Platelet Disorder Support Association

Join Us:

Become a Member

Support Us:

Make a Donation
    Remember Me     Forgot Login?   Sign up   •  Web site Help & Info

!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

Cellcept info please!!!

More
9 years 10 months ago #47283 by JCHCW23
Cellcept info please!!! was created by JCHCW23
Hello! My 10 year old son was diagnosed with ITP 3 months ago when we noticed strange dark bruises on his body. He has had 3 WinRho treatments which only held his platelets for 10-12 days before being admitted again. He has had 2 IVIG treatments which have lasted longer than the WinRho. He had his latest IVIG yesterday and the dr wants to put him on CellCept since his levels are not staying up for long. Has anyone else or anyones kids been on CellCept? I see it is used for anti-rejection for transplants so the possible side effects make a little nervous! Any info would be greatly appreciated!!!

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
9 years 10 months ago #47286 by Sandi
Replied by Sandi on topic Cellcept info please!!!
I would get a second opinion before using CellCept on a child. It's not done often. How are his symptoms when counts are low?

Please Log in or Create an account to join the conversation.

More
9 years 10 months ago #47287 by JCHCW23
Replied by JCHCW23 on topic Cellcept info please!!!
I am thinking the same thing!! He gets brusises with hematomas, petechia, very pale...he is a very active boy who plays every sport so when his platelets are low-he is miserable because he can't play sports!! He has had a bone marrow biopsy and numerous other tests-thankfully everything is coming back negative but it is so frustrating!!

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
9 years 10 months ago #47292 by Sandi
Replied by Sandi on topic Cellcept info please!!!
Yes, ITP can be frustrating. It's tough to balance allowing him to have a normal life without over-treating. Long-term side effects can be scary.
The following user(s) said Thank You: JCHCW23

Please Log in or Create an account to join the conversation.

Moderators: jaycharness
Platelet Disorder Support Association

Donate

About

Stay Informed

Follow Us

IMPORTANT!

The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.


Platelet Disorder Support Association
8751 Brecksville Road, Suite 150, Cleveland, Ohio 44141
Phone: 1-87-PLATELET | 877-528-3538 (toll free) | or 440-746-9003
E-mail: pdsa@pdsa.org


© Copyright 1997 - 2024, Platelet Disorder Support Association. All rights reserved.
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.


Privacy Policy and Terms of Use