Platelet Disorder Support Association

Join Us:

Membership Matters

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!

Rituximab

More
11 years 8 months ago #42617 by acook
Rituximab was created by acook
My son has was diagnosed in May. The IVIG is not working anymore and neither are the steroids. The doctors want to try a drug called Rituximab. I am leery. Had anybody had experience with this drug?

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

More
11 years 8 months ago #42619 by alisonp
Replied by alisonp on topic Rituximab
For my son it was an easy but ineffective treatment. Saying that though, he seems to have stayed mainly in the 20-30 zone since he had it, whereas before, his count was normally 10-15. So maybe it worked a bit.
Are you in the UK? I ask because Drs are more conservative with treatment over here, so if they are suggesting it, they probably think he needs to try something to keep him safe.

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
11 years 8 months ago #42623 by Sandi
Replied by Sandi on topic Rituximab
How old is he and what are his counts and symptoms?

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

More
11 years 8 months ago #42625 by eklein
Replied by eklein on topic Rituximab
If you search the discussion board, you will find lots of experience with Rituxan. Many had remissions, many had no effect, a few had possible slight increases, and some had serious non-fatal reactions.
I had a remission.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
The following user(s) said Thank You: acook

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

More
11 years 8 months ago #42628 by acook
Replied by acook on topic Rituximab
I am in the United States. He's counts two weeks ago were at 1000. He had an IVIG and brought them back up to 16,000. They feel it is not effective anymore and want to try this drug. He is very active in sports and right not he is benched. :(

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

More
11 years 8 months ago #42632 by eklein
Replied by eklein on topic Rituximab
It sounds like your son is young. You should post your question on the parents folder, some parents may only monitor that folder. Sandi, maybe you could move this over there?
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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

More
11 years 8 months ago #42634 by acook
Replied by acook on topic Rituximab
He is 10.

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
11 years 8 months ago #42647 by Sandi
Replied by Sandi on topic Rituximab
Moved. ;)

It's hard to know when to use a treatment like Rituxan. You have to weigh the benefits vs risks and also consider quality of life. Rituxan has given many people remissions but it is also a heavy duty treatment that should not be taken lightly. Most of the listed side effects are very, very rare though and mostly affect people who are immunocompromsied or those who have other health issues.

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

Moderators: jaycharness

You’re not alone. We have answers! Contact PDSA to connect with life altering information, resources and referrals. 440.746.9003 (877.528.3538 toll-free) or PDSA@PDSA.org.

Platelet Disorder Support Association

Platelet Disorder Support Association
8751 Brecksville Road Suite 150
Cleveland, OH 44141
440.746.9003  |  pdsa@pdsa.org
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.

© Copyright 1997 - 2026, Platelet Disorder Support Association. All rights reserved.

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.