Information on long term effects of Methadone.

[MFNS]

Finally saw one of the few Physicians in my State who specialize in RLS. She trained at Mayo Clinic. I am 78 years old and recently detoxed from many years of taking Ropinerole. She prescribed 5 mg Methadone. ....I am now waiting on the results of my bloodwork and have a return appointment. i tried other medications that did not work.... Would appreciate feedback.

[Shellbearclark]

I would be interested to hear your opinion in 30 days.

[Joolsg]

It seems to work brilliantly for most patients but can cause depression for some- in which case the US experts suggest switching to Buprenorphine.

I attach the Massachusetts Opioid study by Dr. Winkleman which shows that Methadone is the most prescribed opioid med for those in the study. The average daily dose of Methadone is 10mg. Let us know how it works- I hope it gives you many peaceful nights.

mcusercontent.com/068feaf31...

[Diz17]

Been taking it for a couple years. Started at 5 mg and all was great for about 9 months but noticed it started not working as well for me so begged my Dr. to go to 10 mg and it was quite a chore but he finally agreed. He won't go any higher for me and now I am noticing that 10 mg isn't enough and I need to go to 15 mg but I know my Dr. won't go for it so no idea what I will do. Minimal side effects except constipation so take something for that.

[MFNS in reply to Diz17]

Thank you for sharing your experience. I'm not sure if I will continue using this drug.I augmented after several years of taking Ropinerole. I have only taken it 3 nights.

I don't want to be addicted with increasing need for higher dosage.

[MFNS in reply to MFNS]

I also started taking magnesium, iron, calcium and iron and noticed a big differenceI only have a problem at night when I want to sleep.

[Hidden]

I was prescribed methadone about 3 years ago. It has been a life changer for me. I am a 67 year old man that has dealt with RLS since I was a teen and it really began in earnest in my mid 20's. In my 60's I began to have it 24/7/365 and because of it, I retired early and shut down my business as I had had two single vehicle accidents two days in a row from sleep deprivation. I was afraid I was going to kill myself with my impaired driving or worse yet, someone else.

I have been on every drug for RLS with only temporary relief that lasted for a few months and with a whole plethora of side-effects ranging from a rage reaction from clonazepam, a compulsive obsession to porn with Neupro patches, feeling like I have been beaten up from another dopamine agent that I cannot remember, and on and on ad nauseam. Oxycodone worked well for me but sometimes interferes with sleep and I will occasionally have itching from it.

My GP wanted me to see a specific sleep medicine doctor she likes. I was put on methadone by this intelligent physician with terrible issues with his practice management (10:00 AM appointments were seen at 4:00 PM, office staff that brought their unruly children because they did not want to pay for a babysitter and then yelled at them all day, office staff could not coordinate care like labs, etc. and the doctor chit-chatting with friends who called or dropped by in person and then doing a unscheduled physical, etc. while I waited for my appointment [the walls were paper thin and you could hear every phone call and other patients/ conversations with the doctor]. After dealing with these issues for three visits, I realized that I could not overlook these issues and left him as a patient. My GP apologized to me. She knew he was "quirky" but was not aware of all these other issues.

Sorry, got a bit off track. He started me on 10 mg of methadone twice a day. Immediately, the daytime RLS went away. I had no side-effects from it. After a month, it returned slightly in the evening sometimes but it was easily managed one or two 5 mg oxycodones on occasion rather than the six to eight I was having to take daily to get any rest. He also diagnosed me as a rapid opiate metabolizer; a condition I did not know existed.

After I left his practice, I went back to my neurologist and told him what had happened. He agreed with the rapid opiate metabolizer diagnosis. He had been doing some RLS reading and agreed to keep me on methadone and up to four 5mg oxycodones for breakthrough RLS in the evening.

I have had no side-effects at all from the methadone. The rapid metabolizer issue is not as much of a problem with methadone as it uses alternate metabolism pathways from most opiates. I do not feel high or impaired in any way. It just works for the most part. I get minor attacks in the evening but I can let them slide or use the oxycodone if necessary.

After 2.5 years, it did start to come back as I was becoming due for the next dose. We upped the dose to 15 mg twice a day. Did not help much. I went to 10 mg 3 times a day (same daily dose but more frequently and this did help immensely.

Personally, I have had great success from methadone but there are a couple of things to consider. I live in Florida USA and our Food and Drug Administration is scrutinizing every opiate prescriptions in depth. My physician keeps meticulous documentation on my condition and comfortable that he can defend his use of it in my case. He has also started to use it on other patients with the same good to excellent results.

I get some "attitude" from pharmacies sometimes trying to get them filled. Also, pharmacies are limited in the amounts of opiates they can order in a month. I guess patients' needs do not matter to the government bean counters. My neurologist has had situations where he has had cancer patients that were denied narcotics for their pain. The government's claim that it will not interfere with legitimate use was like Marxism - "it works in theory but not in practice."

It will show up on a drug test for me, but because of my rapid metabolism, oxycodone does not show up after a day or two. Methadone has a stigma that goes with its use and that may be an issue with employers.

The other thing I found out was that in some states in the USA, having methadone in a drug test is legal evidence of impaired driving. In other words, having methadone in your blood is incontrovertible proof that you were driving impaired. You might want to check your local jurisdiction to see if this is the case where you are. I keep a current list in the car and my husband has to do all the driving in those states when we are on vacation.

All that taken into consideration, methadone has been a life-changing treatment for my RLS. I feel like I have my life back after all these years.

For what it is worth . . .

Jerold in Citrus Park, FL USA

[MFNS in reply to Hidden]

I can't begin to express my gratitude .....our stories similar. I also progressed to the point where I could not sit down for more than a few minutes; and tried everything. I just got angry and stopped taking Ropinerole .....in ER twice, thoughts of suicide, etc.... After 12 days as recommenced by the RLS Foundation, I asked my PCP to prescribe Pregablin and it caused double vision. I then begged for a sleeping pill ) which didn't work A friend gave me a few Vicodin. ( which did) I began taking Iron tablets, Magnesium, B Vitamins and Calcium which alleviated my daytime symptoms. I will continues to take Methadone. This forum and the Foundation have saved my life and sanity. Only someone who has it understands the trauma, lifetime of embarrassment, and misery caused by this condition.

[Ravnkrest]

Can you explain "detox"? - I didn't know that was an issue with ropinirole.

[Hidden]

Thank you for the nice note back. I appreciate it. I hope you are able to find the relief you seek. It is a heinous disease I would not wish on my worst enemy,

[Graceman]

Been on 10mg Methadone for RLS for years. Wonder drug for me. youtu.be/iCNI_UCj7SI(Not working as expected?)

[Graceman]

Methadone 10 mg for years. Wonder drug for me. Google “Dr Early at John’s Hopkins methadone” and watch his video.