Deciding when it is time to start doing drug therapy

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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Eweforia
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Deciding when it is time to start doing drug therapy

Postby Eweforia » Mon Aug 29, 2011 10:10 pm

New to the group but have read a lot. I have had RLS for about 10 years but it is very cyclic. There is always a low-level sensation all night and the twitching wakes me up on and off all night, but generally if I can get to sleep, it doesn't affect my night too much (although my sleep isn't particularly restful). BUT...for about 3-4 nights every 6 weeks, quality of sleep is seriously compromised. I can only sleep from about 3-6AM. I can find no trigger for the worsening symptoms during this cycle. I am post-menopausal.

I've been self-medicating for the past couple of years by swigging 4 oz of rum when I go to bed. It doesn't prevent the RLS but helps me sleep through most of it. (Being tipsy for 2AM trips to the bathroom can be tricky!) It doesn't help on those 3-4 bad nights, though. But the flip side is that I can go for several weeks without the rum.

I avoid drugs of all types and am not eager to start the RLS drug roller coaster. The nearest neurologist who has any experience treating RLS is 1.5 hours away and it took 3 weeks to get his assistant to respond to a simple question concerning the free samples of Mirapex ER that he gave me (at $300/month!). He has now written a prescription for regular Mirapex 1.5mg x 3. I am seriously reluctant to start this, especially since the doctor isn't too responsive. I fear starting a drug that may cause my symptoms to get worse, and augmentation seems to be inevitable.

I think that other than those 3-4 days during my RLS cycle, my RLS is manageable without drugs. I'm wondering if it might be better to take the occasional opioid during my cycle rather than a for-the-rest-of-my-life drug regimen that will probably make things a lot worse. Do any of you have an opinion on this? What can I likely expect if I ask my doctor about such opioid use (or rather, ask his assistant)?

(Sorry for such a long post.)

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fraujoolie
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Postby fraujoolie » Tue Aug 30, 2011 3:07 am

Most honestly? If you're already so far away from a doc, and that one doesn't even seem decent...
do not pass go.
do not collect $200.
go directly to Dr. Buchfuhrer in Los Angeles.

Why deal with all the horsefeathers of these other docs? Go to the horse himself. :) Wait, he's not a horse, he's a great doc. He is the definitive guru on RLS.

I don't know if you can take an occasional med, or not. A good question for the others, and for Dr. B! It's worth trying, if you ask me. If it works for you, and you feel good, that's great. And that's sort of Dr. B's philosophy towards meds, too. Take as little as necessary to find relief.

I have never been able to just take RLS meds occasionally, though. As a chronic disease that I have everyday, and it's pretty bad for me, I have to treat it daily. I augmented on Mirapex, so went to Methadone. I have been on a low dose for about two years now (and it's cheaper than rum!). No problems whatsoever healthwise on it. I even had a normal, healthy pregnancy on Methadone. It's such a small dose, I think one's body is able to use it quite efficiently without any sort of "dopiness."

Hm, the rum seems problematic, though. Even though you're sleeping through the symptoms, you are having them, and probably more! Alcohol makes RLS worse! You are probably twitching so lightly, it's just affecting your REM sleep (the deep, restorative sleep), and not waking you up. When my symptoms first started in my early 20s, they were much like yours. Finally, when I went to the doc for Mirapex, the very next morning, it was completely unlike anything I had ever felt before. It was like rainbows and unicorns flying outside my window. I had never felt so rested in all my life. I thought it was a miracle drug, except it was super expensive, and ended up not working in the end. Oh well. My docs (in Detroit at the time) were unable to help. Their solution was "More Mirapex!" Had I only known of/seen Dr. Buchfuhrer in the first place, I would've saved myself about 10 years of misery.

So that's my opinion --- make an appointment with Dr. B. Send me a PM if you're coming out --- I live in the area now and have appointed myself the unofficial rls.org welcome wagon.
Julie

ViewsAskew
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Postby ViewsAskew » Tue Aug 30, 2011 4:21 am

Given that it's only occasional that you need it, your needs are different from people who need it daily.

My guess is that you'd prefer something quick acting and that you can take when you can tell the RLS/WED is not going away.

Mirapex takes about 90 minutes to work; Requip takes at least 60.

Sinemet, a drug that should never be taken regularly, works in 15-30 minutes. In "The Clinical Management of Restless Legs Syndrome," they list several drugs as appropriate for infrequent bedtime use. One is this.

Another option listed is opioids. They also have a relatively quick onset.

They also list sedative hypnotics.

Many of us have not found doctors that understand RLS/WED very well, including neurologists. After trying several, I went back to my GP who worked with me. I took in things like the book I mentioned and gave it to him. He used it and also consulted with RLS expert Dr Buchfuhrer.

Of course, visiting Fraujoolie might be much more fun :-).
Ann - Take what you need, leave the rest

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Postby Chipmunk » Wed Aug 31, 2011 5:26 am

Alcohol may keep you unconscious but it is likely worsening the RLS/WED. Also, 1.5 mgs of Mirapex sounds high for an initial dose. I started on 0.125 mg with instructions to add another 0.125 mgs every 3-5 days, until I worked up to an effective dose.
Tracy

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Eweforia
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Postby Eweforia » Wed Aug 31, 2011 3:06 pm

Thanks to everyone for such helpful information. I've ordered the "Clinical Management of RLS" book. In the meantime, I have a question for ViewsAskew: I looked up Sinamet and briefly, "It may take several weeks to a few months to notice benefit from use because the dose is carefully adjusted over time." Can you point me to information supporting the argument that Sinamet works effectively as an occasional med?

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Postby ViewsAskew » Wed Aug 31, 2011 8:23 pm

Maybe that is true for Parkinson's. The only book reference I know of for sure the shows Sinemet works occasionally is the book you will get shortly. I imagine there are others. Did you search on RLS and Sinemet? You might get different search results that way.

It took a couple searches, but searching on RLS Sinemet occasional use, netted the following:

http://www.health.harvard.edu/newsweek/ ... ndrome.htm
Ann - Take what you need, leave the rest



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Eweforia
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Postby Eweforia » Wed Aug 31, 2011 8:51 pm

Thanks, Ann. I'm going to dump the neurologist and go back to my GP. She has no experience with RLS so if she is willing, I want to help her learn. Resources and links to authoritative references will help validate the information I provide. I had hoped that my physician would be guiding this effort, but I think my only option is to guide the physician. It doesn't increase my confidence level, though, that I'll come through this better off than when I started.

I can't afford a trip to Dr. Buchfuhrer's office, so I'll get some of his books. Fraujoolie, can you recommend the one I should read first?

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Postby ViewsAskew » Wed Aug 31, 2011 10:01 pm

Even without a trip to Dr B's office, you may be able to get the benefit of his knowledge and help your doctor learn the best approach. He often answers pleas of help through email and will work with a doctor, even when you're not a patient! He did that for me with my GP. I believe it is somno@verizon.net, but hope someone else will verify.

Many years ago, I emailed him after my neuro really screwed things up - putting me in the position that you're trying to avoid. Dr B wrote back explaining what I should do. I took in research, as you are doing, a couple books, and Dr B's email. My doctor read everything and agreed to help me, following Dr B's advice. To my knowledge, he did not call him, but recently someone else posted the Dr B talked to his/her doctor even though he/she had never been a patient.

He later became my doctor and has continued to amaze me with his helpfulness and concern for those of us with RLS. Not to mention his dedication to the field.

He's a very unique doctor.

While it won't hurt you to get Dr Buchfuhrer's other book, you probably don't need anything except the one you have.

http://www.amazon.com/Restless-Legs-Syn ... 1932603573
Ann - Take what you need, leave the rest



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sleepdancer
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Dr. B

Postby sleepdancer » Thu Sep 01, 2011 7:06 am

I just realized that I'm visiting in the same town where Dr. B. is! Wow. I really needed him a few years sooner. Julie, I get the idea he's "the man" for pharmaceutical management of RLS/WED. Do you know if he has any experience treating RLS/PLMD with a TENS Unit? By trial and error I'm doing pretty good with it, but have to wonder if it could be optimized even further.

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Eweforia
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Follow-up on my older post

Postby Eweforia » Wed Nov 23, 2011 3:42 am

I wanted to follow up my 8/31/11 posting with a thank you to fraujoolie and ViewsAskew. I know that you are generous with your advice and probably don't hear back from the majority of people you help, so I wanted to share some really positive feedback.

As a result of your advice, I purchased and read "The Clinical Management of Restless Legs Syndrome" and read all of the information at the Southern California RLS Support Group's Treatment Page at http://rlshelp.org/rlsrx.htm . Then I gave both to my primary care physician and she agreed to read them and to give me her opinion as to which drug I should take.

She prescribed .25 mg Alprazolam (the generic form of Xanax), which is one of the benzodiazepines. It works perfectly and I am sleeping soundly (well, relatively soundly) for the first time in several years. I seriously did not want to start my drug treatments with one of the dopamine agonists (Requip or Mirapex) because it seemed to me that it would be like using a sledge hammer to drive in a thumbtack. I worried that when the thumbtack grew to need a sledge hammer, I'd already have exhausted all of the bigger hammers. So I was really pleased that my primary care physician started with the small hammers and that this rather mild (and VERY inexpensive) drug could be so effective. I hope it continues to work.

ViewsAskew, you helped me decide to go back to my primary care physician and get her up to speed on RLS. That was the key to everything. Thank you so much.

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Postby Polar Bear » Wed Nov 23, 2011 8:57 am

I am so glad that you had a positive result with the treatment from your GP, and wonderful that your GP is willing to cooperate and follow Dr B's lead.
Betty
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Postby ViewsAskew » Wed Nov 23, 2011 2:09 pm

So glad it's working and that we were helpful. It is very nice to hear.

Not sure how you're taking the drugs, but if the WED/RLS isn't bothersome every night, taking the drugs 3-4 nights a week can help avoid the potential dependence issues.
Ann - Take what you need, leave the rest



Managing Your RLS



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Neco
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Postby Neco » Wed Nov 23, 2011 5:59 pm

Glad that the Xanax is working for you.

Just be careful to only take it when you truly need it, and only as large a dose as you actually need (within your prescribed range).

Benzos come with their own problems, especially if you find yourself cut off for some reason, or have to start reducing your dose to stop them.

But overall, if it works well for you, then that is all that matters.

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Eweforia
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Postby Eweforia » Wed Nov 23, 2011 6:22 pm

My doctor prescribed the low dose of .25 mg every night. Prior to taking Xanax, the RLS was breaking through every night. It had pretty much ceased to be an occasional occurrence and was regular.

I recognize the danger of dependence, but I can't really see much difference between becoming dependent on Xanax versus Requip or Mirapex or any of the other RLS treatments. Perhaps some of you have worked with this drug before and can advise. Right now, I am sometimes experiencing RLS sensations about an hour before bed. I take the Xanax at bedtime and by the time I've finished reading a few pages of my book, the symptoms are gone and I get a restful night with zero lingering aftereffects the next morning. I can certainly experiment with taking Xanax only when I experience the sensations before bedtime. I've been enjoying the good sleep so much that I haven't been willing to experiment up to now.

My concern is, like with the other treatments, my body will develop tolerance and require higher doses over time. I just can't see any way to avoid that regardless of what drug I take. Xanax seemed to be the least risky over the long-term. Perhaps my doctor and I are wrong.

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Postby ViewsAskew » Wed Nov 23, 2011 9:28 pm

I think the difference, to me, is that it never takes long to stop Mirapex or Requip.

Stopping Xanax can take many months if you are one of the people who becomes dependent.

I took a small does of a benzo for a few months - maybe 5-6 months? It took me 7 months or so to stop it. I was ill during the whole 7 months and lost 30 pounds.

Conversely, stopping Mirapex was 3 weeks of increased symptoms, but no physical withdrawal. And, if I'd stopped Mirapex at the first sign of any increase in symptoms, I wouldn't have had that issue.

But, not everyone gets dependent. That's the problem.

Honestly, if I could medicate 3-4 nights a week and no more, I'd choose Sinemet. It's blazingly fast and causes few problems IF you take it infrequently and at low doses. My next choice would be Mirapex. As with Sinemet, if not used daily, the chances of augmentation are extremely low.

While I dislike the side effects and wish I didn't have to take anything, I currently alternate Mirapex and an opioid. It has worked the best of anything I've tried. I have no augmentation issues, I have no dependency problems with the opioids. Seems a very rational approach for people who will likely need daily treatment for the rest of their lives.
Ann - Take what you need, leave the rest



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