First Post -- Moving to Opiates

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Stogart
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Joined: Sun Mar 15, 2009 1:23 am
Location: British Columbia

First Post -- Moving to Opiates

Post by Stogart »

Hello all, I got diagnosed with RLS about seven months ago and have been cruising these forums for info for the last while. However, I feel it's time to make my first post. I hope you can help me out.

I have pretty much run the list of medications and so far nothing has helped. I was first given Neurontin, then Mirapex, then Requip, then Sinemet (which I am still taking) and none of them have helped at all. My Dr. told me that Sinemet would be the last thing we would try, before discussing what worked best. I have also been using Klonopin and codeine to help, which have helped to some degree. I am supposed to meet with him again next Tuesday.

Given that codeine has helped the most (especially since I get a considerable amount of pain), my inclination has been to move into opiates. The main problem I have with codeine is that it is too short acting, and over the past while I have developed a degree of tolerance to it. Naturally, I am concerned over the addiction to this type of drug. So my main questions are: What opiate works best for you, what dose do you take, have you needed to increase the dose, and to what would you rate your level of habituation to it (scale of 1-10)?

Thanks a lot! Also I'm sorry for such a long post. I hope you were willing to read it. :)

Sleuth
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Location: New York City

Post by Sleuth »

Hi,

I don't think your posting is long at all. In fact, I believe you have capsulized your experiences with various medications very well.

I wish I could help, but I'm not up to opiates..yet. I fear that will ultimately be the way I go.

I'm very new here myself, but wanted to welcome you though.

I am sure you will find a number of people here who will share their experiences with opiates with you.

Good luck. :D

Dale

ViewsAskew
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Post by ViewsAskew »

Hi Stogart,

Not sure I can answer your questions, but will try in another post. First, I want to ask about your experiences with Mirapex and Requip (dopamine agonists).

It is felt by some in the RLS community that if the dopamine agonist drugs do not help, then the person does not have RLS. I'm not certain that this is true, but the vast majority of us certainly do get help from these drugs, even if we can't take them because of side effects.

Also, it's started to become more apparent over the last few years that some people are getting diagnosed with RLS....who don't have it. Instead, they have neuropathy or something else.

Are you certain it's RLS? The criteria are the following:

1. It's worse in the evening.
2. It's worse when at rest.
3. Moving - walking, stretching, massaging, etc. makes it go away.
4. There is a strong urge to move. This may include pain, but underlying it is that you MUST move.

Does that sound right?
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.

Neco
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Post by Neco »

Especially concerning dopamine agonists, do they not help but NOT make it worse? This is a big distinction.. Requip helped me somewhat, but I could not tolerate the nausea, and it was only 50/50 relief at best.. However when I took my first dose of Mirapex I augmented badly for 24 hours.

Sinemet will produce the same reaction in me, although with Sinemet its easy to keep piling more on for temporary relief, but it becomes a vicious cycle.. About 30% of the population doesn't augment from Sinemet, so maybe you're in that bracket, or if its not making it worse either, then maybe you do have Neuropathy and not RLS at all..

However Neurontin I would have thought would have shown some improvement in your symptoms if it was neuropathy, but maybe that's just a fluke...

Either way, the treatment for both Neuropathy and difficult RLS includes opiates.

As far as what opiate works best.. That depends largely on the person. Addiction is always a concern, and so is tolerance and dependence.. I am a recovering opiate addict - by way of treating my RLS, so I can certainly identify with those fears.

In general, for difficult RLS that presents nearly all day, or at all hours of the day, is best treated with a controlled release opiate.

Options for those are Ultram ER (CR Ultram), Oxycontin (CR Oxycodone) and MS Contin (CR Morphine). Its always best to start on the weakest medication, so you don't overmedicate, whether you are taking short acting or long acting medications.. So you might want to ask about Ultram ER. They come in 100mg tablets released over 12 hours (about 8.3mg/hr I think) and should not even be a controlled substance like other true opiates (Ultram binds to the same receptors but is not technically a 100% opiate)

You should avoid this medication if you have any issues with seizure disorders, are taking anti-depressants, or other drugs which could lower your seizure threshold. I experienced a seizure from mixing with anti-depressants and it totally destroyed my ability to tolerate the drug even in small amounts.

Those 3 are your main controlled release options.. However, as a last resort people often resort to Methadone or Buprinorphine (Subutex). Methadone is a very strong painkiller and has a half-life of up to 72 hours (how long it takes half the dose to be eliminating from your body) but is still technically a short-acting opiate. A few of us here take Methadone and usually arrived there because we had little options left.. In my case I simply could not be trusted with large amounts of short acting opiates and managed to convince my doctor to prescribe it. Thankfully I'm doing a lot better. Buprinorphine is a Methadone alternative, but is an opiate blocker that does have sedating effects, but we have at least one reported case on the Forums of someone who is using it for RLS successfully at a very low dose range. These two drugs are last resorts so PLEASE don't mention them to your doctor unless other short acting or controlled release opiates are not working..

Many people make the mistake of asking for Methadone and are almost always flagged as drug seekers.


Print out the Mayo algorithm, from the link in my signature, and go over it with your doctor. There are many options listed as far as opiates go. Its also important to make sure you have RLS.

FidgetBoy
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Joined: Thu Mar 16, 2006 8:07 pm
Location: Minnesota

Post by FidgetBoy »

I think in addition to what Zach is saying, Stogart, there is also another possibility that I think I ran into with the dopamine agonists. I was unable to get to a dose that may have worked due to the side-effects and horrendous augmentation of symptoms. So when doctors tell me I don't have RLS because requip/mirapex didn't work-- I get cranky. It's like the whole "if no one hears a tree falling in the woods" proverb.... does RLS only exist if a dopamine agonist takes care of your symptoms?

I think most people on short-acting opiates find themselves "clock-watching" if the pain/RLS continues throughout the day. In the pharmacy-world we call this "see-sawing" or "peak-troughing". You get relief (peak), then start feeling crappy (trough)-- you pop another pill and the pattern repeats itself. The long-acting drugs help tremendously with this AND also blunt the peak effect which reduces the "high" you get with immediate release narcotics. Your concern about needing more narcotic to take care of your symptoms is a real physiologic problem but should not preclude you from getting relief. You just need to find a doctor willing to find the right dose and be willing to increase if you need it.

I'm on oxycontin 10 mg tid now... but started at 5 mg at night. so that's a 6-fold increase in dose. But-- I'm also pretty sure that my RLS is progressively worsening so i'm unclear what is tolerance and what is clinical progression?
Josh

ViewsAskew
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Post by ViewsAskew »

Zach wrote:However Neurontin I would have thought would have shown some improvement in your symptoms if it was neuropathy, but maybe that's just a fluke...


My first thought is that the dosing may be different than for RLS. That means that a week or so on a low dose for RLS might not have been high enough to work. For RLS, the dose would likely be once a day; for neuropathy, it would be 2 to 3 times a day. Maintenance doses for neuropathy can be as high as 3,600 a day....most RLSers never get near that. And, if it was tried for a short period, it's unlikely the dose ever got past 100 or 200 mg.

Also, there there is small fiber neuropathy (which one of our members ended up having...even opioids at RLS doses didn't help her).

Or that it isn't RLS or neuropathy, but something else. If I remember correctly, there are about 4 or 5 diseases listed in the "Differential Diagnosis" category when RLS is mentioned.
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.

Stogart
Posts: 10
Joined: Sun Mar 15, 2009 1:23 am
Location: British Columbia

Post by Stogart »

First off, thank you all for your feedback.

Second, I will briefly describe my experiences with each medication I've taken. Also, I'd like to mention that I have been to a neurologist and was checked for signs of neuropathy. However, he concluded that it was indeed RLS and I experience all the typical associations of needing to move and worsening in the evening and relief by movement.

Neurontin: Dosed 300mg three times a day. Was told to come back if there was no improvement in 10 days. It did nothing to improve my symptoms and after 12 days went back to the doctor. It did make me feel really dopey and hard to concentrate.

Mirapex: Dosed .25mg before bed. At first it made me really sleepy which helped, but after a few days side effects kicked in and things got a lot worse. I would only be able to sleep for about two hours a night and I'd wake up in a cold sweat and often panic. I also had a lot of nausea, some blurred vision and confusion with no affect on my RLS.

Requip: (On direction of the neurologist) Dosed .25 three times a day. I found that dosing three times a day made my symptoms a lot worse. I told my pharmacist (doctor and neurologist were unreachable) and he recommended trying .5 at bed time. This made tings no better, but no worse than normal. I went back and told him again, and he suggested experimenting with the dose and time of day to see if I could find something that worked--I didn't.

Sinemet: Dosing 25/100 before bed with food. Initially caused nausea and depression, but they have lessened since I began the medication. I have had no improvement or worsening of symptoms and have been on it for almost a month.

I feel I should also mention that my RLS is active during the daytime. By noon I it starts to bug me and by two in the afternoon it starts to hurt. In the evening it is often extremely painful and it is very hard to sit still.

Any new info/ feed back would be much appreciated, thanks again.

Neco
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Post by Neco »

Only thing I can add, is to reitterate to print out the Mayo Algorithm, and the post you just made outlining your experiences..

Go over both of them with the doctor and point out that the algorithm indicates you should move on to opiates next, and because your have symptoms the majority of the day, you think a time released medication would work best.

The algorithm clearly states after failing 2 dopamine agonists (Requip, Mirapex, and I dunno if Sinemet is a DA or not?), and trying Neurontin, etc.. Opiates are the next logical step and should NOT be withheld from appropriate patients.

Also, if he clams up about it, gently remind him that your symptoms leave you in pain, and (supposing here, but probably true) over the counter pain medications do nothing for the pain at all.

Sojourner
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Post by Sojourner »

S, Lots of good advice in previous posts and I'm not sure I can add more other than personal experience.

Foremost, welcome to the Board and our rls family.

Like you I have tried all the meds you have mentioned. For the last two years, until recently, I have had good success with a combination of Neurontin (1800 mg) and Vicodin as needed. I tried the Ultram and Codeine
and neither were helpful in the long run. A "combo" works best for me. I have chronic insomnia even when my rls/plmd is relatively controlled. I can state, however, that, for me, the narcotics simply add to my sleeplessness--as one of their side effects. Even at 1800 mg of neurontin I experience no drowsiness. Anyway, I think you are on the right track and hopefully you and your doc will come up with something that will be effectiove. Best wishes, M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

ViewsAskew
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Post by ViewsAskew »

Zach wrote:
The algorithm clearly states after failing 2 dopamine agonists (Requip, Mirapex, and I dunno if Sinemet is a DA or not?), and trying Neurontin, etc.. Opiates are the next logical step and should NOT be withheld from appropriate patients.


Sinemet is not technically a dopamine agonsist, but it's a dopaminergic. I think the algorithm considers them them in the same category in the sense that all cause augmentation.

I've tried many approaches. To date, when I'm with a doctor I don't know, the best approach I've found is, "help me, I don't seem to have options, I need you." This cues them that they are important to you and that you really need help.

After that, I can say, "Because I've been so miserable and haven't slept for X time, I've taken to being a bit of a geek regarding RLS." This tells them that you're not being a difficult patient know-it-all, but have had reason to do all your research.

Next, while handing them two or three small pieces of info, "This is what I've found that seems more appropriate. Here is the Mayo Clinic algorithm, an email from Dr Buchfurer, and a list of Pub med research that seems to relate." Don't mention the internet.

Again, confirm you're not in charge, "I'm not a doctor, but this made a lot of sense to me and seems to speak to what I'm experiencing."

Last, again show him or her that you are not trying to take charge, "What do you think the next best step is?"

You'll get a pretty good idea at that point regarding what they want to do.
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.

mackjergens
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Post by mackjergens »

i have been taking pain meds for my rls for over 10yrsl
started out taking 75/650 hydrocodone, for a couple yrs then ask if i could try ultram (tramdol) .50mg . That also stops the creepy crawelies, (I dont have pain with my rls, just the creepies) and both of these meds control my rls. I do not feel addicted any in anyway to these meds, most of the time, I will take ultram(tramdol) each night after supper. only use the hydrocodone when the rls is really alot stronger on some nights, I only recieve 30 hydrocodones per month, but 90 tramdol per month. I have never felt like i just had to have either one, some nights I will forget to take my meds and feel nothing till the rls kicks in to remind me that I didnt take meds. because I will have rls every night, and have had it every night for well ove 30 yrs.

I do not consider getting addicted I just feel its something I have to take, just like my other meds and without them my quality of life is not good1

ViewsAskew
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Post by ViewsAskew »

Stogart, you mentioned being worried about addiction....

Here's my two cents about it.

Addiction is when we have to, must, cannot do without, have to have it right now and we'll lie, cheat and steal to get it. We lie to ourselves, our families, our doctors. We might eventually come clean and stop lying, but we still MUST have it.

Statistically, about 6-7% of the population has trouble with addition. The rest of us do not. If you've had addiction issues in the past, you might want to be careful about how you approach using narcotics. If you haven't, you've less of a likelihood, though it's still possible, just not that likely.

If you start noticing you want more of the drug, you're taking it more than you need to, that you really like the feeling and you want it again....then immediately contact the doctor and say, hey, we need to change this up. Tell your family to help watch for it, if you're worried.

The most likely thing that will happen is that you will become dependent on it physically. Physical dependence is different, though nothing to sneeze at. If you need to stop the medication, you can experience mild to horrific withdrawal symptoms, depending on you, the drug, how long, how much, if another drug is available to minimize symptoms, etc.

Many of us balance our need for a life with the knowledge that we may well pay a price down the line with withdrawal. I have chosen to be able to work, have relationships with my husband and family, to be able to be close to friends knowing that eventually something is likely to happen and I'll have to stop it - that could be because of a cure (wishful thinking!), another drug will work better and cause less side effects, this one stops working, etc. I also know that I may have a rough time for a few weeks, to many weeks.

If there was an option that would allow me to have my life and didn't require me potentially having to go through withdrawal, I'd do it in a heartbeat. But, there isn't.

Eventually we just have to decide what we value.
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.

Stogart
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Joined: Sun Mar 15, 2009 1:23 am
Location: British Columbia

Post by Stogart »

Thanks again for all the feedback! It has been very informative. I am meeting with my doctor again tomorrow and I will be sure to keep in mind all the advice you've given me.

Here's to hoping for the best. :)

Johnny2
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Joined: Sun Jan 18, 2009 7:01 am
Location: michigan

Post by Johnny2 »

sorry if I am I'm jumping in here a little late, but if I am reading
correctly it sounds like you need around the clock therapy, my case was a little mismanaged from the start with the opiates, my dr did not want to write a script for methadone (he never had before) so we started with norco, then ms contin all the way up to 100mg tid, then oxycontin up to 80mg tid with norco in between (I think that would kill most people)
at anyrate the problem was I have a speedy metabolism so I was only getting 5hrs max relief out of the extended release drugs (oxy and ms contin) so we kept upping the dose then when things were not working again my dr asked me if I would try methadone (I said sure I suggested that a couple years ago) he replied "that was before we got you hooked on these outrageous amounts of meds" . I now take oxy and methadone
because I cant tolerate methadone at a high enough dose to take care of my symptoms, but I take a small dose which covers perfectly between my oxycontin. to make my long story short if you are concerned about
addiction I would ask for a low dose of methadone maybe 2.5mg bid
and see how that works, methadone will give you no "high" feeling, which should lessen the chance of addiction.
it has a really long half life which should eliminate peaks and valleys
as well as the need to increase doses, I truly believe it should be a frontline tool for rls that requires around the clock therapy, not a last resort.
Is it nap time yet ?

Johnny2
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Joined: Sun Jan 18, 2009 7:01 am
Location: michigan

Post by Johnny2 »

oops! I forgot to note in my case just adding a tiny amount of methadone we were able to cut my oxy dose by 200% and I"m getting 95% relief.
for what it is worth I'm just not sure that I agree with using it as a absolute last resort, but these are huge choices we have to make (or are made for us to a point). Hopefully what ever you and your dr come up with is chosen to provide the best possible care for you and not with
concern of the fda or stigma some of our meds carry.
Is it nap time yet ?

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