Trying out Something New for M

On December 18, 2003 I started something called LDN, which stands for Low Dose Naltrexone. Originally used on drug addicts, Naltrexone in much higher doses of over 100 mg affects the brain’s response to narcotics. But experimentation has shown that in low doses of 1.5 mg to 4.5 mg, the medicine has the effect of slowing the progression of M.S. and alleviating some of the symptoms. Some anecdotal stories even describe persons who have a progressed from being dependent on a walker to being able to walk with a cane, or persons who primarily used a wheelchair and only occasionally a walker, being able to go to primarily using a walker and only occasionally a wheelchair.

I have been in a wheelchair since 1985, and had no real expectations of major improvements or changes and so far I have been right. However, I have noticed a few significant changes. For one, I work the night shift and on the way home in the morning -a long drive of thirty-three miles - I very frequently was fighting to stay awake and, to be honest, was often not a safe driver. But within a few weeks of starting the LDN I found that I was fully alert while driving home. Another change I have noticed is that my bladder capacity seems to have increased somewhat. And a significant, and welcome, improvement involves my showering. In the past, I frequently needed a strong boost to get onto my shower bench and always needed assistance in getting from the bench back into my wheelchair. However, since starting the LDN I am now able to get on to the bench with hardly any assistance, and frequently I am able to get back into my wheelchair with only some assistance. Needless to say, my attendants welcome this change. I still have days I need more assistance than others, but overall, I need less help.

Another potential benefit of LDN, which only time will demonstrate, is whether or not the progression of my M.S. is being slowed by taking LDN. Anecdotal stories seem to support to this, and if this is true, it will make me a very happy person. To read more about LDN and multiple sclerosis, there are a couple of web site pages full of information and personal stories about how LDN has helped. One of these, http://www.lowdosenaltrexone.org/ldn_and_ms.htm is the multiple sclerosis page of the Low Dose Naltrexone web site, and to read a wide range of personal stories go to

http://www.lowdosenaltrexone.org/others.htm .

The only negative side effect that is consistently mentioned is that for the first few weeks of taking LDN there has been some sleep disturbance reported, and my wife did experience some of that, but not lasting. Personally, though, I have not had any such trouble. But it is important to take the LDN before going to sleep. Not a nap, but real sleep. The LDN needs to work on the brain while the brain is thoroughly asleep. A little difficult if there is sleep disturbances in the beginning, but as the brain gets used to the LDN it should be less of a problem. There are also some conflicting stories about how to take the LDN. Some advocate taking it continuously, but one physician in a discussion group stated it was best for ten days, a stop for three days, and then resume and to continue this pattern. Personally that makes sense to me as I would think that taking the medicine continuously could cause some saturation problems. Therefore I am stopping the LDN for a couple of days in between longer stretches as that physician advised.

Complicating things is that I work night shift and change my sleep pattern on my days off. But since I have a three day weekend every two weeks, stopping the LDN on my weekend off fits very well into the advised pattern of taking LDN. My best advice is to explore the web sites where you can read about other people's experiences, and then make your own decision. One positive factor of LDN as opposed to other medicines for multiple sclerosis is that it is much cheaper. Your prescription plan may or may not cover it, but I have found a prescription center that sells the medicine quite cheaply and will take a prescription from a general physician, not just a neurologist. I happen to be good friends with one of the emergency room doctors at the hospital where I work, and he was happy to call in a prescription for my wife, and once I use up what I got before, he’ll call in for me as we both are trying the LDN now.

The compounding pharmacy we use now is the Prescription Center at 800-203-9066, FAX 608-788-4501. For a three month supply of 90 1.5 mg capsules, the price is $56.93; 90 3 mg capsules $64.35; and for 90 4.5 mg capsules as I take, $82.17. This is one third cheaper than the price charged by the pharmacy I initially ordered from.

My wife, who started LDN later than me, weighs approximately125 lbs. and 3 mg capsules were recommended for her while I weigh close to 200 lbs. and 4.5 mg capsules were recommended for me. My wife did have some problem with the 3 mg capsules, in that her bowel program has her taking oral laxatives every two days, and on her off day her bowels acted up. She got the 1.5 mg capsules, but then decided to continue with the 3 mg capsules and she has had no further problems and has noticed some improvements in her walking when she uses the walker. Her mobility is better than mine, mixing walker and wheelchair at home and a scooter when we go out. As she is more likely to benefit from LDN, I am keeping an eye on her.

We will use up the 1.5 mg capsules by doubling or tripling them until used up and then we will continue with 3 mg for her and 4.5 mg for me. I recommend talking to your family physician about this medicine and seeing if they will prescribe it. If not, contact the prescription center and ask if they can recommend a doctor who will prescribe it on the phone. I work at a hospital and one of the emergency room attending doctors I am friends with prescribed for both of us as a courtesy. Better than the $5.00 per minute I paid for the phone consultation with the neurologist who initially prescribed LDN for me ($140.00!).

Overall, this is a relatively inexpensive alternative therapy with minimal side effects - in fact I have noticed none - and if it keeps my M.S. from progressing I consider it well worth while even if my prescription plan turns it down. There is another therapy I am also going to explore which is being used in England with very good success and after I get more information on it, I'll be writing an article on it and seeing if there is any way of trying it here in America.

Reach Alex by email to comment: abrejcha@netreach.net

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