Friday, June 19, 2009

Low Dose Naltrexone and Parkinson's Disease III: Dosage-Timing Updates

LDN Updates and Finding a Compounding Pharmacist

We wrote about Low Dose Naltrexone on May 31, 2009 as a possible PD treatment adjunct. On June 8, 2009 we posted an update on the possible side effects.

Naltrexone (Reviva) is an opioid blocker, it blocks all of the opioid receptors in the brain. It was approved by the FDA to treat recovering addicts. Since it is generic, we won't see additional presentation to the FDA for other conditions.

The low dose version triples the body's production of endorphins which supposedly kicks the immune system into full operation. The drug doesn't fight the diseases directly, the body fights the diseases after the immune system is back to normal. The LDN (about 4.5 mg daily after titrating up from 1.5 mg) effectiveness lies in its intermittent blockage of the opioid receptors allowing for endorphin levels to increase for 1-3 days.

A special Thank You to the reader, Solutions for Stressed Caregivers, who took the time to post a comment which provided a link to the recent and first Low Dose Naltrexone Conference held in April, 2009 in Glasgow, Scotland.

SSC also noted that the dosing time recommendations had changed. According to what we read daytime is now a favored time. However, at the conference it was observed that in chronic fatigue syndrome, a morning dose is recommended due to sleep issues. MS patients who have found significant help through LDN, the times should vary according to need and sleep requirements.

I thought that we had mentioned that liquid LDN was available but what we didn't realize was that it could actually be compounded with care at home. Although that is not something we would try or recommend, we did find a link to advice for doing just that. Mr Delaney has also provided practical suggestions for finding a compounding pharmacist. If you reside in the United States you will want to make sure that the pharmacy or pharmacist belongs to the Professional Compounding Centers of America. In the US you can also contact the PCCA. For those in the UK, the contact information is in the article. Many thanks to Mr Delaney.

Remember, before adding supplements, adding a medication, changing dosage and times, or stopping a medication, always consult your physician.  And please let your doctor know about any seemingly benign supplements you are taking because there can be interactions to certain medications.

Although the Parkinson's LDN database at LDN World Database is small, it will provide some helpful information.  If you are using LDN for PD or know someone who is, it would be a great idea to make your addition to the database.

Addemdum 4/04/11
Just a cautionary:  Some medications may do not work well with LDN for some people although they might work just fine for you - we'll be adding to this list:
Clonazapam (klonopin), a benzodiazepine
Prednisone
We'll be expanding this list

Addendum 6/27/11
I just read a very inportant tip for PwPs taking LDN. We be pass it along because of the Parkinson's risk of falls and breaks and the very real possibility that you could be given a narcotic painkiller in such an emergency.
If you are taking Low Dose Naltrexone, it would be a good idea wear a medical alert bracelet/pendant/dogtag stating just that: Low Dose Naltrexone (4.5mg) rather than LDN which people might not recognize.
It is important that the information be directly available before treatment is initiated using a painkiller which will cause you incredible pain if you are on LDN which blocks certain receptors.
And of course carry a wallet card which lists allergies and other pertinent information.

Addendum 9/27/11
Dr Weintraub reports that clinical trial NCT01052831 is still enrolling for Parkinson's disease patients in the Philadelphia, PA area.  This trial is being funded by the MIchael J Fox Foundation.

3 comments:

  1. A public apology to the gentleman who asked this question many months ago: R.W. you asked whether you could purchase LDN at a local pharmacy.

    It is unlikely that a local pharmacy will have Low Dose Naltrexone but with a prescription it might be obtainable at a local Compounding Pharmacy.

    ReplyDelete
  2. I think it's important that if you don't go to a compounding pharmacy and choose to do it at home it really does need to be done with care as mentioned above. It seems that it would be best if we always could find a compounding pharmacy nearby. The information provided about how to find a local compounding pharmacy is great and much appreciated.
    http://www.pottershouserx.com/

    ReplyDelete
    Replies
    1. Although we usually do not publish comments with links, in this case an exception has been made for those who live in the Peoria, Arizona area. One less hoop through which to jump especially with the horrible decisions about compounding pharmacies recently.

      Here's a cut and past link to finding an ACHC accredited compounding pharmacy in your area:
      http://achc.org/resources/accreditedLocations

      This is cut and paste link to finding a PCCA pharmacy:
      http://www.pccarx.com/contact-us/find-a-compounder

      I'm sure Robbie Hardy can provide more links and hope this will be done.

      Delete

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