Itching, hives, and joint pain are symptoms of serum sickness.

I don't think the cyclosporine alone is the culprit here. 100 mg twice a day is a pretty low dose. Also, it takes at least a month or two for the cyclosporine to build up in your blood. They should be checking her cyclosporine trough as well as her creatinine and BUN readings to make sure her kidneys are handling all the different drugs though.

I hope your wife will see a response.

[triumphe64]

Hopefully you will both be able to particpate in the AAMDS walk in San Antonio in March.

http://www.aamds.org/hope-steps-cure-walk

Bring friends

[kjraimondi]

Thanks for sharing about the walk. I'm in San Antonio!

[clairekim]

Thank you Hopeful.

We will give it few more days and see if these side effects improve. I just hope her platelet counts go up. She has none at the moment....

[clairekim]

Thank you for the walk information!
We are in Austin, TX! We will surely show up for the walk. Hope to see you call there!

[Lisa V]

David, the ATG process itself can really eat up platelets. Ken had to be transfused Plts every couple of days while he was getting ATG. Hopefully the transfusions will get farther and farther apart!

[clairekim]

Thank you all,

HOw long does the serum sickness usually last?

[Karenish]

Mine only lasted a very short while. The night after I received the first dose I had flu like symptoms, second day it had gone. Then a couple of days later got an itchy rash - that was dealt with by piriton. Then a couple of days after that got bright red hands, then a bit of jaw ache and achey shoulders. By the end of the week nothing.....we waited for 3 weeks just in case and nothing. So for me I would say the sickness lasted about a week and that the name serum sickness was far more scary than the thing itself. Although hasten to add everyone is different. xx

[3blankets]

Hi,

I think it is serum sickness too. I started with a rash after day one of ATG and it lasted a week. I do remember it being very hot and very uncomfortable. I am sorry to hear your wife has to go through that. About two weeks after the AtG I started to have the worst joint pain. I tried to get through it at home with pain killers but it just got worse as the day went on. I ended up having to take an ambulance to the hospital because I couldn't move! But after being admitted, I was feeling better in a day or so. Best of luck!

[Susan]

Hi David,

How is your wife doing? Did she get in for platelets soon after her treatment? Please let us know, and tell her we hope she's feeling much better by now.

Suz