Life long suffering

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.
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burkej1h
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Life long suffering

Post by burkej1h »

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Last edited by burkej1h on Thu Feb 26, 2009 5:34 pm, edited 1 time in total.

Neco
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Post by Neco »

Sinemet CR is a controlled release form of sinemet, so that is why it is double the standard dose. However if your have RLS every day, all day long, I would NOT take this medication..

I have no experience with controlled release forms, but most of us here would NOT touch Sinemet with a 10 foot pole, in an environment suit, from inside a plastic bubble 8) :lol:

It's good that he recognized its RLS, but if you are having symptoms every day, he clearly did not understand that, and/or has not kept up on modern research. Practically everyone Sinemet is given to augments, except for a small population, and while I don't know if that changes with Sinemet CR (the theory being controlled release at a lower constant dose, holds off augmentation) I still can not in good concience tell you to take it. If everyone in the world had RLS, that drug would be branded a form of torture.

Dopamine Agonists (Requip or Mirapex) are often the front line drugs for RLS that occurs with great frequency. Neurontin and Lyrica also are used as front/second-line drugs, as well as some benzo's.. Benzo's are more of a knock you out thing, as opposed to treating the symptoms though, but some people do report they improve the severity.

After that it is opiates or bust. Opiates are one of the single most effective treatments, and are highly recommended for difficult cases who experience symptoms all the time, or very frequently. For instance, I have Refractory RLS, which is a term used to describe RLS that never stops, and does not repond to, or is made worse by Dopamine Agonists. I'm a good candidate for controlled release opiates, however I also have a history of substance abuse caused by treating the RLS with traditional short acting opiates (Tylenol #3w/codine, Vicodin, Oxycodone, etc) so I now take Methadone. It's not CR in nature, but it has an incredibly long half-life and a much longer duration of action than typical stuff like Vicodin, etc.. Some others here are on Methadone too or have recently made the switch. It's a last resort kind of thing, but for the most part it works very well.

The Mayo Clinic Algorithm will give you a LOT of answers, so you should read it and do your best to get this neurologist to read it.. I'm not even sure Sinemet is listed in it anymore. If it is, I hope they have a strong passage about the abysmal success rate of the drug..

Here is a link to the PDF. You need Adobe Acrobat Reader to open it, then you can print it out if you wish.

http://www.mayoclinicproceedings.com/co ... l.pdf+html

I think it will answer a lot of your questions about your RLS, and it is also real easy to understand.

Neco
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Post by Neco »

In fact here it is..

COMMENTS
3. Carbidopa/levodopa, 25 mg/100 mg (1/2-1 tablet),
can be used for RLS that occurs intermittently in the
evening, at bedtime, or on waking during the night or RLS
associated with specific activities, such as airplane or
lengthy car rides or theater attendance. Controlled-release
carbidopa/levodopa, 25 mg/100 mg (1 tablet), can be used
alternatively before bed for RLS that awakens the patient
during the night. Even the CR form has a relatively short
duration of action and may not produce sustained efficacy
if RLS persists throughout much of the night. Controlled
trials have shown efficacy of both preparations.7,8 For
maximal absorption, levodopa should not be taken with
high-protein foods.
Problems with levodopa treatment include augmentation
and rebound. Augmentation is defined as a worsening
of RLS symptoms earlier in the day after an evening dose
of medication, including earlier onset of symptoms, increased
intensity of symptoms, or spread of symptoms to
the arms.16 Up to 70% of patients taking levodopa daily will
develop augmentation, and the risk increases with daily
doses of 200 mg or more.17 The risk of augmentation may
be lower with intermittent use, such as fewer than 3 times a
week,
but this has not been established firmly. Patients
should be warned about the phenomenon because taking
additional doses of levodopa results in worsening augmentation.

If augmentation occurs, the drug should be discontinued
and another agent substituted. Rebound, the recurrence
of RLS in the early morning, occurs in 20% to 35% of
patients taking levodopa



I would print out the Mayo in full.. print out that seperate text block I quoted, keeping the bold and italics portions as they are, then staple this sheet to the top sheet of Mayo printout (so its the first thing they see) and highlight the italicized portions. (i.e the world DAILY) with yellow or something that will grab his attention.

Drop it off at the office and tell him you will try anything else BUT this drug. Cause it sounds like your have RLS the majority of the day

ViewsAskew
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Post by ViewsAskew »

I'm not sure, off hand, if it's good or not...I only know about the regular formulations.

Per the regular formulation, unlike Zach, I would touch it, in fact I'd use it....just not in your situation.

I do think it's a great drug when used appropriately. But, that means not taking it more then 3-4 nights every week. It's an inappropriate choice, however, when used every day. That's because of the potential (highly likely) side effect called augmentation.

So, if your RLS is daily, the regular formulation isn't an option. Several years ago, the thought was that a controlled release dopaminergic would be help stop the problem with augmentation. What I don't know is if it applies to this drug or not.

I just looked in the book by Hening, Buchfurer and Lee and they make no distinction between the CR and the regular version in terms of augmentation risk.

That tells me that the doctor is probably not up to speed on current research and doesn't realize that this is not a drug to use with daily RLS.
That, makes me sad in general and concerns me specifically about how he'll work with you...
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.

Sojourner
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Post by Sojourner »

b, First off, welcome to the Board. Glad you found us. Lots of good information here. I can't offer much more with respect to the Sinemet CR issue. To balance things out a bit, I was on a daily regimen of Sinemet for approximately 2 years before stopping due to other side effects other than augmentation. I currently am on Neurontin and some Vicodin as needed. If I had found this Board prior to being prescribed Sinemet I probably would have asked my doc to go in a different direction. Still, I was perhaps lucky with respect to the Sinemet on a daily basis. You are, as we all are or have been, in a bit of an awkward situation with respect to having enough knowledge or access to information which seems contrary to what your doc is prescribing. Becoming knowledgeable about rls is perhaps "job #1" for each of us followed closely by "job #2" which is putting that knowledge to work by advocating for ourselves. Sometime requires a bit of diplomacy, which may or may not work, or sometime just expressing some honest concern or confusion with you doc. Sometime it means looking for another doc. So, take what information you find here (including the Mayo Clinic Algorithm) and try to approach you doc with candor and honesty about you concerns. See where that goes. Many docs are willing to work with their patients and some are even happy to learn. Others are arrogant and should be fired. Anyway, everyone's situation is different i.e. how many docs they have access to, insurance, rls severity etc.

Thing is b, you are someplace in the beginning of your journey--and sometime a very confusing journey at that. Don't get discouraged by differences of opinions and recommendations. Listen, read, and learn as much as you can about rls. And after considering the best information advocate for yourself in the direction with which you feel most comfortable. Despite all that is going on, you actually may be ahead of the learning curve already. Best wishes and good luck. M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

burkej1h
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Thanks

Post by burkej1h »

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Last edited by burkej1h on Thu Feb 26, 2009 5:34 pm, edited 1 time in total.

SquirmingSusan
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Post by SquirmingSusan »

Welcome to the forum. I hope you get some relief.
Susan

burkej1h
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Joined: Wed Feb 04, 2009 5:08 pm

Just got back from the doc

Post by burkej1h »

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Last edited by burkej1h on Thu Feb 26, 2009 5:33 pm, edited 1 time in total.

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woodsie357
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Post by woodsie357 »

wow looks like he was really trying to help you

welcome to the forum.
Someone cares about your sleepless nights

krichwine
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Joined: Tue Nov 14, 2006 7:58 pm
Location: Indiana

Post by krichwine »

Not sure what to do about my situation. I have dealt with this for as long as I can remember. Just learned from my EMG & SER tests that I only have a mild case of neuropathy in my legs to go along with my restless arms & legs. I am on clonazepan 2mgs 2x daily, lyrica 100 mg 3x daily, requip xl 2mgs 3x daily, and trazadone 200 mgs at night. I still can't go to sleep most nights. I have recently been on narcotic painkillers b/c of 2 surgery's within 8 days of each other for a non-related medical issue. I am really iffy about asking my Neuro about narcotics and i really don't think he knows much about the steps to prescribing the medications. The mayo clinic lists narcotics as one of the treatments, and I have been to several dr's and they seem like they are scared to death to prescribe narcotics. I know some are hard to come off of, trust me i am currently trying to come off the pain meds they gave me for surgery.
ANY SUGGESTIONS??? I am in constant misery b/c of this horrible condition.

Thanks for listening, KENT

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woodsie357
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Post by woodsie357 »

my heart goes out to you Krichwine. I don't have any advice to offer, just want you to know I understand what your going through, at least the RLS part of it.

maybe take in a sleep log to your neuro as well as the mayo clinic info.

good luck
Someone cares about your sleepless nights

ViewsAskew
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Post by ViewsAskew »

Kent, it's a tough situation. Each of us has had differing levels of success and has handled it a bit differently.

My doctor IS terrified to give them do me. She does ONLY because my prior doctor did AND because the experts say not to withhold them. She'd never have done it on her own.

My last doctor did, but I went through many docs to get to him. He's no longer in my insurance plan AND he's far away, so I really prefer someone closer and who is on my plan. But, that hasn't been easy.

What's worked best for me is to follow their plans to a point. When they don't work, I'm just dogged - I keep going back and force them to help me. When they don't know what to do, I point out, "Um, I'm not sure, either, but these doctors at the Mayo Clinic suggest this; this is also what the doctors who wrote these books recommend. I'm not sure it's best, but I don't see what other choices we have. If it doesn't work, we'll go from there. If it does, then we'll both know."

Making them a partner in your treatment, to me, if very key. If they don't listen to you, trust you, feel that you are not there to usurp them but that you still have valid input, usually those things bode well.
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.

Sojourner
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Post by Sojourner »

K, I can relate to the lack of sleep issue. I look at all the med you are on that cause most people to become drowsy yet you do not sleep. Weird how that happens. I am one that also does not become drowsy or sleepy with meds that typically cause that to happen. I take vicodin as needed and for me, when I need it, its the kiss of death to get any sleep that night. I guess what I'm saying, is that, for me, narcotics such as vicodin and tramadol (though perhaps technically not a narcotic) increase my insomnia. I guess that is not an uncommon effect and perhaps the opposite of what many people experience. Yet, the vicodin does work very well for my rls/plmd pain when I need it. I'm rambling. But, like Ann said, partner with your doc and discuss and explore all the options. It usually boils down to a quality of life issue in terms of what your willing to accept or not accept. We're all different there. But, if you have a good doc and are supervised well then that's a big plus for you. Best wishes and good luck, my friend. M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

mackjergens
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Post by mackjergens »

Kent,
I suggest you talk with your Dr and give him he info about narcotics being used to treat rls. Then tell him you are willing to give up ALL the other meds he has prescribed for your rls, just to try something like hydrocodone. Explain that IF the narcotic works, how much better it would be for you physically to just be taking one med instead of 3-4 different meds.

Let me say this, if you have gone without sleep for yrs due to rls,please do not expect to take a pill and it cure all. IF you can take a narcotic and it will control the rls, just be happy with that for awhile, because in my opinion it takes your body/mind quite awhile to readjust to being able to lay still at night.

For me I think it was almost a yr before my body began to respond to my being able to rest at night, because for YEARs I walked the floor every night and lived on 2-4 hrs of sleep. Right now I still do not sleep 8 hrs straight , but most nights will sleep around 6 hrs, which is wonderful to me!!
Also for many narcotics will keep your awake, so again, you must allow your body to adjust to the meds, but for me it was so wonderful to just be able to stay in bed and relax.

I now take tramadol(ultram) most nights, only having to take hydro when I have a really bad spell of rls. last week was one of those times, for some reason my rls was really strong last week, so had to take the hydro.

Hope this is helpful
read all you can educate yourself all about rls.
www.rlshelp.org
www.rls.org
www.wemove.org
www.mayoclinic.com most drs seem to read things from mayo Clinic. so print out their list of meds used

Be sure and know the otc meds that are known to make rls worse and the foods that affect some rlser's I keep the med list with me at all times.

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