Uh-oh... methadone hassles?

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mudslide
Posts: 36
Joined: Sun Jun 08, 2014 7:23 am

Uh-oh... methadone hassles?

Postby mudslide » Mon May 14, 2018 5:36 am

Here's my story as briefly as possible. It's probably familiar to some. Five days ago, out of the blue, I got a letter from my doctor's office saying he was no longer practicing there. He had been prescribing my methadone. A day later, the office nurse left me a message that the other two practitioners in the office "do not prescribe methadone" and I'd need to find another doctor. At that point I had 16 doses left. Called the PPO where I'd formerly gotten my medical care (my former doc there had initially prescribed the methadone after Mirapex augmented and all other options were exhausted). The soonest appt I could get with a new doc is June 8. I will be out of methadone by then.

Casting about for ideas, I went to the PPO's walk-in clinic yesterday to see if anyone there might understand my dilemma and be helpful. Was informed by the front desk that they couldn't prescribe scheduled drugs -- which I understand. Was seen by a PA who spent a long time silently looking up RLS drugs, all of which I had failed or insurance wouldn't cover. In the absence of other options, I finally agreed to try Mirapex again. The PA told me that when I do get in to see the doc, as a new patient I will have to go through a process before he can start me on methadone again. And I'm wondering if this doc will turn out to be another who "doesn't prescribe methadone" altogether. The methadone has worked so well for me. I will try the Mirapex again, but I've read that on second tries augmentation can happen fairly quickly. I'm trying not to freak out and catastrophize prematurely, but I am worried.

I'm thinking to experiment with a combo of methadone and Mirapex, each at a lower dose, and maybe I can stretch out my methadone supply that way, but that's just a short-term strategy. Any other ideas or cautions would be welcome.

There's one more element of the situation that adds to my concern. I recently discovered in my online medical record a notation that reads "Pain med agreement broken 10/24/16." It's completely inaccurate and I don't know how it got in there. I did whatever I was told to do, which as far as I remember was just to give urine samples a couple of times and probably sign a form. I’ve disputed it online, but I have no info on how that process involves or what it takes to get it deleted. At this point all I’ve got is my word against the med record. I was especially unhappy when I got home yesterday and read what the walk-in clinic PA had written in the summary of my visit, which was “Reason for visit: per patient she wants a refill on Methadone for her RLS.” Now I really sound like a drug-seeker! I would be very grateful for any advice on how to conduct myself to counteract that impression. I'm 74, and I wish I could play the Sweet Little Old Lady card, but I don't think that works any more.

Thanks to all who read this and who moderate the board. I haven't needed it for a long while, but I'm sure happy it's still here now.

mudslide
Posts: 36
Joined: Sun Jun 08, 2014 7:23 am

Re: Uh-oh... methadone hassles?

Postby mudslide » Mon May 14, 2018 6:11 am

After I posted this, I discovered that my posts from four years ago are still in existence -- looks like there's a lot of valuable info in them that I need to remind myself of. Especially about Mirapex and methadone, whaddaya know! So I should probably ask people not to spend time and energy responding to my earlier post tonight until I've had the chance to read up on the old info. Might get my questions answered from that.

ViewsAskew
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Re: Uh-oh... methadone hassles?

Postby ViewsAskew » Mon May 14, 2018 6:39 am

Oh, mudslide, what a pickle you are in. And, the record! That must be terrifying!

I am feeling really nasty at the moment and I want to respond. Will come back soon. Hope others chime in and have some ideas.
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.

Polar Bear
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Re: Uh-oh... methadone hassles?

Postby Polar Bear » Mon May 14, 2018 8:54 am

mudslide - not a good position to be in. To know what works for you and yet a doctor can't use his initiative to treat you.

I don't know how the system works in the US regarding requesting certain medications from a new doctor but it does seem that a certain process is started from the very beginning without taking on board what a previous doctor has been willing to prescribe. If there are processes and hoops to jump through, presumeably the previous doctor would already have followed this before prescribing. Perhaps each new doctor must do this, be it a government ruling, or a ruling from their overseeing medical body ???

There is a link at the bottom of all of badnights posts, use it and go to the link
Buchfuhrer 2012 _GOOD _Strategies for the Treatment of RLS.pdf
In this link there is detailed information regarding the use of the different RLS medicaions including Opioids.
Perhaps it would be useful to take a copy of this when you meet with your new doctor, highlighting the section on opioids.

On the RLS Foundation web site there are different publications available, some are free and for others you have to be a paid up member.
If you are paid up member of the RLS Foundation there are several publications available which could be useful for discussing treatment with GP. I do hope that your new doctor will be amenable to such documentation. Or in the alternative be the most amazing and well informed RLS aware GP that you could have found.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Rustsmith
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Re: Uh-oh... methadone hassles?

Postby Rustsmith » Mon May 14, 2018 12:40 pm

mudsline, there is an excellent paper that was written in January of this year that was co-authored my most of the RLS experts in the US. The paper was written to explain to PCPs why opioids are necessary for RLS patients who are post augmentation. I recently had to switch doctors for reasons somewhat similar to yours. My new PCP read through the paper and has since been sharing it with others in the practice. Here is a link to that paper: https://www.mayoclinicproceedings.org/article/S0025-6196(17)30825-X/fulltext
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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Location: Palo Alto, California

Re: Uh-oh... methadone hassles?

Postby stjohnh » Mon May 14, 2018 1:53 pm

Mudslide,

Besides what you are doing (trying to find new doc, restarting Mirapex w a lower dose of methadone), I'd order some kratom today! You have a good likelihood of getting control of your RLS using low dose Mirapex 0.125mg plus kratom plus much lower dose methadone. You may even find that kratom plus Mirapex will control your symptoms without methadone.

Adding gabapentin to your med cocktail may help even more. One of the discoveries over the past couple of years has been that for many people with RLS, a combination of low doses of several medications works better than a higher dose of a single medicine, giving better control and having fewer side effects.

Also be sure and get your ferritin checked and be sure the number is at least 75, preferably over 100.
Blessings,
Holland

legsbestill
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Location: Dublin Ireland

Re: Uh-oh... methadone hassles?

Postby legsbestill » Mon May 14, 2018 3:41 pm

Plus one for the kratom suggestion. It is a fantastic as-and-when remedy and seems to support most other treatments well.

mudslide
Posts: 36
Joined: Sun Jun 08, 2014 7:23 am

Re: Uh-oh... methadone hassles?

Postby mudslide » Mon May 14, 2018 7:38 pm

Thanks, all, for your responses. It is a great comfort to have your understanding, support, and suggestions. Steve, I'd already found and printed out the article you mention (but thanks); also, I have the clinical manual, the RLS Fdn newsletters' relevant articles, and Dr. B's article (thanks, Betty). (And I am a member of the RLS Fdn.) So I'm well armed with resources of that kind and will bring a fistful to my appt. I've been debating whether to highlight the most pertinent passages of said resources, wondering if it might look as if I'm protesting too much.

Holland and legsbestill, I've known about kratom from my past reading of this forum, been curious about it, and am willing to try it now that this situation has arisen. Thank you for suggesting it. Questions: Is there only one type? How do I determine dosage? And if used with Mirapex, can the M. dosage be so low that augmentation is unlikely?

I still have to go back and read my threads from four years ago and am hoping for some useful info from there too. Ciao for now and again my thanks.

stjohnh
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Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Uh-oh... methadone hassles?

Postby stjohnh » Mon May 14, 2018 8:29 pm

Mudslide, there are lots of different kinds of kratom, the most commonly recommended in these forums seems to be the red vein Borneo. That's what I use. I would start at a half a teaspoon, wait an hour or so and if no effect try another half teaspoon.
Blessings,
Holland

Rustsmith
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Re: Uh-oh... methadone hassles?

Postby Rustsmith » Mon May 14, 2018 8:59 pm

Mudslide, I wouldn't to too wild with the highlighter, but there are a couple of sentences in the abstract of the opioid paper that you might want to point out. The very first sentence is important, where it states that we are different from chronic pain patients. There is another that states that opioids are the mainstay treatment for refractory RLS. Finally, near the end of the paper is a section that discusses the low probability of addiction due to the low dosage that we receive as compared to just about all other uses of opioids.

But you also need to get a feel for how receptive the doctor will be to receiving this info. Some doctors do not react well to educated patients. I had a former neurologist who stomped out of the room and said "WELL, obviously you know more about this than I do" when I pointed out that Horizant had received FDA approval for treating RLS after she had said that gabapentin wouldn't provide me with any benefits. On the flip side of that, I explained my role with this discussion board right up front when I first saw my current neurologist. The tenor of our conversation changed immediately to one where we discuss RLS almost as peers. These days, my regular appointments often end up being discussions of the latest RLS research rather than how to adjust my treatment plan.
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.

debbluebird
Posts: 1848
Joined: Mon May 21, 2012 3:27 pm

Re: Uh-oh... methadone hassles?

Postby debbluebird » Tue May 15, 2018 3:40 am

So sorry you are having to go through this, with finding a new doctor.
I agree with everyone who wrote. I am a methadone patient. I also take gabapentin and kratom, that way my methadone dose stays low. I occasionally take a DA, no more than once a week only because I would have issues with augmentation.

mudslide
Posts: 36
Joined: Sun Jun 08, 2014 7:23 am

Re: Uh-oh... methadone hassles?

Postby mudslide » Tue May 15, 2018 5:29 am

Holland, I'm going to hurry down to my friendly neighborhood medical marijuana purveyor first thing tomorrow and get some red vein Borneo. Steve, good advice on feeling out the doc's receptiveness. I will proceed with caution.

mudslide
Posts: 36
Joined: Sun Jun 08, 2014 7:23 am

Re: Uh-oh... methadone hassles?

Postby mudslide » Tue May 15, 2018 5:37 am

Reading a bit about kratom -- should I be buying it on line instead of locally to be sure of quality?

Polar Bear
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Re: Uh-oh... methadone hassles?

Postby Polar Bear » Tue May 15, 2018 10:26 am

mudslide - I came to post with regard to how much information you present to your doctor. Steve has covered that in his post :)
I don't know how long your appointment will be, here in the UK we get 10 minutes. This means that if I want to show/suggest something to my GP I highlight it, and know from experience that he will be receptive. However, I only highlight a couple of pertinent points..... exactly as Steve has suggested.
You don't want to overwhelm with too much information, especially as you will be 'playing it by ear' so to speak, guaging how your dr is taking to the fact that you are being proactive.
Fingers crossed that he/she is as willing as mine.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

stjohnh
Posts: 566
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Uh-oh... methadone hassles?

Postby stjohnh » Tue May 15, 2018 1:30 pm

Mudslide, I would get this one.
https://www.socalherbalremedies.com/pro ... -maeng-da/

They never use the word kratom anywhere on their site so don't be put off by that. They call their kratom products tea. This vendor, SoCal Herbal Remedies is quite reliable. Unfortunately they sell out of the red vein Borneo frequently. I would get the one I have listed above, it is supposedly very similar to the red vein Borneo. There are other vendors as well. I would order today. They have priority shipping. I have never purchased any except online. Generally rumor has it that the quality is quite poor if you buy it from a brick-and-mortar retailer.
Blessings,
Holland


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