methadone not working

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2restless
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methadone not working

Postby 2restless » Mon Oct 15, 2018 12:01 am

My husband has severe refractory RLS, like many of you. We've been thru everything. In June we started methadone - he initially needed 10 mg tid, but was able to cut down to 10 mg twice a day within a month. However, now the RLS is back. The pattern at night is 1-2 hours of sleep, awake for 1/2 - 2 hours, back to bed for another hour or two, then awake again. He can get 4-5 cycles of this a night. The restlessness in his legs is not as severe as before we started the Methadone, and generally he does not have it in the day, but of course, the more sleep deprived he gets, the restlessness worsens and comes earlier.

So, what do we do? We are so discouraged. The reading I've done on Methadone stated that most people did not develop tolerance, as it doesn't desensitize the opiate receptors like the morphine derivatives. He will occasionally take a small dose of Mirapex, which we weaned off over 5 months, stopping it in May. He also will smoke marijuana if needed, but that doesn't seem to be helping him get thru the night either. We increased the Methadone to 25 mg; hasn't seemed to make a difference. Has anyone else experienced anything like this?

ViewsAskew
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Re: methadone not working

Postby ViewsAskew » Mon Oct 15, 2018 12:44 am

yeah, I am one who developed tolerance, so I get your frustration. Most of us do not, but a few do.

That said, increasing my dose did help. Not sure what to think about that.

The only thing that has worked for me - long term - is to take about 50/50 methadone and pramipexole for awhile. The length depends on if you've augmented before and how long you were off and how long it took to augment. Initially, I never went more then 5 days. Since I have had three infusions, I now can do this for a couple months.

Then, I go to only methadone for a couple weeks, then taper back down to 50/50. The methadone only SUCKS for many reasons. But, it keeps me from augmenting.

Not saying this is the best way - just A way.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

2restless
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Joined: Sun Jan 28, 2018 3:10 pm

Re: methadone not working

Postby 2restless » Mon Oct 15, 2018 1:37 pm

This sounds like a plan. Let me see if I understand you correctly. You cut your Methadone dose down by half, and then take the pramipexole with it, for about 5 days (which can vary,depending on the person), then stop the pramipexole and go back to Methadone alone again for a time. When you go back to just the Methadone, do you increase the dose again back to your baseline?

Thank you for help- it is so appreciated.

ViewsAskew
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Re: methadone not working

Postby ViewsAskew » Tue Oct 16, 2018 4:22 am

2restless wrote:This sounds like a plan. Let me see if I understand you correctly. You cut your Methadone dose down by half, and then take the pramipexole with it, for about 5 days (which can vary,depending on the person), then stop the pramipexole and go back to Methadone alone again for a time. When you go back to just the Methadone, do you increase the dose again back to your baseline?

Thank you for help- it is so appreciated.


Yep. Of course, no idea if it will work for you...and, when you go back to methadone alone, it takes a good 7-10 days for it to build up (really long half life), so you may be taking your prior dose, but it won't work as well at first. That is the roughest part.

Did you augment? If so, how long did it take and how much pramipexole were you taking? If it took you, say, a year to augment, you could easily take them together for several months, then take, say, a couple weeks off.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

QyX
Posts: 360
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Location: Berlin / Germany

Re: methadone not working

Postby QyX » Tue Oct 16, 2018 9:24 am

The way Methadone is metabolised in the body can be very different depending on eachs person genetics. There is a group of people who seem to be rapid metabolizers of Methadone.

Maybe he is part of that group and from what I learned about opioid replacement therapy in Heroin / opioid addicts there are even ways to test it.

I guess he should talk to his doctor and see if it is possible to increase the dosen even further. If this is not helping he might need a 2nd drug like an antiepileptic like I need since an opioid alone is not enough for me.

You wrote you have been to "everything". What exactly does this mean ... or more specific, which drugs have been used so far?

I take a combination of three opioids (Hydromorphone, Oxycodone and Morphine) instead of a higher dose from one single opioid. In my case this helps to keep the tolerance under control and in that combination opioids are still effective after 6 years of taking them.

badnights
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Re: methadone not working

Postby badnights » Wed Oct 17, 2018 5:04 am

QyX wrote:I take a combination of three opioids (Hydromorphone, Oxycodone and Morphine) instead of a higher dose from one single opioid. In my case this helps to keep the tolerance under control and in that combination opioids are still effective after 6 years of taking them.
How much of each do you take? Do you know if withdrawal might be easier from that combination than from a larger dose of only one opioid?
Beth - Wishing you a restful sleep tonight
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wildflower
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Re: methadone not working

Postby wildflower » Wed Oct 17, 2018 6:00 am

I am sorry your husband is having so much trouble. I hope my experience will hep you gain some insight into your own. I, too, have been on methadone for about 18 months. I started out on 5mg of hydrocodone a couple of years ago and it worked like a charm. I felt normal - for a few months. As that dose increased I switched to oxycodone in order to get away from the acetaminophen. That dose also gradually increased. Eventually my doctor put me on methadone. I have gradually increased my dose. I am now up to as much as 20 mg/day of methadone. My doctor says methadone seems to take a couple of hours to work. I also have 5mg of oxycodone for "rescue" up to 4x/day. In addition I have some Pramipexole, which I try to take in the smallest dose possible because I have augmented in the past.

I oxycodone in the early evening at the first sign of symptoms, then take my regular methadone dose a couple of hours before bed. I take the pramipexole with the methadone because it also takes a couple of hours to work. If I have any symptoms at bedtime or during the night I take more oxycodone, one at a time. It takes about 15 minutes to work. Methadone has a long half life, so it works for a long time. Oxycodone only lasts about 4 hours.

My doctor and I have talked about doing a "drug holiday"in a few months when I have time to take an extended break from my daily routines. It has the potential to be pretty miserable like coming off the dopamine agonists, which I did about five years. The advantage would be that tolerance to opiates decreases after a period of being off of them entirely, for as little as two weeks. The mystery question is how long the decreased tolerance will work. I plan to step down the dose every couple of days and use pramipexole to relieve the RLS a little. I'll check back and let you know how that goes.

In restarting opiates I know it is important to follow the doctors instructions carefully and avoid other sedatives such as alcohol. I don't know at what dose of opiates there is potential for overdose. I am guessing that it is a much higher doses than we take for RLS, but regardless, when taking powerful drugs like opiates I know it is very important to never take it beyond the prescribed dose.

QyX
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Re: methadone not working

Postby QyX » Fri Oct 19, 2018 5:26 pm

badnights wrote:
QyX wrote:I take a combination of three opioids (Hydromorphone, Oxycodone and Morphine) instead of a higher dose from one single opioid. In my case this helps to keep the tolerance under control and in that combination opioids are still effective after 6 years of taking them.
How much of each do you take? Do you know if withdrawal might be easier from that combination than from a larger dose of only one opioid?


8 mg Hydrone, 90 mg Morphine, 30-40 mg Oxycodne which equals about 200 mg Morphine / daily.

Now, withdraw wouldn't make any difference but withdrawing from Methadone is especially nasty.

If you have to withdraw from Methadone, either switch to Oxycodone or Morhpine, then reduce the dose as fast as you can tolerate ... if there are too many problems in the end, I would switch to weaker opioid like Dihydrocodeine and then reduce the dose further.

10 mg of Oxycodne are equal to 20 mg Morphine and 100 mg of Dihydrocodeine or 200 mg of Codeine.

When you have severe RLS, withdrawing from opioids will always be really hard and tricky ... you will most likely a drug to replace the opioids during the withdraw period ... and even when you have a good working substitute like Lyrica or Carbamazepine / Oxcarbazepine, all the symptoms would come back and it may not be possible to have a quality of life that would be acceptable long-term.

I often do minor withdraws, cut my dose by 1/3 ... substitute opioids with Benzodiazepines, stop the Benzodiazepines and then I can go slowly back on my original dose and still have a good effect.

That's what I have been doing in the past 2-3 years do keep my dose stable around 200 mg Morphine equivalent.

badnights
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Re: methadone not working

Postby badnights » Sat Oct 20, 2018 2:08 am

Thanks QyX. I'm on 9 mg of hydromorphone - 10 or 11 some nights - plus small doses of Lyrica, zopiclone and trazodone. Your comments made me wonder if I would have an easier time stopping if I first switched to smaller doses of two opioids, but probably it wouldn't make a difference.

I really wanted to get a couple of iron infusions before I quit, to maximize my chances of getting through it, and I think I know how to get my doctor to agree to the infusions -- I just have to stop taking iron for a while and my ferritin and transferrin saturation will drop below the recommended maximums in the IRLSSG guidelines.

I think there's a good chance for me to be almost normal again if I can boost my CSF iron and stop taking meds that mess with my brain.

But I have no rational basis for this thought, and I only think it when I'm not having symptoms.
Beth - Wishing you a restful sleep tonight
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QyX
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Location: Berlin / Germany

Re: methadone not working

Postby QyX » Mon Oct 22, 2018 11:38 pm

badnights wrote:Thanks QyX. I'm on 9 mg of hydromorphone - 10 or 11 some nights - plus small doses of Lyrica, zopiclone and trazodone. Your comments made me wonder if I would have an easier time stopping if I first switched to smaller doses of two opioids, but probably it wouldn't make a difference.



Switch to Oxycodone or Morphin. I would recommend Morhpine since it is less potent than Oxycodone.

9 mg of Hydromorphone equals between 40 and 70 mg of Morphine, probably 60 mg would work just fine. For Morhpine there are pills available who only have 10 mg (which is about 1,3 mg of Hydromorphone). And when you have to go lower then 10 mg of Morphine to stop the opioids, I am pretty sure there are Morphine drops available in your country too.

We have solutions with Morphine where one drop is about 0,2 mg of Morphine. But I am pretty sure you can just split the 10 mg pills into 5 mg pills and normally 5 mg of Morphine is a small enough dose to just stop, especially when you have the help of Lyrica. In case it is not working, switch from Morphine to simple Codeine which is a super weak opioid but get's metabolised into Morhpine in your body. So when taking Codeine, you are technically still taking Morphine.

Using two opioids simultaneously like I do only makes sense when you don't get enough relief from one opioid alone.

In your case you could just replace Hydromorphone with Oxycodone or Morphine in one day and you wouldn't feel any withdraw at all as long as the dose is high enough.

badnights
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Re: methadone not working

Postby badnights » Wed Oct 24, 2018 6:28 am

Interesting. Food for thought. Thanks.
Beth - Wishing you a restful sleep tonight
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2restless
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Re: methadone not working

Postby 2restless » Sat Nov 10, 2018 5:05 pm

QyX,
My husband has had RLS for 40 years. He is 70 in a few weeks. We have tried sinemet, clonazepam, pergolide, requip, pramipexole, Horizant, gabapentin, Lyrica, tramadol, oxycodone. Additionally we have tried vitamins, magnesium, calcium, gluten free diets, dry needling by physical therapy, reflexology, IV iron infusions, and acupuncture. Currently he is taking 20-25 mg Methadone/day, some days a 0.125 mg dose of pramipexole. He augmented terribly on the D-agonists, so we are wary of doing too much. He smokes marijuana at night, most nights. We stopped Lyrica several weeks ago as we weren't sure it was doing anything, but this week he has gotten no more than 3 hours sleep/night, so I am wondering if he should restart it. His sleep deprivation is going to kill him. Does anyone know, Is Dr Buchfuhrer still in practice? We would take a trip to Stanford if we could see him.

ViewsAskew
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Re: methadone not working

Postby ViewsAskew » Tue Nov 13, 2018 6:57 am

2restless, what is his ferritin? I augmented terribly in about a week on DAs. But, since I have had three infusions and the ferritin is over 300, I can take the DA for much, much longer. I am up to three months without issue. I never could do that!

Dr B still practices - he is my doc. I see him in Downey, by LA, but he is up at Stanford monthly, I am relatively sure. He was talking with Beth at the most recent RLS symposium event about it, I think...or am I making that up, Beth? Well, it was someone, lol. Because he was talking about being late, driving, airports, etc.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: methadone not working

Postby badnights » Sat Nov 24, 2018 10:48 pm

Dr B still practices - he is my doc. I see him in Downey, by LA, but he is up at Stanford monthly, I am relatively sure. He was talking with Beth at the most recent RLS symposium event about it, I think...or am I making that up, Beth? Well, it was someone, lol. Because he was talking about being late, driving, airports, etc.
Yes, it was me! Sorry I didn't see this until now. And as i recall, that is what he said. IT might have been more frequent than monthly??

And 2restless, I agree, his ferritin level is important. Also, the Z-drugs can counteract the alerting effect. Lyrica can, too, but potentially with more side effects. I don;t think I would ever sleep - ever - if I didnt take zopiclone (as long as I'm still staking opioids that is - codeine and hydromorphone have both been wickedly alerting). Moving the opioid earlier is not the whole solution for me, because then it doesn't cover me for the night and symptoms wake me up. Oh - and THC:CBD 1:1 tincture helped me I even went without zopicline when I used it a couple of nights. I have yet to see my doctor about getting it where I live.
Beth - Wishing you a restful sleep tonight
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charles
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Re: methadone not working

Postby charles » Mon Nov 26, 2018 5:50 pm

For the past ten yrs, I have been taking 2 (two) ten (10) MG hydrocodone daily for my refractive RLS. Two yrs ago I added one 5mg methadone in the eve prior to bed. I do have some nights of sleep/awake, sleep/awake, etc, but generally this program works well. I have had full days where I take methadone only, and it's effective 24 hrs straight ! I've taken the methadone only, because I continue to have roadblocks at the pharmacy, who seem to always have a reason why they cannot fill the RX. Seems as though all opiate users are relegated to one unworthy class of humans. Possibly it's only a problem in FLA based on past and current hype. I'm curious to hear what other legitimate opiate users encounter.
Charles
St Pete, FLA


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