Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > AA
Register FAQ Search Today's Posts Mark Forums Read

AA Aplastic anemia

Reply
 
Thread Tools Search this Thread
  #1  
Old Sun Apr 15, 2012, 11:41 PM
Jodi L Jodi L is offline
Member
 
Join Date: Feb 2012
Location: Lakewood, Co
Posts: 3
Question Question about a possible side effect?

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!
Reply With Quote
  #2  
Old Mon Apr 16, 2012, 01:30 AM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
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.
Reply With Quote
  #3  
Old Mon Apr 16, 2012, 09:31 AM
Jodi L Jodi L is offline
Member
 
Join Date: Feb 2012
Location: Lakewood, Co
Posts: 3
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
Reply With Quote
  #4  
Old Tue Apr 17, 2012, 04:46 PM
edithr edithr is offline
Member
 
Join Date: Feb 2011
Location: 30 mi West of Cleveland
Posts: 86
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.
__________________
Edith, mom to Eric, dx 2/11 at age 15 with SAA, began ATG/CsA 3/11, switched to Tacrolimis 8/11, off all meds 9/11 and is now considered to have bone marrow failure not otherwise specified.
Reply With Quote
  #5  
Old Wed Apr 18, 2012, 09:05 AM
Jodi L Jodi L is offline
Member
 
Join Date: Feb 2012
Location: Lakewood, Co
Posts: 3
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
Reply With Quote
  #6  
Old Fri Apr 20, 2012, 01:37 AM
Hopeful Hopeful is offline
Member
 
Join Date: Jan 2009
Location: California, USA
Posts: 766
Quote:
Originally Posted by Jodi L View Post
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.
__________________
55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Danazol side effect pvinod AA 5 Sun Dec 18, 2022 03:42 PM
Vidaza side effects: enlarged spleen veola Drugs and Drug Treatments 0 Sun Jul 17, 2011 01:54 AM
Revlimid side effects Rosemary Drugs and Drug Treatments 4 Mon Apr 25, 2011 12:05 PM


All times are GMT -4. The time now is 12:47 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org