Any Helpful Guidelines for an Augmented DA patient Switching to Methadone?

[Bearpaws]

Hello. I've been prescribed Ropinerole for many years (17) to treat my RLS, and I've developed the usual augmentation (symptoms moved to my shoulder area and my use of the medication has gone up and up) after several years on Ropinerole/Requip. My previous doctor has tried pre-gabalin, gabapentin, neupro patch, and Horizant as adjunct therapies to help alleviate symptoms and reduce my use of Ropinerole, but these meds don't alleviate my RLS, well enough, like the DA did. I haven't been able to go off the Ropinerole and I take 6 mgs. (Extended Release) a day. On a very rare occasion I've had to take up to 10 mgs. within a day. My new sleep medicine doctor from Stanford Medical Center has just recommended the use of Methodone, up to 10 mgs. a day, and going off Ropinerole, cold turkey! I'm very nervous about stopping the DA abruptly and relying on Methodone, alone, to help me sleep and combat the nasty RLS symptoms. Can anyone provide me with some advice on how to best handle this transition? Should I ask my doctor to augment the Methodone with an additional medication? What can I expect with this new regime? Thanks for your help.

[Rustsmith]

I was taking up to 1mg/day of pramipexole during the six months that I was severely augmented. I never tried pregabalin, by my doctor did have me try Horizant (I was taking gabapentin to prevent migraine headaches). 1mg of pramipexole is not as much as 6mg of ropinerole ER, but it was still a heavy dose.

My doctor told me to start with 5mg/day of methadone and then increase to 10 after about a week. She had me cut my pramipexole dose down to 0.25mg/day immediately. I didn't have any problems with that. I felt better with the combination of the lower pramipexole dose and the methadone any my augmentation symptoms disappeared. I increased to 10mg methadone after a week (that is the standard recommendation for RLS), but found that it left me with a mild drugged feeling that I didn't like. I cut back to 5mg and then slowly decreased the pramipexole over the next month of so. I did have a few augmentation symptoms when I stopped the pramipexole and was only taking 5mg methadone, but that was far better than I had been doing prior to the change. Over the years, I first added 0.125mg pramipexole back because I eventually found that 5mg methadone wasn't enough (I was still taking 900mg gabapentin for my headaches and to help me fall asleep). I also found that methadone kept me awake if I took it at bedtime, so I switched and take it at lunchtime since it is good for 24 hrs. After about six years, I finally had to increase the methadone to 7.5mg, but have been doing well on it.

The only problem that methadone has caused me is that after about six months, I became very depressed (very near suicidal). My doctor didn't suspect the methadone and played around with the rest of my meds. I finally discovered (on my own) that all opioids can cause testosterone depression in men (but not women). Once I started hormone replacement therapy, the depression disappeared.

The hormone issue is only one of many medical issues that I have had to "diagnose" for myself and then get my doctor to run the tests required or let me try treating the condition that I discovered. Most of these have nothing to do with RLS, so the message that I will provide is to do your own research, ask questions, don't believe everything you see on the internet, but also don't rely solely upon the guidance of your doctor (even those associated with medical schools). I was an engineering researcher before i retired and saw far, far to many instances of educated professionals who could not think outside of their immediate area of expertise (as in thinking outside of the box).

[Bearpaws]

Steve,
Thanks very much for your quick and considered reply - I appreciate it! It's very helpful to me to know other people's experiences in transitioning from a DA to Methodone. This message board is a great resource for RLS patients and I'm very glad it exists! Thanks again for your help. - "Bearpaws"

[Bearpaws]

As an update to my previous posting from last September, my sleep doctor actually had me go on Suboxone (Buprenorphine-Noloxol) rather than the Methadone, and I'm glad he moved away from his previous recommendation as I also have treated depression and anxiety; I don't want any medication that could make my depression arise again! So far its only been about one month on the Suboxone, but it seems to be working and keeping my RLS symptoms at bay. I pray that this good news will continue for a long time! But I am dealing with many of the side effects of the opioid medication, including a return of anxiety and OIC (opioid-induced constipation). The anxiety has been a big issue for me and I'm taking my usual SSRI (Escitalopram) in an effort to help battle those nasty feelings. Does anyone else out there have experience with the best ways to battle the constipation and anxiety? I'm using OTC products to help "move things along" in my gut and trying to get more fiber in my diet. Has anyone had to try an opioid antagonist like Movantik or Moventig? Or have you found non-medication products to be o.k. with combating constipation. Also, my doctor is having me slowly taper-down on my dose of Suboxone to find the lowest-effective dose against RLS. I would appreciate any advice or letting me know about your side-effect experiences with taking opioid medications. Thanks.

[Polar Bear]

I take Cocodamol and Pregabalin to treat my RLS. Cocodamol is At the bottom of the opioid scale but I am prescribed the max daily dose of 8 x 30/500 per day. Usually I get by on 6, possibly 7. This no longer causes any constipation issue. There was a time when I could not 'go' for up to four days and it was a difficult time. I used Lactulose which is very gentle.
This lasted for maybe two years. I don't don't why the constipation eased but do suspect that drinking a lot more water helped/helps. I no longer need Lactulose.

I've been taking Codeine and then Cocodamol for about 15 years without any obvious side effect..... That I'm aware of.... Other than the constipation which actually was around the time I was switched from plain codeine to the cocodamol.

[Frunobulax]

But I am dealing with many of the side effects of the opioid medication, including a return of anxiety and OIC (opioid-induced constipation). The anxiety has been a big issue for me and I'm taking my usual SSRI (Escitalopram) in an effort to help battle those nasty feelings. Does anyone else out there have experience with the best ways to battle the constipation and anxiety? I'm using OTC products to help "move things along" in my gut and trying to get more fiber in my diet. Has anyone had to try an opioid antagonist like Movantik or Moventig? Or have you found non-medication products to be o.k. with combating constipation.

I'm ultra sensitive to side effects, and constipation is/was a massive problem for me, being on Oxycodone 20-30mg over the years. What works best for me is magnesium citrate, I take a teaspoon every evening dissolved in water, before going to bed. Allows me to "go" the next day without issues. Takes a bit time to get the dosage right, too much and you'll know it the next day, not enough and constipation is back. But I've been doing this for many years now and it's fine. It is sold as a supplement (I get mine from Amazon, pure powder in bulk containers), not as a laxative, but the effect is there.

If I want something more, um, faster acting, then I take magnesium peroxide. (Which I get as non-prescription from a pharmacy, but I'm not sure about the US brand names.) This works for me within 1-6 hours, depending on the dose. It is sold as a designated laxative.

I tried a lot of other things, but nothing was satisfactory, Lactulose worked but was hard to dose and caused flatulence. I also didn't like the taste. Other stuff, especially fiber like flea seeds, chia and whatever is the treatment of the day, did nothing at all for me.

[Bearpaws]

Many thanks to both Polar Bear and Frunobulax for your kind and quick replies; I really appreciate it! I'll try your suggestions and see if I have more luck with them than what I'm currently trying (Miralax). Again, thank you and best wishes to you! -

[Lissa496]

As someone who also has issues due to taking opioids, I also take magnesium, starting at 250 mgs and now up to 500 mgs at night and that seems to help to keep my BM's pretty normal. Good luck Lissa