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!

Experiences on 6MP or N-Plate

  • 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
More
13 years 1 month ago #31895 by pegstirling
Experiences on 6MP or N-Plate was created by pegstirling
Hi Everyone: Aaron is 17 but I think close enough to adulthood to get advice from the grownups. He was dx at age 5 and went into remission at age 12. Started dropping January 2012 and spent the summer 7-9,000 and we treated and now he lives at 0-1000 for the most part with jumps to 4-5000 (no difference really). 2 doses of IVIG with one week good response but 3 days of headaches, 3rd dose we didn't get a bump, absolutely no response to prednisone or WinRho or Rituxan. After Rituxan, Aaron got severe stomach problems which we found he had gastritis. Question for me is why? I believe he is possibly has hy.plori. First gastro was a big A.. and 2nd one was great but with these counts he cannot do the tests he wants endoscopy and/or colonscopy. His blood test was negative, trying another stool test. If it comes out negative, we really need to do the tests. The Nexium is keeping the symptoms in control, but once a week or so it lets us know that he aint fixed and it is still there (whatever it is). He does well, no real bleeding so his body has handling it well. He has had a rough year with school being 11th grade but we are trugging along.

I am thinking that we need to find something that can get his platelets up and stay up for a few months so we can do these tests. I remember 6MP from way back when but I need to hear some experiences. I guess N-Plate is also an option, would like to hear about that, too.

Thank you for your time.

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

More
13 years 1 month ago #31903 by chasty
Replied by chasty on topic Experiences on 6MP or N-Plate
I am currently on Nplate weekly. I have had pretty much most of the treatments available and Nplate is the only thing both pre and post splenectomy that has worked and is currently working. I had 2 failed splenectomies.

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

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.

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.