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!

Anyone ever look at Low Dose Naltrexone?

  • ytsejam02
  • Topic Author
  • Offline
  • 44 y/o male, married father of 3 girls. Diagnosed 4/24/17 with a count of 22. Currently taking 50mg Promacta. I primarily follow a Paleo diet. I'm an active Crossfit member and biker.
More
8 years 4 months ago #59230 by ytsejam02
Anyone ever look at Low Dose Naltrexone? was created by ytsejam02
My wife came across this, and was curious if anyone had any experience with Low Dose Naltrexone. It's an anti-inflammatory:
www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/
www.lowdosenaltrexone.org/

There's nothing I've seen relative to ITP. But lots of claims, and of course the NIH article, on autoimmune uses.
Anyway, just thought i'd ask.
Thx,
Jay
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
8 years 4 months ago #59232 by Sandi
Replied by Sandi on topic Anyone ever look at Low Dose Naltrexone?
Funny you should ask. It's come up quite a few times over the years, but no one has ever actually been able to talk a doctor into using it. I tried to talk my Rheumatologist into it once (Lupus) and she adamantly said no. So to answer your question, no, there is no known track record regarding ITP and Naltrexone that I am aware of.
  • thomaskm
  • Offline
  • Male 69 Diag. April 2017 in ER with Petechiae from knees to toes 4 oral cheek blood blisters 3000 count. 3-IVIG rescues, 4, 4 day 40mg Dexamethadrone blasts. Best read 416,000 11/24/2020 (Covid+ bump) On Nplate maintenance every 3 weeks
More
8 years 4 months ago #59256 by thomaskm
Replied by thomaskm on topic MS patients using LDN have developed ITP.
According to this report nn.neurology.org/content/1/3/e25.full
  • 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.
More
8 years 4 months ago #59257 by mrsb04
Replied by mrsb04 on topic MS patients using LDN have developed ITP.
Just checked Naltrexone on medicines.org.uk is says a 1:1000 to 1:10,000 chance of causing ITP
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
8 years 4 months ago #59260 by Sandi
Replied by Sandi on topic MS patients using LDN have developed ITP.
There are treatments for ITP, such as Rituxan, that list ITP as a side effect. It's always a risk, we just don't always know how great the risk is.
  • ytsejam02
  • Topic Author
  • Offline
  • 44 y/o male, married father of 3 girls. Diagnosed 4/24/17 with a count of 22. Currently taking 50mg Promacta. I primarily follow a Paleo diet. I'm an active Crossfit member and biker.
More
8 years 4 months ago #59261 by ytsejam02
Replied by ytsejam02 on topic MS patients using LDN have developed ITP.
Interesting read.

I find it frustrating though. The report itself admits the following:
"Our patient had platelets at about 120 × 109/L for at least 3 years prior to diagnosis with ITP, and it is possible that the association with LDN use is spurious."

Which is kind of how I feel about my own situation. I could look to the 2 weeks I was on Clarithromycin which wasn't too far removed (~4 weeks) from my diagnosis, or the stress event (car accident) that occurred exactly 2 weeks prior, maybe both, maybe neither. And sadly, most likely never know.
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
8 years 4 months ago #59263 by Sandi
Replied by Sandi on topic MS patients using LDN have developed ITP.
That need to know will fade. I went through it too. I ended up accepting that I most likely was just genetically predisposed and something came along and triggered it. If it hadn't happened when it did, it probably would have happened at some point.
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 - 2025, 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