My husband has been on Methadone (10MG) currently and Gabapentin (1200MG) daily, for approximately 2 years now.. Prior to this ( and I may have mentioned in a previous post ) at the time we didn't know about anything about augmentation. He had been on Pramipaxole for a very long time, at a high dosage. He figured out on his own that it just wasn't working and essentially started to wean himself off of it (with no assistance). By the time he was at his wits end, we finally got in to see a neurologist after nearly a year wait and after trying a few different things, he was placed on Methadone and Gabapentin. We live in Canada , and there appear to be very few people at least coming forward or acknowledged with this situation. The neurologist had never prescribed this for RLS before, he was one of the first. At first it did help, certainly the augmentation stage left great damage, and the dosages have gradually ticked up on both as they seem to work for awhile and then they plateau or become less effective. He has also tried different dosage schedules for the Methadone (and Gaba) as he seems to suffer from Alerting on the methadone so we we switched to some of the dose taken earlier in the day, but again over time that seems to be ineffective. Our neurologist has agreed to now try Buprenorphine - I printed off and showed him articles that you have posted in the past indicating the positive results. Unfortunately, we are not as educated on what the process is to get off the Methadone and Gaba prior or during the transition to Buprenorphine. We went to pick up the prescription and it was a patch - which from your past comments appears to be the least effective method of utilizing as well? We didn't pick it up but plan to contact the neurologist again to switch to either tablets or sublingual.
So what we are seeking is recommendations for the delivery system, and also guidance in how to switch over. The pharmacist was unwilling to comment on this, and the neurologist had suggested cutting the methadone in half each day , no comments on the Gaba reduction. We also received a Naloxone kit for overdose risk (I assume this is common).
Any help you can provide is appreciated, you have literally got us to this point, without this site and information we cant imagine where we would be right now..
Thank you!
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Hi Gosak, can you share what other non-RLS medications your husband is on? Especially things like anti-depressants, calcium channel blockers and PPIs. Also, please think about having your husband try 56mg of ferrous bisglycinate on an empty stomach about two hours before bed, rather than the extended release iron. One of the best things your husband can do is eat nothing after the dinner hour. The ferrous bisglycinate should provide him with a good amount of relief, about 1.5 hours after taking it, if he’s an immediate responder, as many of us on here are. See below:
Last but not least, magnesium glycinate, taken during the day - day in day out - month after month, may help to up-regulate your husband’s down-regulated dopamine receptors. MANY people on here swear by magnesium.
Thank you for your response, I have replied primarily to Sue and Jools, as they are responding to my direct questions about Buprenorphine. I appreciate your reply.
My pleasure! But it’s important for sue and Jools to know what non-RLS medications he is on. We on here like to know that because certain medications will make RLS symptoms much worse than they have to be and sometimes we can recommend alternatives that are better in terms of RLS. Or, in the case of PPIs and statins, sometimes all that is needed is to switch them to mornings. Muchas suerte.
Happy to help others as it has oftenhelped us.. the only other drugs he takes are Candesartan for High Blood Pressure (many years now) and Lansoprazole for Reflux (probably 20+ years on that drug) No other vitamins or anything else, his vitamin levels and iron are all good in fact his potassium and B levels are on the high side. He was told not to take anything in addition. He generally takes his Reflux med in the middle of the night when he is up so he can eat in the morning right away.
Middle of the night may actually be ok? It seems most cardiologists these days recommend Metoprolol for high BP. It has a shorter half life than Candesartan. Like myself, many people find it does not bother their RLS. Not sure about Candesartan so looked it up on here and that seems fine as well.
Yes, I understood that. Aren’t the doctors curious why your husband’s levels of ferritin, potassium and the Bs are high? I was. It may be the Candesartan? Plus, if it were my husband, I would like the docs to check liver and kidney function. But that’s me. I think I’m smarter than the doctors. I’ll attach an article about the candesartan.
Thank you will check in with the gp ondec 3rd for appointments. He just had his labs done. Maybe candasartan isn’t the right choice anymore. Appreciate your help.
If it is not then let me give you the advice I normally give for high blood pressure:
Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Discuss these with your doctor including side effects. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res....
Btw, Tramadol does not cause augmentation. I, for one, do not understand your husband’s history with RLS and how he wound up on some of the strongest opiates out there. ALOT of people find relief with Tramadol or Codeine. Good relief!
He does not need to wean off the methadone. He can switch directly. Someone else will be able to give you the equivalent dose, but he might want to try the patch since it spreads out the dose over 24 hours rather than all at one time. If he does he will probably find out as others have that a 7 day patch lasts only around 5 days. People usually put the new patch on but leave the old patch on at the same time for the 7 days.It also takes awhile when you start it to be effective.
For itching try one of the non sedating antihistamines claritin, allegra or zyrtec.
Looking at your previous reply, he was taking gabapentin wrong. Also the average effective dose according to the Mayo Updated Algorithm is 1200 to 1800 mg so he may not have been taking enough.
Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. Since he needs more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If he needs more than 1200 mg, take the extra 6 hours before bedtime. He was taking 600 mg at 5, 300 mg at 8 and 300 mg at 10. It should be 600 at 10 and 600 at 8, assuming 10 is 1 to 2 hours before his bedtime.
If he takes magnesium he shouldn't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and he shouldn't take calcium nor calcium-rich foods within 2 hours for the same reason. Have him check out the Mayo Clinic Updated Algorithm on RLS which will tell him everything he wants to know including about its treatment and refer his doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at mayoclinicproceedings.org/a...
I would try to increase the gabapentin before giving up on it. If he does decide to come off it he needs to do so very slowly to avoid withdrawal effects. Reduce by 100 - 200 mg every 2 weeks. If he does so he will have very few or no withdrawal effects. If he does have any, slow down even further, In very very rare cases he still might have withdrawal effects
You say Gaviscon did not work for his acid reflux, but was it Gaviscon Advance as this is the one he should take.
He is taking iron but has he had his ferritin checked? If so what is it? This is the first thing his doctor should have done. Improving ones ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when he sees his doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before, fast after midnight and have his test in the morning before 9 am if possible. When he gets the results, ask for his ferritin and transferrin saturation (TSAT) numbers. He wants his transferrin saturation to be over 20% but less than 45% and his ferritin to be at least 100. If they are not, post them here.
The slow release iron bypasses the area where the iron is absorbed.
If he takes blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with his doctor.
Since he has gut problems he should take 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption. If even the iron bisglycinate bothers his gut, then try liquid iron making sure it has at least 65 mg of elemental iron. He could also take it or take the iron bisglycinate with food although less will be absorbed that way. If even that doesn't work he could try heme iron although less is absorbed.
Take it every other day as more is absorbed that way, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.
If he takes magnesium (or magnesium rich foods), calcium (or calcium rich foods) or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.
Don't take his iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron. If he takes thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, low potassium. eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If he is taking any I may be able to provide a safe alternative.
Thank you Sue, for confirming that he doesn't wean off the Methadone, that was our worry. I will also ask Joolsg in her reply, but if he was prescribed a Butrans 5 Patch is that enough to cover the switch over from 10mg of Methadone? Is he better to switch to the tablets/sublingual now rather than make the switch from the patch later on?
With regards to the Gabapentin, - he started out with only gabapentin and then when the neurologists received approval months later he added the Methadone. Initially there was no direction to how to take any of these just in the evening, and when I found your forum, I passed along how to take it and we followed your directions to the letter - the methadone we were on our own to try and schedule. The RLS forum had talked about the alerting and that is when started trying the methadone earlier in the day also. When none of these things were working well - by chance he had tried taken a later dose of Gaba one night - it worked well.. for about two weeks... and then it didn't anymore. So since then we have been back to traditional Gaba dosing as per your recommendations. At this point in time, none of it is working well - he just spent the night walking on these dosages as mentioned in my post. That is why we are going to try the Buprenorphine.
With regards to the Gaviscon - I know initially we only had access to Gaviscon not Gaviscon Advance here.. His reflux is due to a deformed stomach valve and is very severe - so I know early days (30 years ago) when he was using antacids/heartburn OTC and the then newly released pepcid AC they were helpful but not nearly effect as the medication he is on now. It would be very hard to also give up that stomach medication in the midst of all this chaos.
He is not taking any magnesium at this point or vitamins, many of his B level were high and they wanted him to stop taking everything.
Thank you for your detailed response, we will advise the neurologist of this cutover method, that was our concern was having both drugs in the system at the same time. When he has established with the Bup we will begin the wean off the Gabapentin, or do you ever need to keep some of that for any reason still?
I hope I have answered your response in full, I(we) appreciate any further comments or direction. As you know our very lives depend upon it.
Sorry in rereading your comments - I missed commenting on his Ferritin As of November 1, 2024 his Ferritin is 386 ug/L It has remained around this level since 2022. He had a full iron panel done when he initially was referred to the neurologist. None since then as they will never do an Iron infusion for him here (not for RLS patients), and his ferritin level has remained okay.
As methadone and Buprenorphine are both opioids, you usually make a straight switch overnight at the equivalent dose - however as your husband has been on 10mg methadone for some time, the doctor and pharmacist should first confirm the correct equivalent dose of Buprenorphine sub lingual.Looking at UK opioid equivalent charts, it would appear that 0.4 to 0.6mg of sub lingual Buprenorphine is equivalent to 10mg methadone, but your doctor and pharmacist really needto confirm this.
When he does, you can then make the straight switch overnight.I switched from 25mg Oxycontin to 0.4mg Buprenorphine overnight.
Gabapentin was probably prescribed to counter opioid 'alerting'.But you don't normally need such a high dose to act as a sedating drug.
So he should first switch to Buprenorphine and only after 2 weeks - while his body adjusts to Buprenorphine, should he start gabapentin reduction.
The usual advice is to reduce gabapentin slowly, by no more than 10% a week. So ask for 100mg pills. You can even cut the pills and split the powder.
Thank you for your response Jools, as you may see from my response to Sue, we are glad you both suggest the cutover method. We were concerned about doing both methadone and Bup at the same time. To be clear - as he has been prescribed a 5 mcg patch prescribed for 7 days, is that a strong enough patch to cut over from the 10mg methadone current dose? and also should he just start right away on the tables or sublingual? Also - as part of an unnecessary complication he is quite "hairy" and finding a spot to put the patch on might be tricky, I know they said not to shave either just cut the hair down. Is it easier to just avoid the patch initially? Also should you assume that the patch isn't going to last the whole week and just be prepared to put a new one on earlier than 7 days?
The Gabapentin was the first drug prescribed by his neurologist - prior to the Methadone. They also tried some other drugs in combination with the Gaba (sleep aids, and seizure drugs - none of which helped), we had to wait for approval to take the Methadone here for some months. Interesting side fact about that - had our Neurologist not applied for special clearance to prescribe him the methadone for RLS, we would still be waiting thru current days via the traditional pain clinic channels for that drug. The alerting started after he had been on the methadone for awhile, and when I read on the RLS forum about it it seemed to apply to him. He would take the methadone and then be exhausted and then suddenly be wide awake for hours (but still exhausted) , so we tried taking it earlier in the day which seemed to help (again for awhile) Last year in November he was doing this and for one whole month and a half we actually had a near normal life - he could take it and have a proper sleep (in RLS terms). In January it just suddenly stopped working like that. He then increased the methadone to the 10Mg and the gaba increased also and then we also tried the Gaba at a later time - that helped for a bit and then didn't again.. So now we are back to traditional dosing times for the Gaba - the Methadone he still starts taking earlier in the day. At times (like last night) it is like we are back at the very beginning of this.
I mentioned in the reply to Sue, that he will as directed slowly wean off the Gaba - is there any reason to stay on it all after being on the BUP, or would you come completely off it.
As I indicated to Sue, I cant tell you how important this forum has been to us, when we went to pick up the prescription for the patch, and had questions about the methadone weaning, I knew I had to discuss this with "you" first, if we had not had this opportunity, I can't imagine what we would have done without it. It is very scary being out there (for my husband but I speak on both of our behalf) and being told to try things that may or may not help, and may or may not affect you adversely. Particularly where we are located, we do not have access to the same numbers of people being treated for this, so it always feels a bit lonely. I read your forum every night, and it has gotten us this far. Without it I know my husband might not be here.
As always appreciate any further comments or direction with this new course of action.
10mg methadone is equivalent to 15mg morphine. And the 5mcg patch is also equivalent to 15mg morphine.So technically, the doctor has given the correct dose patch.
However, the 5mcg patch is extremely low and most RLS patients use the 10 or 15mcg patch. It might explain why your husband still struggled with RLS - the methadone dose just wasn't high enough.
And the patch seems to run out at day 4/5 for most people taking it. The sublingual pill is better for most RLS patients as it releases most of the active ingredient in the first 11 hours. And that's when it's most needed.
I would wait and ask for the sublingual pill.
The usual starting dose is around 0.4mg. Ask for 0.4mg. If you mention the Mayo algorithm, they list the average effective dose as between 1 and 1.5mg. But most people on this site do very well on lower dose of between 0.4 and 0.8mg.
And gabapentin doesn't work for many people after augmentation on dopamine agonists. Once you get the Buprenorphine sublingual pills, wait a week or so and only then start reducing gabapentin. The only reason to stay on a low dose of gabapentin ( no more than 200mg) is to counter any opioid induced 'alerting' or panic attacks.
Thank you - this is excellent information - exactly what we need. It makes sense about the gabapentin for him - it has never really done as much as expected for him. Our fingers are crossed that this will finally be the answer. Much appreciated
Yep. Nearly every dose equivalence chart by every hospital is slightly different. And national equivalence tables.But, the proof will be in the pudding. The usual starting dose of sublingual pills in N.America is 2mg - simply because that's the smallest dose pill.
But as we know from on here, most people do really well on much lower doses.
I suspect this patient will need 0.4mg.
Most equivalence charts point out that finding an exact equivalence for methadone is difficult as it can be affected by length of time on the drug.
You can get Gaviscon advance on Amazon in Canada. As far as whether the 5 mg patch is equivalent to 10 mg methadone I have no idea. You said your pharmacist didn't know the equivalents. Perhaps you can ask another pharmacist. Or you could email Dr Buchfuhrer who freely gives advice and ask him. His email is somno5586@outlook.com
Thank you Sue, we will get the Bup started and the Gaba tapered off and then look at other things to change like Magnesium, and stomach issues too. I appreciate your response and help
Can I ask for your doctor's name and what city he is located in as most doctors won't prescribe buprenorphine nor will they even listen to patients so I keep a list of doctors who will in case anyone else needs a name.
If you can switch the Rx to sublinguals - pills or film strips, I'd recommend doing so. Advantages: 1. You can very quickly determine the right dosage. Start low (.4mg or so) and if symptoms persist after 30 minutes, take a little more. It is fast acting. 2. You avoid the main patch issues - 24 hour or longer delay in effectiveness because it takes a while for medication to build up in your system, and determining when to switch (5 days? 6 days? 7 days?).
If you can get sublingual pills in a .2mg size, that would work fine. If they only have larger sizes available, I'd recommend using the film strips. They generally come in a 2mg buprenorphne / .5mg naloxone size, but they are much easier to cut down to lower dosage than trying to cut a 2mg pill. I generally use 1/6 of a strip (.33mg). Some doctors feel safer prescribing these strips (brand name Suboxone) because they include naloxone which makes it harder to abuse it.
To repeat what others have advised. Joolsg says all forms of Buprenorphine cause dry mouth during the night - for many and it's the lack of saliva that causes the tooth issues so buy products for used for dry mouth which include biotene mouth wash and spray. Chewing sugar free gum will also increase saliva. Someone suggested Boots Dry Mouth Spray.
Joolsg also said she used Saliva Spray for Dry Mouth Spray Sugar Free and it takes about 2 weeks. Dougg's suggestions: Keep the sublingual tablet under your tongue and away from your teeth as much as possible.Rinse your mouth right afterwards with baking soda water or something that's very alkaline. Follow the baking soda rinse with a mouthwash called CloSys.
Per Shumbah teeth problems are more so with Temgesic since it is more acidic and people are taking multiple tablets a day or at a time. Subutex version is better as much less is required. It should always be broken into tiny splinters and pop a little splinter under tongue at a time it is absorbed in seconds with zero residue.
I read you post and subsequent replies with interest as I seem to relate. Can you please describe what “alerting” means . I tried a search but haven’t found the answer. I am on methadone 10 mg and just gone up to 12.5 mg but very worries that I keep plateauing. I am therefore very interested in why your husband is taking gabapentin with methadone.
Sorry I thought I had replied to this but I don't know where it landed.. Not really sure why he was taking both Methadone and Gabapentin... We started with the Gaba, and then added the Methadone when it was approved as per his neurologist. Honestly didn't question it at the time as we didn't have enough knowledge to do so? I read about alerting on the RLS site, under one of the message boards. When he started taking Methadone - he took doses in the evening, split a couple of hours apart - that schedule seemed to be up to us.. When the doses gradually began to tick up it probably started happening more.. Alerting - was when he would be very very tired, take the doses, feel like he could sleep.. get into bed and then like a light switch going on be wide awake but still completely exhausted. After some experimenting he switched to taking one dose at 3:00 and one at 7:00 for awhile this actually worked really well and he had some really good sleep for awhile... and then it didn't, so he tried some other times and then just went back to this time and at a still higher dose (10mg) Now he still has bad nights of RLS, and sometime still has the Alerting although not as bad I would say. We sleep in separate rooms now as there is no possible way we could get thru otherwise, so I can't say specifically when he is up and down but I hear most of it, and experience and see it the next morning also. All of this is why we are trying the buprhenine now with some hope it will be a different outcome.
I would also be grain you would post back at a later date with an update. Myself and another I know will be very interested for ourselves as well as hoping it works for him. Warm regards
Thank you and to you as well. I will definitely offer an update when available. At this point it might not be till after Christmas as we can’t even review this with neuro till mid December.
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