Refractory RLS 24/7, should methadone be a last resort?

Johnny2 · Post by **Johnny2** » Fri Jun 19, 2009 7:00 am

Kind of a conversation continuation from another thread.
Should methadone be an absolute last resort when dealing with refractory
rls or 24/7 symptoms? I say no. Do I think it should be handed out like tic-tacs when a couple of vicoden could do the job? No. But vicoden alone
really is not a good choice for a 24/7 issue.
If someone has failed 2 DAs, has had an improvement with a short acting opiate I believe methadone should considered a viable option without reservation,on par with, if not before the long acting opiates.
With each and every treatment regimen for this disease being custom,
there is no right or wrong one to start with as i see it , only options for trial. After failing probably 25 combinations of meds, one doctor had me eating the family size bottle of vicoden every month(this was prior to educating myself) new insurance left me with a new doctor, who when he observed my records from the prev. doctor he prepared me to expect bad things about my liver when blood test results arrive. Thankfully results were surprisingly good.He stated he was shocked by both my prior prescription and no harm was done yet. He prescribed norco (to lower the tylenol intake) while doing some research on RLS.Next visit we talked about switching to the long acting drugs and trying lyrica(it was new at the time) I mentioned methadone as we looked at the algorithm, worried about raising the proverbial red flag due to its use for addicts, RLS would seem an off label use (shouldn't be as it is a pain med-but who am I to judge) he start me on oxycontin,unfortunately for me I seem to metabolize these to fast, leaving me with only 5hrs of relief, they can only be written for every 8hrs, so we kept upping my dose, switched to ms contin and did the same thing then we lowered the dose a little and added im morphine for breakthrough, then stuck in this cycle at a dose that would rival most cancer patients, we would switch from oxy to ms every 3 months to help preventing it from getting further out of control. After a couple years of this, while on ms contin I started to get violent plm s (bounce the wife out of bed plm s), we did the normal switch to oxy, oh no! still not good. Well after some help here I asked to drop paxil. It worked to stop the violent plm s, but still only 5hrs relief out oxy/ms my doctor says "why don't we try mathadone"? I laughed. While titrating I suffered to much fatigue before getting to a theraputic dose, however by just adding a tiny dose of methadone I was able to lower my oxycontin dose to fraction of what I was taking, no more 3month switch and feeling better than I have in a long time. I just cannot help thinking had we gone to methadone sooner it would have saved me a couple of years of hell. That's why I feel it should be a choice on par with the long acting drugs, not a last resort.

Neco · Post by **Neco** » Fri Jun 19, 2009 1:59 pm

The technical merrits of this argument are valid for the most part, however we need to take in a broader scope of appreciation when it comes to Methadone.

This is mostly about politics, and those politics have shaped my viewpoints somewhat.

In order for me personally to recommend Methadone as anything but a LAST resort, for any kind of RLS, several things need to happen.

The country needs to wake up, and stop all this anti-methadone hysteria about overdose deaths, that have nothing to do with the drug itself. Doctors need to be educated on proper prescribing, and need to be TOLD that patients seeking Methadone for pain are NOT drug seekers and sanctioned severely if they ever mismanage a situation like this.

Politicians need to stop catering to these Methadone witch hunts as well. And the general public needs to be educated about it.

And at the end of the day, I do not believe in overkill when it comes to medication.. You have to realize your experience is a unique one.. You have a fast metabolism, I know what that is like myself and it helped fuel my addiction, but the majority of people out there won't have this problem, and the statistics for prescription painkiller abuse as a whole are rather low when weighed against the population of the country.

Also there are several things you need to understand about the risks of Methadone. There are side effects such as extreme fatigue and sleepiness that can hit just about anyone.. There is a rare risk of sudden cardiac death, and things like this only get used against the drug, especially by groups who feel it should not be given to anyone. That just makes the whole situation worse in my eyes.

Also, I can't condone giving someone a treatment that might possibly kill them - even if its a slim chance, when there is a suitable ALTERNATIVE medication available that may work for them..

We really just have a fundamental disagreement here and it won't be resolved because its based on our personal experiences and interpretations of ethics and politics.

The majority of people may get along well with MS Contin or Oxycontin, and in that case Methadone is not needed. At this forum we don't represent the average population and sometimes its hard not to form ideas based on what is discussed here, but it can lead to a statistically skewed point of view when you forget we are a small and unique community.

Also, CR painkillers are easier to taper off of than Methadone. I don't know if you've ever had the misfortune of being in withdrawal from Methadone but I and one or two others here can tell you it is NOT a pleasant experience, and it is one of the longest withdrawals to go through out of all the opiates, legal or street. That is one more reason not to just jump out and give it to someone from the start, especially if for some reason it doesn't work for them, or side effects eliminate it as an option.

I can understand your passion and support for Methadone, and I share that with anyone as much as the next person, but I have also dealt with an engaged all sides of the Methadone ban-war, and frankly you don't want doctors to just hand this stuff out even close to remotely routinely, even if its for legitimate cases, because once someone gets a hold of rising overdose figures as a result, it just increases to pressure to ban it.

Nobody should be denied methadone if they need it. But caution is warranted at a time in our country where anything can be a target and the public is more or less ignorant of whats in their own front yard, much less qualified to decide what others can and can't be allowed to have.

cornelia · Post by **cornelia** » Fri Jun 19, 2009 8:28 pm

I don't really want to disturb this conversation Johnny, but I find it interesting to read that during several years you switched every 3 months from MsContin to OxyContin when tolerance occurred. We have had a discussion before about this when we wondered if it would work to change from one opiate to another rather than up the dose. Dr B says no, he can't see it working for RLS, but apparently it worked for you. Hmmm, promising.

Corrie

Johnny2 · Post by **Johnny2** » Sat Jun 20, 2009 4:11 pm

It absolutely did work for me! though talking with some pain management specialists my doctor found this to be a valid option to try, another interesting one, if you are not on a long acting opiate, but taking vicoden or somthing where you are not taking enough to kill a horse is Darvon/propoxephene has a very incomplete crossover, so a swap to that
for a few weeks has a strong potential to help get you back on track with regard to tolerence.
Also this was no interuption, we just started to takeover another thread
with this conversation so I just moved it over here, any and all comments are welcome, I just find everyones views on methadone interesting as
the only universal thing I have found is everyone that has an opinion about methadone is very passionate about it.

tunesmith · Post by **tunesmith** » Sat Jun 20, 2009 5:38 pm

My doctor won't prescribe methadone for the simple reason that, in his experience, it changes the patient's mental capacity and outlook. In other words, in his opinion methadone is not good for the mind.

Perhaps those on long-term methadone therapy would like to comment on this? Have they noticed any perceptible changes in their own thinking and or/creative capacities/capabilities? Have their loved-ones noticed changes in their thinking that can be linked to beginning their methadone therapy?

Neco · Post by **Neco** » Sat Jun 20, 2009 8:52 pm

Sounds like your doctor is possibly and idiot, or watches a lot of "House M.D". Their methadone episode was terrible and proceeded to exactly perpetuate this myth that Methadone makes you stupider or whatever.

That is absolutely FALSE as far as I have ever seen in my research. I have been on Methadone for close to a full year now and my mental faculties have not diminished to any certainty of a degree.

There are side effects like any drug, such as some people can't take it because it just makes them excessively tired, now being tired all the time would diminish your mental faculties - but NOT permanently, and certainly it does NOT do this to all Methadone patients or no one would be taking the stuff.

Many of us here take Methadone and we live quite normal lives, have jobs, and function just like everyone else. Some do have problems with excessive tiredness and deal with it by reducing their Methadone dose and supplementing it with another opiate.

If I were you I would demand to know what proof he has that Methadone does what he claims to people, and that the change is permanent (as he seems to indicate with the words you quoted).

Also I would not recommend Darvon/propoxephene under any circumstances. That stuff is truly dangerous, especially for RLS patients when more often than not; the amount of medication needed to afford reasonable relief far exceeds the reasonable safety limits of the side effects it can cause.. Propoxephene in particular is a very strong CNS depressant and can seriously affect your breathing. If you have RLS mild enough to be treated with Propoxephene then you are simply better off taking Ultram, Codeine, or Vicodin. Because they would likely give you the same, if not better relief and are much safer.

Some people actually wonder why they even manufacture it anymore when there are so many better alternatives.

Post by **ViewsAskew** » Sat Jun 20, 2009 11:42 pm

tunesmith wrote:My doctor won't prescribe methadone for the simple reason that, in his experience, it changes the patient's mental capacity and outlook. In other words, in his opinion methadone is not good for the mind.

Perhaps those on long-term methadone therapy would like to comment on this? Have they noticed any perceptible changes in their own thinking and or/creative capacities/capabilities? Have their loved-ones noticed changes in their thinking that can be linked to beginning their methadone therapy?

Tunesmith, I can only speak for myself in regard to this. My mental capacity is that same on Methadone as it was before, often better, sometimes as bad as before. It was diminished by the lack of effing sleep for 15 years, and it continues to be affected when I miss sleep.

When I have a bad spell, as I am having now (hormones, I assume), my mental capacity nose-dives. Right now I can't think of words, I forget what I'm saying or doing, etc. But, my Methadone dose hasn't changed at all, just the sleep. I have had nasty RLS for a few weeks and am not sleeping. Today my capacity is slightly better because I actually slept last night and didn't have RLS throughout my sleep.

I don't take the drug multiple times a day, though, so not sure how that affects people. But, no, no mental capacity problems that weren't present BEFORE I started the drug.

That doesn't mean that I don't think it can't happen. This is our brain chemistry we're playing with. This isn't benign! It has effects that may or may not be tolerable for each of us. But, it's a bit paternalistic, in my view, of the doc to assume that this will happen to every patient (I don't think there are studies to back this up, but I haven't looked for them) and to assume that not using it is better than the quality of life they might get if they took it. It's up to the patient to decide if there is a decline and if they can live with it.

tunesmith · Post by **tunesmith** » Sun Jun 21, 2009 1:47 am

"Sounds like your doctor is possibly and idiot, or watches a lot of "House M.D"

Is this necessary? Actually, he's a very good GP and has worked with me extensively and compassionately to relieve my RLS symptoms. I appreciate his concern because, as we all know, methadone is tough to quit. I would hate to discover it was changing my personality and then have to go through the difficulty of quitting it.

Othewise, thanks for your comments on this.

Neco · Post by **Neco** » Sun Jun 21, 2009 2:41 pm

I apologize,

I am very defense of opiates for RLS and Methadone in particular. Methadone just gets so much bad press and is so misunderstood within the medical community itself.

But I don't know your doctor, so that's not fair. I just get so sick of reading posts from people whose doctors says, quite frankly, the stupidest things about RLS and the medications we use to treat them.

Susie · Post by **Susie** » Mon Jun 22, 2009 10:15 am

Ann....you deserve some sympathy as you go through this rough time.....

You are always encouraging others, so here is some for you, which you already know, but sometimes helps to have someone else say back to us.

Hang in there girl....you have been here before and made it through....so just stick it out as best you can until relief comes ! ! And I pray that will be soon !

(That works for me ....sometimes, anyhow !@#$%^&)

Post by **ViewsAskew** » Mon Jun 22, 2009 11:42 am

Susie wrote:Ann....you deserve some sympathy as you go through this rough time.....

You are always encouraging others, so here is some for you, which you already know, but sometimes helps to have someone else say back to us.

Hang in there girl....you have been here before and made it through....so just stick it out as best you can until relief comes ! ! And I pray that will be soon !

(That works for me ....sometimes, anyhow !@#$%^&)

Thank you, Susie. It's 6:30 and I'm still awake....and still have RLS. It's odd how these times come and go, even when we have "big gun" medications. I have to keep holding out that this is temporary and not a tolerance issue, as my insurance was canceled last week without notice

Not to change the subject, but this is truly amazing. I belong to a union for self-employed people. The sole purpose is to provide insurance to us that companies can get and we can't. It's a group plan. Due to the economy, more people either dropped their insurance because they couldn't afford it or stopped trying to run their own business. Net effect? Our union lost members and we dipped below the minimum that was required by the insurance company to provide our plan. Without notice last week they terminated our plan....as of FEBRUARY! So, the mammogram I just had two days before that? Guess who's now paying out of pocket? Yep, me.

The RLS started before this, so it's not simply stress, but I imagine that's not helping. This is the WRONG time for this to be happening (as if there is a right time, lol).

As you said, it will pass, I've gotten through it before...but, man I'm tired! Gosh, what I'd give to be able to go to sleep right now, mid sentence. I might make some weird characters within the post, but that could be fun!

Thanks again, Susie.

Now, back to the regularly scheduled post.

Neco · Post by **Neco** » Mon Jun 22, 2009 2:31 pm

That's bung... aren't there supposed to be laws against termination without prior notice? I thought they recently passed some law like that or were working on it.

Well... mammogram aside, at least the Methadone is pretty cheap, so I wouldn't worry about it too much.. I know prices differ by pharmacy, I could pay $20 at a Walgreens, but at my local pharmacy its usually $15 or less and rarely goes over that.

Post by **ViewsAskew** » Tue Jun 23, 2009 12:44 am

Yeah, don't get me started on the insurance thing!

[see Ann deleting the paragraphs she just types]

Crap, I got started...

Post by **Polar Bear** » Tue Jun 23, 2009 3:01 am

Yes Ann, I feel we kinda look to you for supprt, and many times you must feel like yelling ' Hey... I got my own problems too, ya know'!!!

Thanks for all you do, and I send you hugs all round.

Post by **ViewsAskew** » Tue Jun 23, 2009 5:07 am

Polar Bear wrote:Yes Ann, I feel we kinda look to you for supprt, and many times you must feel like yelling ' Hey... I got my own problems too, ya know'!!!

Thanks for all you do, and I send you hugs all round.

Thanks, PB - most times helping others helps me forget about my own crap, lol. This week? It's getting a wee bit harder. But, while I'm typing here and thinking about how someone else might be helped, I do forget my own stuff. For that I'm grateful.

I wold guess that most of us probably feel the same way. There are sooooo many caring, helpful people here. We're a lucky group.