My RLS update

[Ridgerunner]

I am 33yo male and have had primary RLS since as long as I can remember back to childhood. My RLS is painful with both daytime and nighttime symptoms depending upon what I am doing. I learned about RLS in nursing school and decided to go seek help. About 2 years ago I began on Requip at the advice of my Neurologist (Recommended by this website). I took it for around a year and never did get above 1-2mgs per day. At first it was great, then over time it began to cause some side-effects that made me wonder why I was still taking it. Each time that I went back to my Neuro he wanted me to increase my dose of Requip. I had the hardest time trying to convey to him that I could not tolerate any more increases. I ended up tapering off of Requip on my own and then my RLS was back.

I went to a different MD and they started me on Mirapex which is what I expected as my original Neuro was going to try that next. I only took Mirapex for about a month as I could not tolerate that either. I again tapered off the drug and was left in pain. I did some research and decided to try a low-potency opioid. I used online physician services for about a year. I was prescribed Tylenol #4, 60mg Codeine with 300mg of Tylenol. The Tylenol does nothing for RLS so I was not a big fan of that but the Codeine worked great. I would take one tablet at bedtime or earl evening and half to one if daytime symptoms became bad enough. This would cost me about a dollar per pill and I knew that I had to find an alternative because Tylenol is no good long-term and it was costing me alot of money and afterall, I do have good health insurance.

So, I went back to my original Nero and refreshed his memory about my Requip adventure. Then I told him how I tried Mirapex to no avail. Then I told him how I used the T4's with great success for around a year with no increase in dosage from starting dose or innapropriate addiction type usage. At first he wanted to try a DA again and I flatout told him I would not go back on that crap. So, he was going to start me on plain Oxycodone but I suggested Methadone based on my own research. He said he had other patients on Methadone and that it worked quite well from his experience. So I have been on Methadone for about 3 months and it has been great. I started on and am currently taking 5mgs in the evening or at bedtime and 1/2 tablet as needed which is not very often.

I am so glad to not be taking Tylenol daily as it is hard on the kidneys/liver. If an MD puts you on opiates for long-term management of RLS do not let them put you on something combined with Tylenol. Suggest Methadone, Oxycodone, Morphine, Fentanyl TDM, Dilauded or Codeine. Stay away from Vicodin and Percocets for long-term daily use. If you are just starting treatment for RLS I would let the MDs try what they want to an extent. I would try the DAs and perhaps Neurontin or a Benzo short-term. But try to keep from being a guinea pig when research tells us that the opiates are wonderful for the treatment of RLS and there is very little chance for addiction when used for RLS.

[ksxroads]

Dear Ridge,

So glad to hear that your doctor was willing to work with you. So many find that all most impossible!

I agree that long term affects from Acetaminophen use will be harmful on the liver and kidneys. Yet doctors may be reluctant to prescribe Methadone initially.

So I thought I would post this info again, about a supplement that one might consider taking when using pain relievers with acetaminophen...


Several pain medications used by RLS suffers like Vicodin, Loratab are combined with acetaminophen. Acetaminophen long term use can have adverse affects on the liver.

Recently in the immune support newsletter on fibromyalgia treatments they referred to acetaminophen use and using the supplement N-acetylcysteine...

"However, acetaminophen is potentially hepatotoxic. Counsel patients not to take acetaminophen with alcohol nor when fasting (with a flu) as fasting inactivates the main detox pathway of glucoronidation. If it is necessary to take acetaminophen regularly, oral N-acetylcysteine (Mucomist), a precursor of glutathione, is available in health food stores. NAC via glutathione might protect against acetaminophen liver problems. "

Full article may be found at

http://www.immunesupport.com/library/bu ... fm?ID=6942

Also found this artical on N-acetylcysteine at
http://www.pdrhealth.com/drug_info/nmdr ... 0178.shtml


Hazel