Methodone

[mackmann]

I’ve augmented on Ropinerol and Gabapentin so am considering methodone. My questions concern side defects and how
they’ve been handled by fellow RLS uffers.

Any fatigue and, if so, any thing that can help?
Insomnia. Take the med earlier in the day? Other suggestions. Will this be a problem ?
Constipation? Solution?
And itchiness - typically an issue and, if so, any resolution.
THANKS! My RLS of ten years duration is quite severe so I’ve got to make a move. My neurologist will prescribe methodone.

Mac McCulloch

[ViewsAskew]

Hi Mac -

Fatigue - only if I take too large of a dose. Recommendation is to take enough to keep symptoms at around 90% covered. That helps a lot.

Insomnia - not insomnia, but alerting. It makes you awake when you want to be asleep. Taking it earlier often does help, as does taking it with something that would put you to sleep.

Constipation - I imagine all of us have that. Fiber, water, and walking. I take a fiber supplement and eat a lot of soluble and insoluble fiber. Works great.

Itchiness - this is really the only one that is a bit harder to resolve. It doesn't happen to al of us. I increase my dose VERY slowly as that is what seems to create the issue (except when I started - it was pretty bad in the beginning). I take a safe antihistamine when it does happen. I also bought a skin brush - it really does a great job of causing the itchiness to subside when it bothers me in the middle of the night.

Do consider that while most of us do not have tolerance, a few of us do. Keep your dose low if you can. And, if you find your dose creeping higher, take breaks and reduce it - not fun, really, but it does work.

[debbluebird]

I had nausea for a couple of months and then it just went away. After a few years I had to take it earlier due to alertness. I ended up taking 5 mg in the am and 5 mg in the pm. I had started out taking one around 5 pm, the other around 9 pm. For constipation, I took senna with a stool softener. Start out taking one once a day. If that's too much take it every other day. If not enough, add one. At one point I was taking 6 a day, spread out throughout the day.
I no longer take it because my Doctor won't prescrib it. I had moved to a new state.
Good luck

[mackmann]

Ann,
Thanks so much for your informative reply. I really appreciate your input.

Mac

[mackmann]

Ann,

Thanks so much for your input; helps a lot.

Mac

[SteveSensei]

I was okay for the first month, then suddenly I got hit by a week of severe anxiety and claustrophobia. There were 2 mornings this past winter where I had to eat breakfast outside on the patio, with weather in the 40's, because I could not stand to be in the house. My doctor switched me to 5 mg Oxycodone and that took care of all the anxiety and 98% of the claustrophobia. The other difference was that on Methadone, I could nap in the daytime without the legs and arms going whacko, since it stays in the body for so long, but on the Oxy, I can't.

[Rustsmith]

I have 3 suggestions based upon personal experience with methadone. And one other that I haven't be able to try yet.
1. Have your doctor check your testosterone levels (both total and free). Opioids can cause Low T in men and this can lead to mental issues, such as severe anxiety and depression. Claustrophobia might also be there too (along with low libido and weight gain).
2. If you live in a state where you have access to CBD, that worked wonders for anxiety. A couple of drops beneath my tongue and the anxiety was gone in minutes.
3. You might ask to try tramadol ER. It is more expensive than methadone and comes with its own set of side effects (as do all opioids), but it is also a 1/day med. Tramadol also has the benefit of being Sch IV, which means you can even get a 90-day supply.
4. Buprenorphine is also a 1/day opioid that might be worth trying. I have heard good things about it with respect to RLS but haven't been able to try it yet.

[mackmann]

Just saw this Steve; thanks for the info.

[dallen54]

I'm trying to decide if I should try methadone so this looks like a good place to start for some helpful information. I augmented within a month or two on every RLS med available. My RLS hits at any time day or night and often also involves my arms and even my torso - like my entire body is affected and it's a horrible feeling.

I'm very fortunate that my doctor is always willing to review any info I bring him and to prescribe anything recommended that might work. When I took info regarding the iron issues he had blood work done and the saturation and ferritin were both at the very bottom of "normal" range (saturation was 16 and ferritin was 19). His nurse who receives lab results called to tell me all was "normal". I explained about the iron levels and RLS and that based on the results and all I've read I would need to bring those numbers up. She said it would be fine for me to take the 325mg daily iron supplement, which I'm now doing, but I plan to discuss with my PCP on my next visit.

In the meantime I'm taking hydrocodone 10/325. I was only taking it at night so I could at least get some sleep but then during the day at work the RLS starts back up again and I'm having to stand a lot of the time at work, so my doctor prescribed 2/day and said to try 1/2 in the morning and 1/2 mid day and continue with 1 at bedtime and if that seemed to work for me he'd see if insurance would approve the extended release form. I've been afraid to take any during the day because even just taking one at bedtime I find myself fighting to stay awake at times during the day, and I suspect the long lasting would do the same.

I understand methadone stays in your system longer and only requires one/day. I'm wondering if methadone has less of that side effect of falling asleep during the day, or would oxycodone or some other med be something to try? I realize any medication will affect everyone differently but would love to hear from others who have had similar experiences and have maybe found some relief without the accompanying sleepiness (except at night of course because I've suffered from both depression and insomnia my entire life and do need to try and sleep at night).

I look forward to hearing anyone's thoughts or suggestions.

Thank you,
Donna

[Rustsmith]

Donna, methadone effects some of us differently. For me, methadone causes what we often refer to as alerting. With alerting, you are not only awake, but wide awake and mentally alert with no chance of falling asleep. As a result, I take my dose at lunchtime so that the alerting has worn off by bedtime. However, for others, methadone causes drowsiness just like oxy. How long that lasts depends upon the individual but often that has worn off by morning even though a single dose of methadone stays in your system for over 24 hrs.

So, we all end up being an experiment of one. You just have to try it to see how it works for you.

[dallen54]

Thanks for your helpful reply, Steve. I see my doctor this week and wanted some information before going so I can try and figure out my next step and know what to talk to him about. I do understand all meds affect everyone differently. Since I know with hydrocodone I'm often struggling all day to stay awake even though I've taken it between 9 and 10 the night before, I'm thinking methadone may be worth a try. My doctor was able to get insurance to approve the hydrocodone without much trouble so I'm hoping to have the same success with methodone. You are so right - we are all an experiment of one. I've been through this with anti-depressants, trying to hit on the one that will work without too many side effects. I'm hoping there's an answer to this one as well. Thank you!

[ViewsAskew]

What was the outcome, dallen54?

[badnights]

When I took info regarding the iron issues he had blood work done and the saturation and ferritin were both at the very bottom of "normal" range (saturation was 16 and ferritin was 19). His nurse who receives lab results called to tell me all was "normal". I explained about the iron levels and RLS and that based on the results and all I've read I would need to bring those numbers up. She said it would be fine for me to take the 325mg daily iron supplement, which I'm now doing, but I plan to discuss with my PCP on my next visit.

You might want to try taking two x 325 mg at night, with vitamin C. You might get better/faster results than taking just one. How long have you been taking the one iron pill? When your ferritin goes up, you should notice an improvement in your symptoms.

If you're fighting to stay awake, that may or may not be an effect of the hydrocodone. It may be because you don't get good-quality sleep.

You say you're taking hydrocodone10/325 which sounds like a hydrocodone/acetominophen mix. The acetominophen doesn't treat the WED/RLS and still has to be processed by your liver/kidney (I forget which) so long-term a medication containing only the opioid is a better choice. You could try methadone if your doctor approves. Note that there are other opioids such as hydromorph contin (long-acting hydromorphone) and levorphanol. There is also Tramadol, not exactly an opioid but works like one for WED/RLS.

[dallen54]

So sorry for the late response. I just got back on here today. Thank you so much for this helpful info. I discussed the extended release versions and he prescribed the extended release oxycodone - XTAMPZA ER 13.5 MG Capsule once a day. I take it in the evening so it will help me sleep. The first 3 days it was wonderful! Not one episode of rls. Then the 4th day I had it a little during the day at work, the next day at work and in the evening and it stayed that way for awhile. Two weeks after starting it had a really bad when I took an hour drive and it was horrible the entire time. The paper that came with that med said it's a 12 hour med.

My doctor is willing to prescribe methadone. He's been hesitant only due to the stigma attached and his concern for how others might view me if they find out I'm taking it. But from what I've read here and considering my recent results it may be time to try that. So far we've been very fortunate in that I have been able to get insurance to cover and CVS to fill the orders.

Fortunately my doctor is open to trying whatever might work and he also seems to be very knowledgeable on the various opioids and how they work, so we can have an informed discussion as to pros and cons with each.

At that same visit I talked to him abut the ferritin and since everything I've read says it can take up to 3 months we'll recheck that 3 months after I started, which is about the end of November. If the numbers are still too low he will look into the options for getting it into my system quicker. I'm really hoping the iron will help at least some.

thanks again for your input!
Donna

You mentioned good-quality sleep and that's always been an issue for me. I probably average 3-5 hours sleep a night, and even with that I'm waking up at least once.

[badnights]

You mentioned good-quality sleep and that's always been an issue for me. I probably average 3-5 hours sleep a night, and even with that I'm waking up at least once.

One problem most of us have is that we no longer know what normal is. You would probably feel like you'd had a really good sleep if you slept an entire 6 hours and only woke up twice, but a normal person would call that a terrible sleep. Sigh.