Stopping pramipexole and starting methadone

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ViewsAskew
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Re: Stopping pramipexole and starting methadone

Postby ViewsAskew » Tue May 16, 2017 6:35 pm

Bjorn - I likely fit into that same category. I tend to be pragmatic about things, as well as try to be informed, even when it flies in the face of what I have believed prior. I trained to be a mediator about 15 years ago and that helped me tremendously to switch on the more emotional empathetic side to understand others. Still have to do it - it is not automatic - but at least I learned that I need to!

Glad the other person is resolving. I used to date someone with two teenage boys; the kids and I knew how any disagreement would work. He would blow up and rant and rail about how opposed he was to whatever (the kids wanted ear piercings, for example). He would be what we called brain-locked on that for about 3-7 days. Then he would talk himself off the ledge, lol, and eventually become rational about it. It was as if he had to go through this processing of the situation to get to a middle ground.

And even more glad that this is much easier than before. I remember it so vividly - I wouldn't wish anyone though the cold turkey approach.
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.

connecticutgal
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Re: Stopping pramipexole and starting methadone

Postby connecticutgal » Thu May 18, 2017 6:08 pm

question....i read the last sleepwalkers issue and blogs...does the opiod have to be methadone.....if its difficult to obtain..would a small dose of vicodan have the same results......

ViewsAskew
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Re: Stopping pramipexole and starting methadone

Postby ViewsAskew » Thu May 18, 2017 7:11 pm

connecticutgal wrote:question....i read the last sleepwalkers issue and blogs...does the opiod have to be methadone.....if its difficult to obtain..would a small dose of vicodan have the same results......


Does not have to be methadone. The issues, as I understand it, with Vicoden - acetaminophen and hydrocodone - is the acetaminophen. That isn't good to take on a daily basis. Which leaves tramadol as the only moderate opioid-like option. Everything else is heavy-duty and hard to get.
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: Stopping pramipexole and starting methadone

Postby badnights » Fri May 19, 2017 9:48 am

There are lots of opioids without added acetominophen or ibuprofen - codeine, hydrocodone (in Vicodin with acetominophen), hydromorphone, oxycodone (in Percocet with acetominophen, in Combunox wtih ibuprofen), oxymorphone, and more. Codeine is low potency, hydrocodone is medium, the others I listed as well as methadone are high potency. We usually need medium or high potency opioids for moderate to severe WED/RLS, but there are lots to choose from. The Foundation has a really good webinar in which the differences among opioids, and how these might affect WED treatment, are discussed.

Every person is different, so the amount of a medication that I need will not be the amount that you need, or can tolerate (side effects vary from person to person, too).

Methadone is certainly harder to get where I live - lots more hoops to jump through, only one being that doctors need a special licence to prescribe it that they usually don't have. I use hydromorphone. It's quite effective. But with the way things are going, any of these medications might become hard to get.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

ViewsAskew
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Re: Stopping pramipexole and starting methadone

Postby ViewsAskew » Fri May 19, 2017 7:49 pm

As far as I know, you cannot get hydrocodone without acetaminophen in the US. So that leaves only tramadol in the moderate potency category.
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.

Bjorn
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Re: Stopping pramipexole and starting methadone

Postby Bjorn » Thu May 25, 2017 8:43 am

A couple of things have come up that changed my mind about taking methadone. That's right, I've decided to go back to pramipexole.

The main reason for me to take methadone in the first place was to avoid the withdrawal effects after stopping pramipexole. The ultimate goal was to not take anything at all for my RLS and I'd hoped that could happen after a short period of tapering off methadone once it had done its job of avoiding pramipexole withdrawal effects. Rather naively I thought ok maybe a month.

However, a couple of nights ago I took too small a dose of methadone (because I was trying to find the lowest working dose) and wham! I plunged into uncontrollable leg twitching and arm flailing that lasted all night and part of the following day. Pretty much convinced me I'm going to need something to prevent that from happening again and I'd need it for the rest of my life.

I had made an appt to see my regular doctor and tell him that I stopped taking pramipexole about two weeks ago and I'm taking methadone now. I really should have consulted with him about what I was going to do before I did it, but I had a feeling my doc would have not recommended it.
It was obvious during the appt that my doc was shocked to hear of RLS being treated with methadone - a radical approach he called it. He wouldn't order the Ferritin lab test that Dr B recommended. I don't remember everything he said, I just remember feeling pretty sleazy during all this. I could kick myself now for making that appt because it really rocked the boat.

So:
- methadone is very difficult to obtain and it's potentially expensive considering airfare, hotels, car rental etc
- methadone is associated with addicts and their lifestyle. If you're taking it, then you're one of them. I don't understand the reputation it has. Do people get a craving for it? I've been taking it and I get more thrills from a bottle of beer.
- the other opiods like oxycodone and morphine would more than likely be effective. But I think they're avoided because people tend to "like" them. They make you feel good to the point that they're all you think about. At least that's my understanding. Methadone doesn't seem to have that feel-good component, not to me anyway at the dose I'm taking.
- I've been on pramipexole about 12 years or so and I have the augmentation effects - earlier onset, more severe symptoms, higher dose. I deal with those things by taking some codeine with it which has worked for me. It's not ideal, but it works. What I'm saying is perhaps the pramipexole augmentation effects weren't as bad as I had made them out to be. This is what I'm telling myself.

After thinking about it and discussing the options with my wife, I decided to go back to pramipexole. However, since I rocked the boat, I no longer have an active prescription for it or for the codeine. I sent my doc an email asking that the pramipexole be reinstated for the above reasons. Don't know what he'll do about the codeine. And then I'm firing him and getting a new doctor.

Sorry about the length of this post. I was pretty depressed for a while, but I feel so much better expressing the anger.

Rustsmith
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Re: Stopping pramipexole and starting methadone

Postby Rustsmith » Thu May 25, 2017 12:23 pm

Bjorn, first the easy part - the length of your post is fine. You had some questions and points to make.

On the issue of addicts and methadone, it is totally unfair that we get lumped in with that crowd and that they make it difficult to get the medication that we need. Yes, the addicts get a buzz of of methadone, but they are also taking 10 to 20 times as much as most of us. And I totally agree with your comment about a bottle of beer :)

As for your doctor, in my mind what he did was totally inappropriate and unprofessional. He exposed personal bias, his ignorance of the proper treatment of RLS and a total lack of compassion for you as a patient. Your plan to get new prescriptions and search for a new doctor sounds like the best way to go. Once you find a new doctor, you should consider sending the current one an email to explain why you left. Be polite, but don't pull any punches. When I fired one of my doctors a few years ago, I got a phone call from one of his assistants about an hour after sending my email. We chatted for quite a while because they really did want to improve - but that was probably an exception to the rule.

As for going back on pramipexole, since you were augmented on it before, it is highly likely that you will very quickly augment again. So when you find that new doctor, keep in mind that pramipexole isn't a lifelong treatment for you. You made it for 12 years, which is 11 longer than me. Your new doctor might want to try one of the other dopamine agonists or one of the alpha-2-delta meds, but since it sounds like you are going to need something for your RLS, that means that eventually you are very likely going to end up with one of the opiods. Whether that is codeine, methadone or something else will probably depend upon what happens with out society as well as your doctor's beliefs and biases.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

stjohnh
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Re: Stopping pramipexole and starting methadone

Postby stjohnh » Thu May 25, 2017 4:37 pm

I augmented on pramipexole about a year ago, switched to neupro but then got rashes from that. In the meantime I found out about Kratom and started using it and ended up on low-dose pramipexole 0.125 mg daily and supplementing it with kratom. I have studiously avoided increasing the dose of pramipexole and my symptoms are not completely controlled, that is I have moderate urge to move jumpy legs every evening from about 5 until about 8 when the medicines that I take at 7:30 start to have an effect. By 9 I am without any urge to move my legs and I'm sleepy from the medical marijuana I take at about 7:30 also. I've been on that regimen for more than six months and have not shown any signs of augmentation yet. It is well known that higher doses of dopamine agonists lead to augmentation faster and I have started to wonder if the key is not necessarily a low dose of the dopamine agonist, but a dose that is low enough that symptoms are not completely controlled. That is, somehow by having an episode daily in which my legs are jumping that helps to prevent augmentation. Anyway, from your post and desires it would seem like you might be a candidate to try that approach, using a small dose of pramipexole and supplementing it daily with kratom.
Blessings,
Holland

stjohnh
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Re: Stopping pramipexole and starting methadone

Postby stjohnh » Thu May 25, 2017 5:05 pm

Oh, hydrocodone is available without acetaminophen, however it is extremely expensive and schedule II, making it almost never used. It is called Zohydro ER. Don't you love the FDA and the pharmaceutical industry...
Blessings,
Holland

Bjorn
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Re: Stopping pramipexole and starting methadone

Postby Bjorn » Thu May 25, 2017 5:15 pm

Thank you Polar Bear for your input. Just so everyone knows, my remark about beer was meant to be taken humorously. I'm not drinking any alcohol.
stjohnh, I've heard about kratom. I don't know anything about it. I'll check it out.

So I received an email from my doctor. He wants me to set up a telephone appointment with him to talk about the pramipexole.
Also, he referred me to the Addiction Clinic to "help me get off the methadone."
I'm sure that statement just raised a red flag on my record, but I do appreciate the opportunity to explain my situation and also to make other health professionals aware of RLS therapy.

I could have avoided all this by informing my doctor that I was planning on seeing an RLS specialist and would very likely receive a RX for methadone. He would have advised against it, but he would not have been blind sided. My fault for that. I'm still going to get another doctor though.

The other thing I could have done was..nothing. Don't say anything, just try the methadone and if it's not going to work out, stop it and go back to pramipexole. The pramipexole and codeine orders would still be active. But honesty is the best policy. Especially when it concerns your health.

I've learned quite a bit from others on this forum so I'm sharing my experiences as well, hoping they can be helpful to someone in a similar situation.

ViewsAskew
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Re: Stopping pramipexole and starting methadone

Postby ViewsAskew » Fri May 26, 2017 12:16 am

Unless things have changed, Dr B will mail you a script. You have to pay for FedEx, but I use the two day least expensive option.Not saying you should go back...just that there is another option. I smell my dinner burning...will try to remember to come back and finish my post...
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.

legsbestill
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Re: Stopping pramipexole and starting methadone

Postby legsbestill » Fri May 26, 2017 9:10 pm

I would second what Holland says. If you keep the pramipexole dose at the lowest level and in any event so low that you still experience some symptoms you might avoid a repeat of augmentation. Kratom is a great way to supplement pramipexole - I have not found it necessary to increase my kratom dose once I found the sweet spot. MMJ is a useful sleep aid.

badnights
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Re: Stopping pramipexole and starting methadone

Postby badnights » Sat May 27, 2017 10:50 am

methadone is associated with addicts and their lifestyle. If you're taking it, then you're one of them. I don't understand the reputation it has. Do people get a craving for it? I've been taking it and I get more thrills from a bottle of beer.
- the other opiods like oxycodone and morphine would more than likely be effective. But I think they're avoided because people tend to "like" them. They make you feel good to the point that they're all you think about. At least that's my understanding. Methadone doesn't seem to have that feel-good component, not to me anyway at the dose I'm taking.
WED/RLS patients tend not to get the euphoria. Some do, but a lot of us don't. I have never felt a high or euphoria or an agreeable relaxed feeling or any sort of altered mental state - only relief from the abnormal sensations and the urge to move. And I have been on as much as 21 mg hydromorphone. Maybe we don't get 'high' because our levels of natural opioids are lower than normal.

Like Steve, I caution you about going back on pramipexole. Augmentation will happen faster this time. It progresses - maybe for you, slowly, but it does progress, so codeine may not be enough after a while. And - no evidence for this, just stories, including my own - some of us think that augmenting can leave you permanently worse.

Alternatives, if you want a DA then rotigotine/Neupro might be a better choice than ropinirole/Requip because it's longer acting and seems to not cause augmentation as soon as the other DAs. It might be better, though, to try a combination of anti-convulsant (main ones used for RLS/WED are gabapentin encarbil/ Horizant, gabapentin / Neurontin, and pregabalin / Lyrica) and codeine. The combination helps keep the dose of both lower, and they target different aspects of the symptoms - one is better against the urge to move and the other against the sensations.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Bjorn
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Re: Stopping pramipexole and starting methadone

Postby Bjorn » Sun May 28, 2017 2:38 am

Two years ago, when I completely stopped taking pramipexole and then resumed it after 5 days of torture, I was able to take 1/4 my previous dose (0.25mg) for a while. Then the dose gradually increased back to 1mg. I'm pretty sure the acetaminophen/codeine helped keep it at that dose. And now I stopped the pramipexole for 13 days with the help of methadone. And, as explained above, I'm going back to pramipexole.

Two days ago I decided to stop taking methadone and took 0.25mg pramipexole. No RLS. I'm not noticing any particular issues either by stopping the methadone. And last night I took another 0.25mg dose which worked well. (I suppose I should have gone with 0.125mg but splitting those 1mg tablets into 1/8 tablets doesn't work)

I appreciate what RustSmith and badnights said about the very likely augmentation ahead. Going to do more research on that. Thanks.

badnights
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Re: Stopping pramipexole and starting methadone

Postby badnights » Sun May 28, 2017 4:04 am

Bjorn, it might be that you can deal with it by taking holidays now and then. That would be the simplest, wouldn't it. You will find the solution that's best for you.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


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