- Posts: 37
- Thank you received: 3
!!! 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!
Rituxan success no result before child vs adult
- pegstirling
- Topic Author
- Offline
- My son, Aaron, dx at age 5 (5/2001), though he was in remission for 5 years after a vaccine, came out of remission and lives at 3k. Did 5 years of treatment with but then stopped working, back at 3k. He is basically non responsive to all regular treatmen
Not big on treatments in general. Thanks for any advice. It's been years since I've been here. When I found this site in 2001, it was so helpful.
Please Log in or Create an account to join the conversation.
- Hal9000
- Offline
- Give me all your platelets and nobody gets hurt
I've read/skimmed through many old PDSA postings, such as yours, and made notes along the way. The goal being to try and collect what does and what does not work given one's steroid and IVIG responses. The results can be seen in my ITP treatments table.
From my notes, what I would ask you is if you've asked your doctor about 'Fostamatinib' - which is a newly FDA approved drug for ITP?
Please Log in or Create an account to join the conversation.
- pegstirling
- Topic Author
- Offline
- My son, Aaron, dx at age 5 (5/2001), though he was in remission for 5 years after a vaccine, came out of remission and lives at 3k. Did 5 years of treatment with but then stopped working, back at 3k. He is basically non responsive to all regular treatmen
- Posts: 37
- Thank you received: 3
He never responded to IVIG as a child so never tried again.
I will look at the new ones.
I prefer not to treat but it's scary being at 1-2k all the time. Got spoiled last 5 years.
Thanks for your advice.
Please Log in or Create an account to join the conversation.
- Hal9000
- Offline
- Give me all your platelets and nobody gets hurt
pdsa.org/discussion-group/13-general-discussion-for-parents/26912-update-on-aaron-down-to-1k.html#29132
Now that I re-read your post, going slowly from 2k to 30k (at age 8 from Rituxan) sounds like a partial remission. Fostamatinib sounds less likely to be useful with that occurance.
What dose of Nplate was he on? Was it pretty much the same dose throughout the 5 years?
I assume he's already tried Promacta and it didn't work - hence it's not being considered now. Or, is the possibility of remission from Rituxan the key aspect?
Please Log in or Create an account to join the conversation.
- pegstirling
- Topic Author
- Offline
- My son, Aaron, dx at age 5 (5/2001), though he was in remission for 5 years after a vaccine, came out of remission and lives at 3k. Did 5 years of treatment with but then stopped working, back at 3k. He is basically non responsive to all regular treatmen
- Posts: 37
- Thank you received: 3
I opted against Promacta 5 years ago because of the liver issues. Scared me. And considering he is non active and overweight, to me, not an option at this time.
Yes, Rituxan is one that I have over the many years that I saw people do well on consistently enough that I am reconsidering it. As you mentioned, I guess he did a slow bump and we are pulling his records from 2012 to see how he did. I have all his counts somewhere but after my divorce and moving from a 4 bed house to tiny apt, ugh I think in storage.
After your comment of minimal response, after I find out how he did in 2012, going up slowly even to 20k is better than living at 2k, which he did 2011-2012. Aaron does well at these low numbers, he had 2 bone marrow biopsies with no bruising.
We had great results on special diet but I was stay home mom than and any slip caused crashes (and a father who liked sabotage), I gave up on that. If I could Aaron to take charge of his diet, I know that would be good for him and his ITP. But he won't. Will keep working on that, his crazy work schedule doesn't help.
Thanks for your input. It was helpful. I had not thought that 30k is better than nothing. Other issue I know with Rituxan is the vaccine immunity. At age 8, they said it didn't affect his but that was fresh in his system.
Tidbit of info. When he was in remission, we sent him to Sweden to Boy Scout World Jamboree in 2011. Before the trip I opted to give him the Meningococcal vaccine since he was gonna be with kids from all over the world. It was within that 6 months that he started his decline. I believe this vaccine affected his ITP.
But the alternative if I didn't give was worse.
Thanks again. Feel free to put any other thoughts out. I'm so out of loop and frankly overwhelmed from my life...
Please Log in or Create an account to join the conversation.
- maria3132
- Offline
- Posts: 229
- Thank you received: 41
A thought: this is the fourth time i see mention of Sweden in the last few days on this board (one girl's mom, Johnny, peg, and myself). I know Sardinia in Italy has a high incidence of a thrombocytopenic disorder (I forget which), but could there be something in the Swedish environment too?
Please Log in or Create an account to join the conversation.
- Hal9000
- Offline
- Give me all your platelets and nobody gets hurt
It appears that there are two antibodies at work in this case. Let me explain. The previous partial remission is good evidence of row 1 in my table. That's one antibody. The flaky/unusual steroid response supports this notion as well. The high dose of Nplate is good evidence of row 4, the second antibody. The one week IVIG response supports the existence of row 4 as well.
In this particular dynamic the contribution from each antibody is 'additive'. It can be viewed as: the contribution from row 1 plus the contribution of row 4 adds up to the Nplate '10' dose. For example, a 2 Nplate dose can compensate for row 1 and a 8 Nplate dose can compensate for row 4. That gives: 2 + 8 = 10. As you can see, row 4 is very difficult to overcome. The numbers here are just examples but are fairly typical.
On the vaccination/flu making things worse. The question that comes to my mind is which of the following happened.
- Row 1 antibody became worse
- Row 4 antibody became worse
- A new antibody is now in play, either row 2 or 3
I could easily be wrong but I wonder if the first one of these may be the case.
The nice thing about row 1 is the number of options available - as you can see in my table. Certainly Rituxan is one option. With that, the only thing I would suggest would be see if the doc could jack up the steroid dose during the four treatments. I'm not that familiar with steroids but I wonder if 1 to 2 mg per kg would be good. Those that get higher steroid doses during Rituxan seem to have a higher likelihood of good results. A more profound option with greater success chances would be to start Azathioprine treatments and then do Rituxan. Finding a doctor with experience with that treatment regimen might be a problem.
Another row 1 option is just a Dex pulse. But in this case taking large doses of Nplate concurrently bears a risk of higher than desired counts with the combination. Maybe a lower 20 mg pulse first, then a higher/normal 40 mg pulse.
There are lots of other ways to attack the problem. Lots! Trying Fostamatinib (safer) or Cyclosporine make sense as well. Those would have a large impact on row 4 antibodies but little/no effect on row 1. So, even if Cyclosporine treatments caused a row 4 remission, an Nplate dose of 2 or so would still be needed if row 1 antibodies were not in remission.
Lots of information here. Hope this helps.
Please Log in or Create an account to join the conversation.
- mrsb04
- Offline
- ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
- Posts: 2171
- Thank you received: 630
Please Log in or Create an account to join the conversation.
Stay Informed
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.