Hi, All, and thank you for your help in this forum!
As of mid-August, I am off Pram and ROP after many years of being on them and also trying everything else!
My neurologist gave me low-dose Methadone to get through it.
I have only a couple of 10 mg Methadone pills left and I still get jerking in my legs some nights on 5mg of the Methadone. With both 7mg or 10 mg of Methadone, it is gone and I feel fine. Some nights the 5 mg does work.
But, of course, that now matters very little as he will not prescribe any more and he says he is out of options.
I did get an iron infusion last spring. In August, my Ferritin was still in the 200's. Down from the 300's.
We tried Topirimate-which caused MORE RLS-and Gabapentin was tried years ago.
I am worried that in a desperate state I will go back to the PRAM or ROP!
Any advice is appreciated!!
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You could try to go back on the Gabapentin, depending on why it didn't work years ago. It does take e few weeks to start to have an effect. You must avoid any form of magnesium at the same time ( 3 hrs apart).Then you could try Pregabalin (Lyrica) which would be similar to Gabapentin.
Both have side effects, which some people find distressing.
Otherwise, some form of opioid is the only effective course.
There is a printable article on management of rls somewhere. I'm sure someone can post it ,if it's not at the bottom of this page.
I toggled back and forth between ROP and also Pramipexole for many years. Maybe 10 or more. I took about 2 mg of ROP (I think-it was usually 3-4 .5 tablets) OR I took 2-3 of the .125 PRAM tabs. I am sure I was augmenting and after much hell, was able to talk a doctor into getting off of the DA's using low does Methadone. But, he does not want to prescribe more, after a couple of months. Dr. Buchfuher says some patients need to stay on a low dose of it indefinitely. Sadly, he is not my doctor!
It's not so much as what to take but what to avoid. I would suggest that you investigate an anti inflamatory diet because rls is most often caused by inflamation of the nerves which makes them excessively sensitive.
To deny you low dose methadone after it has stopped your RLS is just cruel. As your iron is above the necessary levels and you've had an infusion, it's clear you will need meds to control the RLS.As Dr. Buchfuhrer advises, indefinite low dose methadone works very well for RLS and is cheap and effective.
Which state are you in? I presume you're in the USA as I've never heard of anyone getting methadone here in the UK.
I strongly suggest you join rls.org and find a knowledgeable doctor willing to continue the methadone.
Otherwise you will have to try pregabalin or gabapentin, both of which are controlled drugs with side effects.
Dr. Winkelman's study shows methadone is the most effective and most widely prescribed opioid for RLS in the Massachussetts opioid study. Would your doctor read the study and be prepared to discuss with either Dr. Buchfuhrer or Dr. Winkelman?
It's just perverse to have a drug withdrawn when it has clearly stopped your RLS.
That's interesting. I didn't know that so thanks for the update. Here in the UK, they are now used to get 'high' so are in the same category as Oxycontin.
Thank you, Joolsg! It truly IS cruel and I am increasingly desperate each day as my pills wind down. I have just a few left. I don't think I will be strong enough in the night when it gets really bad and I am trying to sleep. After all I have gone through to get off the DA's-and talking this (latest!) doctor into both the iron infusion and the Methadone over many months of discussion and hell-I can still see myself reaching for a little piece of one in desperation.
I am in Chicago, IL, US. I had truly hoped that with the infusion and some supplements that I could get off the drugs altogether, after the DA withdrawals. Do you think the DA withdrawals could possibly take more than a couple of months? The experts spoke of a "10 day washout period" so that is what I had been going with.
Thanks to you, I believe, I was able to email Dr. Buchfuhrer and he sent 3 articles to give to my doctor. I am not sure my doctor will be ok with this or read them. No response so far and I have tried to show him info before.
It astounds me that he would not want to help his other patients and use my experience-I literally have talked him into all of this. He and I could help so many others! Which would truly make this all much more worth it for me.
I am standing on top of the message portal hoping he will agree to read the studies, as I type!
Thank you, again, Joolsg, and Everyone! I would not be this far without you!! Truly!! xo
It's the same here in the UK. We have to print off info from Dr B and research articles and still we're treated as though we're making up how deadly serious this foul disease is. I get so, so angry at the ignorance and medical negligence.I attach info for 2 help groups near you in Illinois. They may know a doctor knowledgeable about RLS and willing to continue prescribing methadone.
ConnieTN@rlsgroups.org
northernillinois@rlsgroups.org
Let's hope the medical profession start to take us seriously and treat us effectively.
I know-for an actual neurologist to not keep up on studies or even know about RLS-they should have their credentials taken away. the extreme suffering and amount of research we have to do on our own-still in 2021!- is appalling.thank you for this info-very helpful, as usual! xo
It's the same here in the UK. We have to print off info from Dr B and research articles and still we're treated as though we're making up how deadly serious this foul disease is. I get so, so angry at the ignorance and medical negligence.I attach info for 2 help groups near you in Illinois. They may know a doctor knowledgeable about RLS and willing to continue prescribing methadone.
ConnieTN@rlsgroups.org
northernillinois@rlsgroups.org
Let's hope the medical profession start to take us seriously and treat us effectively.
Hi, Joolsg. Well, as I wrote to Puzzler, I have been hanging by a thread with no help. My neurologist said he would read the 3 articles sent by Dr. B and he did not. So I lost days waiting for that. Dr. B said he would speak to my doc, if he called him. He is not responding to me or calling, thus far anyway.
I did send an email to the help group. No response yet.
Tonight will be hell and I know I will resort to my old DA drugs. After all of this work to get the iron infusion and the methadone to get off of them. I am at the end of my rope on this fight. It is so sad.
I do have a doctor brother in law in another state. I have not mentioned this methadone fight to him or asked his help as I did not want to put him in a bad position legally. I don't know if he would get in trouble or if it is even possible for him to prescribe it. About to call him now.
I really, really hope you don't have to go back on DAs. The agony will just be prolonged.I'll be sending positive thoughts in the hope that your doctor listens.
Thank you! Well, it's been another long day of begging and waiting. He now says he will prescribe them for a bit longer until I get in somewhere else. (Although I have no idea where to go for this specific opioid help, even in the giant city of Chicago.) He also said he called the prescription in but the pharmacy does not have it.
So-I am worried for this night! I have a partial pill only. I will try very hard not to take any of the DA's sitting here! Thanks a bunch!
I didn't make it through without taking Ropinirole. It worked so well that it made me wonder what is so bad about it, other than the augmentation issue. Sigh. Compared to the methadone side effects, etc.Today I should be able to get a little more of the methadone until I can figure something out. xo
I totally understand. When I was taking Ropinirole, I could still sleep at night BUT the intensity of the daytime symptoms became unbearable. It moved to my arms, shoulders, hands & face! I became increasingly irritable & the only relief was to walk constantly.After getting off it, the intensity was gone, I just had the normal unbearable sensations, not the super charged version.
So I understand.
If the augmentation is very intense and unbearable, it really is best to get onto another drug.
Let's hope you find a decent doctor.
The US foundation is now holding a list of knowledgeable doctors so do consider joining and contacting them for the list.
You poor thing-that is just beyond hell. As I well know. For me, once I actually figured out I was augmenting, I just switched to Pramipexole and everything was back to "normal." Then I would switch again, eventually.I am seriously wondering today what was so bad with that plan! I will get that list-thank you!!
Hi, Joolsg, and anyone else reading. Awful update: there was a mixup at the pharmacy and so last night I went without the 5-7mg of Methadone I had been taking.
I took my last tiny piece of Methadone 2 nights ago-then caved and took some ROP.
So, last night I had nothing left but assumed the ROP would have to do and that it WOULD work. much as i hate to go backwards.
OMG-it was one of the worst nights of my life. I must have been withdrawing from the Methadone!! already!
My entire body had RLS! I was rocking on the bed, jumping around the condo, sweating and heat flushes constantly! pure pure HELL.
I took ROP and it did NOTHING.
the pharmacy opened at 9 a.m. and with 1/2 a pill-5 mg-I am back to being a normal person! No symptoms of anything. For now.
I truly now see that I am in an even WORSE position than I thought I was.
What a horrible mess I have created for myself! And with only 14 pills given to me as a reprieve-no idea how to proceed, as I now see the hell ahead if I continue taking the Methadone and do not taper down to zip. so then what to do with the RLS that will hit?! I will have to take the ROP. or pramipexole. which, as you know, i have been off of for 2 months. until now.
Thank you so much for your advice. My doc did relent and give me 14 more 10 mg methadone pills. Which is why I was better yesterday.
Should I taper down the methadone now, which I clearly must do, and see if he will prescribe the pregabalin?
I wrote to that support group and they wrote back and said they couldn't help at all. I said-you have no list of RLS doctors? What kind of support group is THAT?! So odd.
I have been taking Ropnirole again the last 3 nights, sadly, although it did not help the night I was without any Methadone.
I had always thought the iron infusion would make the difference after I got off the DA's. But, that did not seem to be the case. Most of the time that I took less of the methadone, I had RLS. Some nights I could get away with very little methadone. But not often.
I'm sorry the help groups in the US were unable to give any recommendations for doctors. I still think it's worth joining rls.org - the US foundation. Their latest newsletter mentioned that they're compiling a list of RLS doctors in the USA.So, what do you do now?
Clearly, there is no point taking another DA because you'll just prolong your agony. You augmented and that will just get more and more intense if you take more Ropinirole or Mirapex.
Your doctor will not give you long term methadone so unless you find another doctor in the next few days you have to formulate a plan to reduce the methadone and start replacement meds for your RLS now.
Assuming you can't find a new doctor who will continue the methadone, ask for pregabalin now and start taking 25mg first night, 50mg second night, and increase by 25mg every other night up to 150mg.
This will not take effect until 3 weeks later.
Withdrawal from methadone is not something I know anything about and as it's not prescribed here in the UK, you will only get comments from the US members. It may be an idea to post a separate post headed 'methadone Withdrawal' and any US members of this forum can add their advice/comments.
It's going to be a very tough 3 weeks.
It will be tough reducing the methadone as you increase the pregabalin. You will suffer sweats, chills etc from the methadone withdrawal and lack of sleep and very intense RLS because your D1 dopamine receptors will be screaming.
Thank you so much for the detailed help! I did join the RLS. org group but the list of doctors so far has been difficult to investigate. There are only 3 listed. They seem to only be available through a giant sleep center with multiple locations and it is difficult to get any information. I can't get a handle on whether they use opioids or not.
PS-if you can even believe it-there are only 3 doctors listed in IL. I live in the giant city of Chicago. AND-two of the 3 doctors listed in the suburbs have a phone number on rls.org that is no longer in service! Of course, I am trying to track them down. Just so crazy how hard this is when I live in such a metropolitan area.
UPDATE! I did get an appt. just now with the 3rd doctor listed-whose number actually worked. They said on the phone that she does prescribe opioids. WHEW!! She is 1-2 hours away but at least in the area.
Thank you, again! You are right-that was super cruel and I pray no person has to go through a night like that ever. Although this community is full of people doing just that. So so sad. xoxo
Thank heavens you found someone.It's the same here in the UK. In the whole of the UK ( 70 million people) there are about 5 neurologists who have any knowledge of RLS and of those, a few still prescribe dopamine agonists even though most experts realise this is a no no.
It's a worldwide scandal.
It's not taught at med school or during training yet It's the most common neurological disease with a very high suicide rate.
I still get so angry about it. I have highly aggressive MS but I make sure every doctor I see is aware that MS is nothing compared to severe RLS. It's often the only way to make them listen.
I really, really hope the new doctor continues to prescribe methadone. Dr. Winkelman and Dr. Buchfuhrer both prescribe it and the Massachussetts Opioid study can be used to show long term use at low dose is safe and highly effective.
I am so sorry for you suffering and I share your anger. That is incredible about the UK, as well. Thank you so much-on my way soon and will let you know! xo
Well, I feel like he was helpful and at least he prescribed more methadone so I will never have to go through that kind of withdrawal night again. but, he disagrees with some of the research that we all discuss here from John Hopkins and Dr. B, etc.
he says he will not keep me on it long term as i will need more and more mg's of it. Dr. B doesn't say that and seems to think you can stay low dose.
this doc does not think opioids are safe and they can cause heart issues, death, memory issues. i kept saying-even at this low dose!? but then he said-for NOW but you will just need more and more.
he will not let me try the other opioids that i mentioned some of the people here are taking, such as the buprenorphine.
he also didn't seem to think it was bad to take higher doses of PRAM and ROP, which Dr. B now puts a low mg cap on (i heard that in an online slide presentation talk he gives).
he didn't think it was a big deal that I had to go back to ROP this week-thus ruining my streak of getting off of it in august.
he gave me Horizant which seems to be a type of gabapentin-which i hated before when i tried it and my eyes were so weird on it. but he said this was different than that and just to try taking it at 5 p.m. one night.
this doctor actually has RLS himself and his parents and grandparents suffered greatly with it.
ok-i was just trying to remember the highlights of the appt. for you. i know its a bit disjointed.
he also took a urine sample and asked me how my vitamin D is. he said ferritin needs to be over 100. (i have recently heard 300 in other research.)
let me know if you (or anyone reading) have any thoughts or questions!
Sadly, I have been to at least one of these docs and he did the old school routine.That’s the problem-finding a neurologist who is studying the latest research.
The doc I saw yesterday is one of only 3 docs listed on rls.org and he doesn’t agree with all of it although at least he was compassionate and helpful.
Interesting. Hopefully Dr. Winkelman's opioid study will prove that RLS patients do not need to increase the dose. That's the whole point of it. To prove to US legislators and the medical profession that low dose opioids are safe and effective long term, unlike dopamine agonists.He may we suffer from RLS but I wonder if he takes Ropinirole or Pramipexole? I'll bet he doesn't. If he had ever suffered augmentation and withdrawal, I'm sure he'd change his views.
Let's hope the Massachussetts Opioid study is published and accepted before he tries to stop you taking methadone.
The average daily dose for severe RLS is 15mg and people have been on that for over 10 years without ever increasing the dose.
Diet is a trigger for many people, especially the artificial sweetener in diet coke. The only way to know which foods and drinks trigger RLS is to keep a detailed diary. Caffeine can worsen RLS for many but there was a post a few years back where someone reported that coffee ( both caffeinated and decaff) improved their RLS. Whenever they had an attack at night, they'd drink coffee and the RLS would disappear.
Several others then reported it helped them.
So food and drink triggers are different for everyone.
More than happy to pass on the tips that I've learned on here and from reading all the medical textbooks. Dr. Buchfuhrer's book is my 'Bible'. I take it to all my medical appointments.
Thank you, as always! I was out of town but I'm now back and need to focus on what to do next. I may post a question about the above-to see what most say. xo
Hello Joolsg,Do you by chance know any good doctors in NY that treat RLS? Most don't know much or are interested in alternative treatments. It's tough!
Hi, Elffindoe. As you can read above in response to Joolsg-I have tried everything. I am down to less than 1/2 a methadone 10 mg pill. My neurologist will not respond, did not read the articles after telling me that he would, and he is not calling Dr. B to discuss. Tonight will be the night I am forced to go back to the DA's. I wonder which is worse-PRAMIPEXOLE or ROPINIROLE? Lucky me, I have both from which to choose. This is so sad!
Hi Teddi, If your doctor can't (or won't) continue with the methadone, you could ask for Buprenorphine which is another opioid but considered to be safer. There's a growing use of this in the UK and I believe it's widely used in USA. Take a look at the Mayo clinic algorithm suggested by Elfindoe and you'll see the opioids listed for Refactory RLS. In the UK most users are on Temgesic which is a microdose of buprenorphine and taken under the tongue. My wife is taking 400mcg a night (or 0.4mg) and finds it helpful. In USA I think it's quite widely used and you can get a bucal form which is a film that dissolves in the mouth. On the other hand, try to convince your doctor to continue with the methadone to help with the Pramipexole withdrawal which can take much longer than doctors anticipate. My wife has been off Prami for10 months but she's still suffering quite badly despite the temgesic and gabapentin. We are asking our doctor to try methadone (she says we must exhaust all other options first - hence the gabapentin!) and I'd be interested to hear your experience with it and if you have side effects like sweats or hot flushes.
Thank you for the info, Puzzler! I was wondering what the difference exactly is between Methadone and Buprenorphine. Although my doctor so far has not offered any substitution. He says he only agreed to get me through a short withdrawal period. I have wondered over and over if I am still IN that period, even though the experts spoke of a 10 day washout period. So, thank you very much for your comment! It has only been 2 months off the DA's for me, after many years on them.
Also, I am so interested in your sweats and hot flushes question; I am using bioidential hormones and have been wondering this entire time if the hot flashes and sweats are due to a hormone imbalance (common for me) OR the Methadone! Gosh, it is so much fun to constantly have to try to doctor yourself. Geez-I have no idea on this issue and it is not fun.
Otherwise, the Methadone works great-stops the RLS quickly. It also helps you to sleep! YES! But take the lowest dose, if you ever get some. Start low and slow-lower than what they give you. I weigh about 132 lbs (if that is a factor in dosages) and started with one 10 mg pill. It was too strong at first-I did odd things like organize shelves in the night (not all bad-lol). I halved that to 5 mg and then usually had to add a quarter pill. So, around 7 1/2 mg worked perfectly for me most of the time. Sometimes I needed the full 10 mg pill and the weird organizing did stop-lol.
It is very constipating, so you have to deal with that. And be careful driving long distances until you have a feel for it. You can fall asleep on a dime during the day sometimes, although mainly just if you are sitting around. If you are busy or moving-you don't notice the drowsiness at all.
I truly hope your wife can try it soon! (And that I can somehow get more or some other help-omg.)
Teddi, it is known that 'all' opioids reduce gonadal hormones. Hence the sweats and hot flushes that are not an uncommon side effect of opioids. Suppleting as you do with hormones may take the edge off. Also antihistamines like desloratadine (NOT the sedating ones!) may improve this side effect. I take both. It is not gone but definitely better.
Omgosh! I did not know any of this!! I am having hot flushes all the time. Thank you for writing. Are you saying that I should take more of my bio-identical creams (progesterone and estradiol)?
Would that antihistamine exacerbate the RLS? I am guessing not?
I will look up gonadal hormones and desloratadine as I don't know about either. Any additional info you have would be great.
Thanks a bunch! I am SO HAPPY you took the time to write.
More hormones is NOT better! As you know they come with a risk. Also, the effect of opioods on gonadal hormones is know but not well know and certainly not well understood. Joolsg and I both found that non-sedating anti histamines are suggested as an antidote to the sweats/ hot flushes. But in my source(s) it was only mentioned, without rationale, explanation or research to back it up. I don't have the info here on my phone, so can't give the link. Also, I have been prescribed desloratadine for allergies. I usually only take them when needed , but am allowed to take them daily. Have sone for the past 3 weeks. It seems to help a bit, but so does the HRT that I didn't stop in that time. Jury's still out I am afraid.
Anyway, don't experiment too much on your own. All things/meds have (side) effect and can be harmful. Inform yourself thoroughly and above all discuss with your doctor.
Thank you so much for clarifying. I hope I can soon find something else besides the methadone, especially with this new information. I truly thought the hot flashes and sweating were from my hormonal situation, which I am always trying to balance. At the 11th hour last evening, my doctor gave another short prescription. But, I did have to resort to Ropinirole last night-as I knew I would. Which broke my withdrawal or record of being off DA's since August. Sigh. Sadly, it did make me wonder what is so bad about ROP, other than the augmentation. It worked so well last night. And so different from the Methadone and all of those side effects.
PS-she might also experience extreme itching at first, which I did. Another reason to take the lowest dose possible.I have been hanging by a thread with no help. My neurologist said he would read the 3 articles sent by Dr. B and he did not. So I lost days to that. Dr. B said he would speak to my doc, if he called him. He is not responding to me or calling, thus far anyway. Tonight will be hell and I know I will resort to my old DA drugs. After all of this work to get the iron infusion and the methadone to get off of them. I am at the end of my rope on this fight. Omgosh.
After slowly weaning off Sifrol (Pramipexole) I changed over to Temgesic sublingual 200mcg tablets. I am successfully controlling my RLS which I have had for 50years. Temgesic is micro dosages of Buprenorphine.
I place 2 tablets under my tongue to dissolve each night. I usually do this 30mins before bed. They have a slight bitter taste but I find I sleep well.
I have used them all and have gone through negative side effects and augmentation. I’ve been to two neurologists, one even being a movement specialist, with nothing new to help. I finally decided to try CBD and it works 95% of the time. I take 75mg 2 Hrs before bed. I do warn those wanting to try CBD that they get it from a reputable company, not just at your local drug store. Reputable companies will have their products 3rd party tested and a number where you can see that testing online. The first time I tried CBD I bought locally and it made me sick. Also, always start with a low dose and work your way up to what works for you. Everyone is different. CBD is all natural and I’ve had no side effects. Good luck finding something that works for you.
Hi and thank you! Are you saying you also tried opioids-methadone, etc.? I did try CBD oil years ago and didn't get relief. I also hated the taste and taking the oil.But, I would try it again, especially with this info.
Sorry I should have been more explicit. I have not tried methadone, bupenorphine or temgesic because it is almost impossible to find a doctor in the US to prescribe them. At least back two yrs ago when I started using CBD which I am very happy with. I’m allergic to opioids as they make me want to rip my skin off. I could never stay on them long enough to see if they will work. I refuse to never take DA’s, Gabapentine or benzodiazepines again because of side effects. I take my CBD in capsules. No bad taste and easier to tell how much I’m taking. Makes it easier to start low and work your way up to what works for you. I order from Lazarus Naturals. (LazarusNaturals. com) I personally take two of their 25mg relaxing capsules and one 25mg oil capsule 2 hrs before bed. I have been taking for two yrs with no side effects. Just be advised that it’s not cheap. If you want to order from Lazarus they give a 60% discount for veterans which really helps. I order through my husband. Let me know if you need any other info.
That is SO helpful! Thank you! I am in Chicago. I will try this, at some point, for sure!! Thank you for being specific, as I had already tried both CBD and gummies along the way. So glad for YOU, too!! This solution has so many BENEFITS instead of all the side effects-fantastic. xo.
Thank you! I just ordered what you specified. They only have a 10 count available right now for the oil capsule but that will be enough to test both out. Thanks, again!
Remember to start with one for a few nights, if not helping, go to 2 for a few nights, etc. Take them two hrs before bed. If you take other medications at night, put an hour between the CBD and meds. CBD can cause prescription drugs to not be as potent if taken at the same time. Let me know how you do. Praying this works for you too!
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