logo
   Web Issue 3147 May 14 2008   
spacer
MS hope from heroin addiction drug
HELEN PUTTICK, Health CorrespondentJune 25 2007

A Scottish doctor is raising money to fund his own drug trial, testing a treatment for heroin addicts on multiple sclerosis patients.

The pill, naltrexone, is available free on the NHS to substance abusers. It blocks the pleasurable effects of opioids and helps the battle against cravings.

However, growing numbers of MS sufferers report that, in low doses, the same medication relieves a number of their symptoms.

Many are paying to buy the treatment privately because it has not been licensed for use in small quantities against MS. While GPs will prescribe 50mg of the drug to heroin addicts, many are unwilling to prescribe 3 or 4mg to MS patients.

Now Glasgow GP Dr Tom Gilhooly, along with consultant neurologist from Tayside Dr Jonathan O'Riordan, have unveiled plans to conduct their own research on low-dose naltrexone (LDN).

It is hoped if they can provide good evidence the drug works in MS cases, that will lead to patients receiving the treatment on the NHS.

The LDN Research Trust, which was set up in England, has raised £9500 through charitable donations from patients to help pay for a trial and plans to support the Scottish project.

Dr Gilhooly also undertook a 28-mile sponsored mountain-bike ride yesterday to raise extra money for the charity. He said £50,000 was needed to fund the trial and he intended to apply to Scotland's Chief Scientist Office for further assistance.

Dr Gilhooly said: "I have seen with my own eyes in my own practice over the last three years the significant improvements in people who really do not have much in the way of options.

"Many of these patients have primary or secondary MS. I passionately feel that everyone with MS at least deserves a chance to try this. It does not work for everyone but in some people it works so well. It suffers because it is not a profitable drug."

He said the research would meet the required standards as a randomised, double-blind, placebo-controlled trial. The intention is to recruit 120 patients from Glasgow and Tayside and record improvements in a symptom of MS which can be measured - frequency of urination.

Many of these patients have primary or secondary MS. I passionately feel that everyone with MS at least deserves a chance to try this

Linda Elsegood, who set up the research trust, said it would be a fantastic day when the trial began.

She said: "Doctors cannot open a book where it says in a low dose, naltrexone can be used for MS'. They have not got time to find out for themselves if it is going to make the person ill.

"If they are not confident about giving it, they say no. We hope the trial would change that situation.

"I think if you get some-thing in writing, if we can get it in a medical journal, there is that security of it saying in black and white it has been trialled, it is safe, and doctors will be more willing to prescribe it."

Dr Lee Dunster, head of research and information for the MS Society, said they wanted to see innovative, safe and effective therapies on the market. "The situation with LDN is there is a lot of anecdotal information out there and, clearly, we need to do the trials.

"The society has last year and this year received applications for funding LDN trials but when they are looked at the applications that have come in so far have fallen way below the standards in terms of numbers and methods used.

"There was an application which has come from Scotland, there was feedback given back to that group that submitted that. There were some key things that needed to be looked at."

Dr O'Riordan, director of the Tayside MS Research Unit, said it was difficult to set up trials and there were strict guidelines governing methods.

He also warned it was difficult to judge an MS treatment on the basis of anecdotes because patients naturally experienced flare-ups and periods of improvement.

However, he continued: "There does appear to be enough anecdotal evidence to suggest a clinical trial of some sort should be performed. If data is not obtained, we are left with the status quo. We do not know whether it works or not. People who benefit might have benefited anyway because they might have been in a good period. But if it works, then we are withholding it from patients."


Patient hails the 'return of freedom'


LORNA McDevitt notices the difference as soon as she gets up in the morning. The 50-year-old, who has suffered multiple sclerosis for more than a decade, said after waking she used to stretch her legs and they would jerk under the covers.

Then she would climb out of bed, sit for a few minutes, before walking stiffly to the bathroom. Taking a shower, she said, was like 10 rounds in a boxing ring and after drying she would have to lie down again.

"It's not like that now. It's not been like that for four years," she added.

In 2003, she began taking low dose naltrexone, a treatment used in larger quantities to treat heroin addicts, after reading about it on the internet. She learned that a New York doctor had experimented with the drug on patients, including MS sufferers.

The first difference Mrs McDevitt noticed was the numbness in her back reduced, then the stiffness and fatigue. It began to give her back some of the freedom which had been stolen by her illness.

Four years on, she said the treatment was still giving her a better quality of life. While she experiences some tougher days, she believes the drug is keeping symptoms at bay.

It costs her £25 a month to obtain the drug on a private prescription through her GP. She said recognition of the treatment's potential is growing in other countries and she believes it will be available on the NHS to MS patients in the future.

"It is definitely going to happen," she said. "I feel very confident about that."


© All rights reserved. Reproduction in whole or in part without permission is prohibited.


Posted by: locutus, Airdrie on 10:08am Mon 25 Jun 07
This is good news. I tried LDN a couple of years ago and did not notice a great improvement in my MS symptoms, however I know many other people with MS who have found it has helped quite considerably/
When you compare the cost of this drug with the cost of the injectable treatements (interferons), then it really is a no-brainer that there should be a full clinical trial.
In Scotland there is a higher incidence of MS than anywhere else in the world.
Posted by: Fiona Bradbury, East London on 2:24pm Mon 25 Jun 07
I have been on LDN since March 06 and my husband is also taking, we are both patients of Bob Lawrence. I have had ms since 2000, I have tried beta 1b and also avonex, avonex made my ms so much worse and felt rough for several days after injecting and on both beta drugs I was still relapsing several times a year. Neither of us have sufferred a relapse since being on LDN. I really do think the NHS/ms society should contriute towards Dr Gilhooly's funding. When will they start to wake up that LDM really does work!
Posted by: David Taylor, Poole on 5:34pm Mon 25 Jun 07
My wife has been on LDN since 2004. How unfortunate that we were not told about it when it was invented one year before my wife was diagnosed in 1986. What trial is that could give more reliable information on safety or effectiveness than a proper random study of the existing data going back more than twenty years.
Posted by: Jacqueline Foote, Ontario, Canada on 8:01pm Mon 25 Jun 07
I have progressive MS (10 years diagnosed) and started on LDN 3 days ago and I already see an improvement! It was almost impossible to find a pharmacist who had it but was finally successfull in getting it! Everyone with MS should have an opportunity to try this drug. No trials are being done in Canada but hopefully a trial in the UK will show good results to push Canada to have a trial here!
Posted by: Martin, Shropshire on 1:54pm Tue 26 Jun 07
I have been taking LDN for my MS since September 2006. What a difference. Why is the media not shouting this from the roof-tops? Why is it not headline news? Many more could benefit TODAY!
Posted by: Dr. Dudley Delany, Virginia Beach, VA, USA on 3:42pm Tue 26 Jun 07
A much-anticipated clinical trial of Low Dose Naltrexone (LDN) for MS began in March of 2007 at the University of California's San Francisco MS Research Center. It is a 17-week, double-blind, crossover study involving 80 patients. Because Naltrexone is an inexpensive generic drug, there has been little commercial interest in sponsoring research. That is to say, the ones to benefit most from such research are MS sufferers themselves. Consequently, MS patients who believed they were helped by LDN banded together to fund the study. In addition, there is presently a multi-institutional trial of LDN for MS being conducted by Dr. Maira Gironi in Italy. It began in December of 2006 and is scheduled to end about the same time as the California study. Finally, there was a clinical trial in Germany of LDN for MS from October of 2004 to April of 2005 involving 60 patients.
Posted by: Richard Davis, Vienna on 7:26pm Tue 26 Jun 07
Why are doctors sponsoring this themselves, what about lottery money as they seem to pay this out for both willing & hair brained causes. This is the 1st I have heard of this & will be approaching my doctors in Austria about prescribing it.
I applaud Dr Delany's comments about the only people who benefit from this are the patients. The pharmaceutical companies are only interested in profits.
Lets all band together and push for this.
Posted by: R, Israel on 10:40am Wed 27 Jun 07
I use LDN for 2 months now. I felt a great improvement after 1 week. I feel like a new person. I got a second chance in life. I'm so glad I found out about the drug. I'm sorry I didn't know about it earlier.
I feel that if so many people are reporting on their improvements, it can't be just a simple 'relapse'. Someone has to look into it and start reseraching.
Posted by: Aletha, California on 7:37am Thu 28 Jun 07
My husband started LDN over 2.5 years ago. The first day he lost his fatigue. Within the 1st week he no longer had bladder frequency. After 2 months he was back to 2 sports a day. In the past 2.5 years he has not shown any progression of MS symptoms or new activity on his MRI's. Infact his one lesion no longer inhances on his MRI's. LDN was the best choice we could have made. He got his life back.
Posted by: Dunc, Erskine on 1:18am Sat 30 Jun 07
Hi all, I buy my ldn from website recommended on the LDN web page 39.00 pounds for about 11 months
supply and make up my own.Like hundreds of other MS sufferers...
I was charged 13 pounds i Glasgow for a months supply.
As they say it pays to shop around.
Best Wishes Dunc
Posted by: christine on 9:13pm Sat 7 Jul 07
been on ldn for a year now. energy levels, mood, numbness, balance, memory and concentration all improved almost immediately. haven't had ms hug or neuralgia since. other symptoms improved more gradually. no horrible side effects either. i know that no drug will help everyone with ms, but i feel really sad that so many people are being denied the chance to try a drug which offers the possibility to delay / stop progression, and to improve symptoms and quality of life.
Posted by: Roelof Osinga, Leeuwarden, NL on 5:55pm Wed 25 Jul 07
Well, I got diagnosed in 2000 and entered the usual rigmarole which I quit ASAP. The I went on a search mission and found and tried several before I finally found LDN.

At first I got the 3 mg Nalorex, later the 4.5 mg due to the english change over. Some time ago.

Since then I used that.

Haven't had relapses since and a decreasing ampunt of apasms, but I still can't walk! Rats.

Being kinda enthousiastic about LDN, I have been promoting it for many, many years.

Unfortunately LDN came too late for a very good friend of mine, with an aggressive form of MS.

Finally he had his GP up his dose of morphine.

He was a very good and bright man. Sorely missed.

Roelof Osinga
Posted by: gemhk, Hong Kong on 2:01am Wed 1 Aug 07
What about all of us with cancer? I have been told no further treatment and no hope from the oncologist.... Now been on LDN for 6 months and doing great. Cancer is the next hurdle for LDN to get across to the masses dying from cancer.

D
Posted by: Vicki Finlayson on 3:59pm Wed 1 Aug 07
I have been on LDN for a year and 9 months now and haven't had a flair up since taking the LDN. Prior to LDN I was in ER every other month and on heavy doses of vicodine, morphine and a list of other drugs to fill an entire page. I was also on an antidepressant for 10 years. I am very happy to say I no longer need it!!!!! Before life was difficult but because of this drug I have a whole new outlook on life and have also convinced my doctors. It's a shame this drug isn't getting the attention it needs by more doctors. I have become a huge advocate for LDN here in California and have been stirring up the pot with allot of doctors!!!!!!
Posted by: Destiny mARQUEZ, Oregon, USA on 12:42am Thu 2 Aug 07
My dad is 78 and has had Parkinson's for 17 years. He started using LDN October 2004 with immediate results. He has had quite a bit of symptom relief including muscle tension. We have been able to reduce his meds by over 60% and he does not seem to be progressing. We wish we had found it many years ago!
Posted by: kay isbell, cornwall UK on 12:51pm Thu 2 Aug 07
I have been on LDN 4.5mg for three years now and I am back on my feet with much less pain. Prior to that I was sent to a hospice in so much pain that they didn't think I would live. I was on morphine and had three injections of steroid cortizone in my spine which was a wonderful relief. Since I started LDN I have dropped most of the drugs that were keeping me steady and although I have a balance problem, I can walk quite a long way with many other symptoms well under contrl.
Posted by: David Gluck, MD, New York City on 2:42pm Thu 2 Aug 07
The human applications of low dose naltrexone were discovered by Bernard Bihari, MD of New York City beginning in 1986. At that time he demonstrated its efficacy in dealing with HIV infections in a brief clinical trial. Since that time, LDN has shown that because it strengthens the immune system, it has beneficial effects in ALL autoimmune diseases (such as MS, Crohn's, & rheumatoid arthritis), most cancer problems, and even neurodegenerative diseases like Parkinson's disease and motor neuron diseases (such as ALS). Many of the details can be found at www.ldninfo.org.

The only tragedy is that our system of gaining approval for new medications rests heavily on the financial interests of big pharmaceutical companies which ordinarily supply the funds to run the needed clinical trials -- in the case of naltrexone, which is off-patent and a generic, they seem to have calculated that LDN, a cheap and effective medication, would challenge their profits from existing ineffective, expensive drugs and there fore they have refused to show any interest! What a loss for millions of people....
Posted by: Audrey Shannon, Buckinghamshire UK on 8:31pm Thu 2 Aug 07
I am so grateful to Linda for helping me use this amazing drug. I have had MS since 12yrs old. I am now 38yrs and I was rapidly going downhill until I began LDN. The change was almost immediate. I have been taking it for five months with practically no symptoms at all. I am almost symptom free again. I never did do the other drugs available just this one and I'm so glad I waited. Thankyou so much. For me it really has been a miracle cure! LDN has given me back my life.
Posted by: Brian Lonsdale, Dorset UK on 9:13am Fri 3 Aug 07
My wife has had MS for 44 years - 3 years ago we heard about LDN - she was losing the use of her right hand (her last limb) and it stopped the constant pain and dramatically slowed the progression of MS immediately - if we had known about LDN when Dr Bihari first proposed it, I believe my wife would not be in a wheelchair.

When you can only hold a mug of tea in your hand and need everything else done for you, anecdotal evidence is good enough, and was for us, to use LDN - after all there are tens of thousands of people using LDN to good effect NOW !!
Posted by: Stephen Dickson MRPharmS, Glasgow Dickson Chemist on 2:00pm Fri 3 Aug 07
I am one of the pharmacists working in Glasgow making and supplying LDN to over 300 people all over the country. We have noticed vast improvements in some people - and not very much in others. However, for this patient group where there is often nothing else left to try, it does appear to give some relief. We are very supportive of the trial- and hope that it will quickly confirm what we already know.
If you need to get LDN, you can all us for help, we can often put you in touch with a prescribing doctor in your area. 0141 647 802.

We also supply medications like Sativex and Aimspro - but the best results we have seen are with LDN.

We would also strongly advise people not to buy naltrexone powder from the internet and/or attempt to make it yourself, we have come across people doing this and potentially causing themselves or others harm. It should always be obtained by getting a prescription and be used under the care of a doctor. There are also various drug interactions to be aware of!

It is highly illegal to buy naltrexone from the net and sell/give it someone else. This is a prescription only medicine and needs to be treated as such!
Posted by: Iain Whyte, Aberdeen, UK on 4:09pm Fri 3 Aug 07
quote

I have progressive MS. Still walk with a limp, drive, work. Energy levels OK in the main. Excercise as much as I can (bike) but pain in legs/hip is severe and have to stretch legs constantly to avoid cramp.
I've been on LDN for over 1 year with NO noticable benefit. I took 3ml/night (3mg) but had to stop recently when I developed Leaking Gut Syndrome resulting in an aversion to ANY dosage, even sugar-free liquid. About to try 2ml/night again.
I read with envy stories of success here.
I'll persevere but don't hold out much hope.
Am I taking it wrong?
What am I doing wrong?
Am I taking the wrong stuff?
I take it at 10PM before I go to bed.

Should I try Sativex or Aimspro?
quote
Posted by: iain whyte, 222-7-1 on 4:17pm Fri 3 Aug 07
Jacqueline Foote wrote:
I have progressive MS (10 years diagnosed) and started on LDN 3 days ago and I already see an improvement! It was almost impossible to find a pharmacist who had it but was finally successfull in getting it! Everyone with MS should have an opportunity to try this drug. No trials are being done in Canada but hopefully a trial in the UK will show good results to push Canada to have a trial here!
quote

I have progressive MS. Still walk with a limp, drive, work. Energy levels OK in the main. Excercise as much as I can (bike) but pain in legs/hip is severe and have to stretch legs constantly to avoid cramp.
I've been on LDN for over 1 year with NO noticable benefit. I took 3ml/night (3mg) but had to stop recently when I developed Leaking Gut Syndrome resulting in an aversion to ANY dosage, even sugar-free liquid. About to try 2ml/night again.
I read with envy stories of success here.
I'll persevere but don't hold out much hope.
Am I taking it wrong?
What am I doing wrong?
Am I taking the wrong stuff?
I take it at 10PM before I go to bed.

Should I try Sativex or Aimspro?
quote
Posted by: iain whyte, Aberdeen, UK on 4:23pm Fri 3 Aug 07
R wrote:
I use LDN for 2 months now. I felt a great improvement after 1 week. I feel like a new person. I got a second chance in life. I'm so glad I found out about the drug. I'm sorry I didn't know about it earlier. I feel that if so many people are reporting on their improvements, it can't be just a simple 'relapse'. Someone has to look into it and start reseraching.
quote

I have progressive MS. Still walk with a limp, drive, work. Energy levels OK in the main. Excercise as much as I can (bike) but pain in legs/hip is severe and have to stretch legs constantly to avoid cramp.
I've been on LDN for over 1 year with NO noticable benefit. I took 3ml/night (3mg) but had to stop recently when I developed Leaking Gut Syndrome resulting in an aversion to ANY dosage, even sugar-free liquid. About to try 2ml/night again.
I read with envy stories of success here.
I'll persevere but don't hold out much hope.
Am I taking it wrong?
What am I doing wrong?
Am I taking the wrong stuff?
I take it at 10PM before I go to bed.

Should I try Sativex or Aimspro?
By the way, I concur fully with the comments regarding the self-serving drug companies who don't see any profit in funding this. SHAME on them
quote
Posted by: adrienne howard, Kettering Northants on 7:55pm Sat 4 Aug 07
I have secondary progressive MS (30 yrs since dagnosis when I was 27yrs old) and have been tking LDN for around 3 years, unable to stand but can report it has stopped leg spasms when seated in wheechair, has helped with fatigue, and seems to have slowed down the progresson of MS' Wish it had been available when I was much younger! Unfortunately does not seem to work for everybody.
Posted by: ap, BKK Thailand on 12:43pm Wed 26 Sep 07
I have RR-MS 4 yrs. ago(now i 32 yrs. old). I have only Tegretol and Baclofen. I would like to try LDN. Who can advice me about WEB-SITE ,that' can buy it online(i have money not much to pay). And How to use LDN ? aphinun@gmail.com . Thank you so much.
Posted by: Gail on 10:09pm Tue 22 Jan 08
Dear All,
I'm a medical student doing a study on MS treatment with LDN and AIMSPRO. Does anyone know where I can get information on the trials already completed. BY the sounds of it that should be:
- a clinical trial in germany on 60 people from oct 04-april 05
- a trial at the university of california's San Fran MS research centre started march 07 with 80 patients
- Dr. M Gironi's trial in Italy in 2007

Also, if anyone has been involved in trials of LDN or AIMSPRO I would be delighted to hear from you. Hopefully my studies will help, at least in a small way, to make more people aware of the potential of these drugs.

Many Thanks
Gail Osprey (gail.osprey@yahoo.c
o.uk)
Add your comment
Please note: to publish your comment you must be registered on this site. If you are already registered, please enter your details below.
Email:
Password:
spacer
 IN YOUR AREA
 
Herald Appointments - Every Friday
Travel Shop
Airport Parking
Travel Insurance
Copyright © 2008 Newsquest (Herald & Times) Limited. All Rights Reserved   
Sitemap :: Circulation :: Syndication :: Advertising :: About Us :: Terms of Use