Question about a possible side effect?

[Jodi L]

This is my first time posting to this forum. I have been following all of your stories and feel for all of you, good and bad! My question is for my son who was dx with SAA in 12/11. He was given horse ATG the beginning of 1/12. Had very similar experiences afterward with the serum sickness and pregnisone. He responded immediately to treatment and is currently taking Tacrolimus twice a day. He also takes Folic Acid once daily. He is now 17 years old and is doing very well. His last appt. (2 weeks ago) showed hemoglobins back in the normal range 12.3 his ANC count was 1420 (1500 is low range of normal) and the platelets are keeping at 78. The two main side effects are his sleeping pattern is off (even for a teenager) and he has developed terrible acne! The sleeping issue is somewhat under control but the poor kid has a face full of acne and has spread to his shoulders and back somewhat. Is this a side effect that might be similar to mouth sores for others? He is being treated at Children's Hopsital/Denver with an AA Hemotogist doctor that we just love. She has been great and says my son is responding unusually quickly! I say he is a walking miracle but he is still a teenager. ha Sorry for the rambling but just want to know abut the acne.

Thanks!

[Neil Cuadra]

Jodi,

Acne is a known side-effect of prednisone. Not all patients are affected in this way but it's one more reason why you'll be glad when your son can get off prednisone. However, the priority has to be on helping your son's recovery from SAA (I'm glad to hear it's going well!) so he may have to cope with insomnia and acne for now in order to make sure his blood counts stay stable. But let his doctor know of your concern and ask if there's a risk of scarring or if any dosage changes are called for.

[Jodi L]

Neil,

Thanks for replying but his doctors told us that back in January when he was on the prednisone. He's now been off it since mid Jan. so that should not be the cause. We have discussed it at every appt and I know that acne and insomnia is nothing compared to his precious life!! We'll try again at the next one at the end of the month.

Thanks again,

Thomas' mom Jodi

[edithr]

Hi Jodi,

My son is similar to yours, and also developed a bad case of acne since being diagnosed with SAA a year ago. It really sucked because the dermatologist couldn't do much but prescribe topical medicine until Eric was off the Prograf. His counts are good enough now so that he can take an antibiotic for it (doxycycline), it's helping a lot. We had to get the OK from his hematologist before the dermatologist would prescribe it.

Feel free to PM me if you'd like more info.

And so sorry you had to join the club, hopefully your son continues doing so well.

[Jodi L]

Edith,

How is your son doing now? I see that he switched to tacrolimus and then was off it altogether a month later! Why? And he was off all meds within 6 months of the initial ATG!! Wow!! Did he have the insomnia problems while on the meds? My Thomas has some ok days and then some really bad days where he can't fall asleep at night and so will go for 36+ hrs of no sleep (because of school or work-which he just quick yesterday) and then once he's asleep then will sleep for as long as we let him. I have had to call him in "sick" for school so many times so he can just sleep! He's trying so hard to be "normal" but he's not and I see from this forum that he never will be back to "normal" which just makes me so sad. But normal is something different for all of us.

Thanks for everything!
Jodi

[Hopeful]

Originally Posted by Jodi L

He's trying so hard to be "normal" but he's not and I see from this forum that he never will be back to "normal" which just makes me so sad. But normal is something different for all of us.
Jodi

Hi Jodi,
Try not to get too discouraged during these early days post-ATG. Your son is young, and he is an early responder. So, the odds are strongly in his favor for a good recovery. As his marrow recovers, his fatigue will diminish, and as he weans off the drugs, the side effects will also go away. If all continues to go well, Aplastic Anemia won't define his life, but rather it will be a source of inner strength for him. He'll go on to do all the normal things that he use to do. It gets better...it just takes time.