Frustrated w/ Dr.

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domesticflowergirl
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Frustrated w/ Dr.

Post by domesticflowergirl »

:( I asked my Dr. for a new Perscription ( Generic ) for Lexapro & she gave me the Perscription for Citalopram. Then will cost me $4 instead of $64...then I asked her for a Perscription for Klonopin ( $15 ) to Replace the Mirapex ( $93 ) for 30 day supply. I suggested she go onto this Web.site to read about the success of using the Klonopin. She told me that there was NO Medical "proof" that it works so will NOT give me "anything" other then the Mirapex...I so so UPSET because w/o changing then after the Mirapex is GONE I will have "nothing" to take.
57 yr old Grandma of 5. Crocheting & my Grandchildren. , Reality TV Neopets, , making new friends. Movies, Music & ...4-5 days at the "OCF...Oregon Country Fair" in Veneta, OR .)watching OCF Videos on "You-Tube"

Neco
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Post by Neco »

I'm not well versed on Klonopin, but I'm not really sure it manages RLS as much as it lets your sleep through it.. I could be wrong, but that is the understand I have about it..

I'm sorry you are in this situation however. Have you shown your doctor the Mayo Clinic Algorithm for treating RLS?

http://www.mayoclinicproceedings.com/pd ... 907Crc.pdf

It has many options in there besides Mirapex and Requip. It lists benzodiazepine and opiod medications.. Klonopin is part of the benzodiazepine family.

You may have to consider finding another Doctor if she remains unresponsive to anything though, especially if this is a cost issue

Sojourner
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Post by Sojourner »

d, sorry for the bad dr. experience. I'm sure it was awful. Some doc are more amenable to suggestions than others. But, probably asking them to go look things up on a website would not be taken kindly by most. Did you by any change have a copy of the Mayo Clinic Algorithm with you. Not sure about the context in which Klonopin was discussed and perhaps that was a point of confusion. I may be says what you already know but while Klonopin is used to treat rls it has not been specifically approved for rls like Mirapex and Requip. So, is an "off label" use for rls in that sense. But, it certainly is one that can help alleviate the damage of rls by reducing its collateral damage such as lack of sleep, anxiety, etc. Still, I know even Dr. B would prefer to use other sleep meds rathe than Klonopin. Still, for some, it is what is needed.

Hopefully, I am not reading your post to mean once your current script for Mirapex is use up that you will not get a refill--particularly if it is helping. Or are you just worried that once the Mirapex looses is effectiveness, or somthing like that, that you will not be given some other treatment? I did not read all of your previous posts but is cost the major factor here? Are you satisfied with this particular doc?

Mmm. Gonna have to read your other posts.

Anyway, Argghhhh! What a bad dr. visit. Hopefully, there is room to open up more communication or discussion about treatment options.

Best wishes,

M.


d, did go back and read your previous post and understand the financial ramifications. Unfortunately, most docs, will not use that to guide them in what meds they choose to prescribe particularly if one is of the "off label" nature. Still, other doc might try to take that into consideration. Obviously your didn't, won't, or "hopefully" honestly believes that he cannot in good conscience do that.
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Neco
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Post by Neco »

There is hope.. Whenever my doctor pulls out his book to look at a medication for me, he has always done his best to give me a rough estimate or picked one that looked like it was real cheap (there are $ indicators in the PDR I believe)

domesticflowergirl
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Bad Dr. Experience...

Post by domesticflowergirl »

Well...she is the "Best" Dr. I have ever had. I have an Appt w/ her on Oct 1rst so will chat w/ her somemore about this. The $15 I could come-up w/ alot easier than the $93 that's for sure...LOL
57 yr old Grandma of 5. Crocheting & my Grandchildren. , Reality TV Neopets, , making new friends. Movies, Music & ...4-5 days at the "OCF...Oregon Country Fair" in Veneta, OR .)watching OCF Videos on "You-Tube"

SquirmingSusan
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Post by SquirmingSusan »

What about asking for a prescription for the generic form of Requip? It's called ropinerole, and should cost quite a bit less.
Susan

domesticflowergirl
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Joined: Fri Sep 05, 2008 5:32 am
Location: Sequim,WA

Bad Dr. experience

Post by domesticflowergirl »

:( I asked about the price of that...& was $64 Being Unemployed for 6 weeks & literally NO Income can NOT afford that. I moved from the Oregon Coast to Washington almost 2 yrs ago (HUGE "Mistake"...LOL ) I am going to be moving back there the 1rst of Nov tho. Will be so much easier & faster to get on "Disability" there in Oregon. I have "alot" more Family, friends support there also ( living w/ my youngest Daughter & family here & when they were told this morn i have decided to move back to Oregon...they said that I would be "expected" to pay my Rent & Utilities until the time I move & am NOT to leave "anything" of mine here ) My oldest Daughter & her Husband there in oregon said that i can Live w/ then as long as I NEED to / WANT to...but I will NOT do that "Period". I will hopefully make enough off my Yard-Sale next week & selling ALL of my Furn etc ( keeping ONLY what i can fit into my Explorer ) to rent a TINY 1-room "whatever"...LOL will put things into the smallest Storage Unit if not ...then stay in my Explorer for awhile. As long as I can stay fairly "warm" & get my Medication ...will be OK!
57 yr old Grandma of 5. Crocheting & my Grandchildren. , Reality TV Neopets, , making new friends. Movies, Music & ...4-5 days at the "OCF...Oregon Country Fair" in Veneta, OR .)watching OCF Videos on "You-Tube"

ViewsAskew
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Post by ViewsAskew »

I can sort of see where she is coming from, but she's missing the whole picture IMHO.

Mirapex and Requip are the only two approved medications for RLS. And, they do have the highest rate of working for people of any medications studied.

But, a lot haven't been studied.

Historically, Klonopin was used for treating RLS. All through the 1980's (possibly as early as the 70's), they had no idea what worked. They did find that many people did get relief by using Klonopin.

I think it's important to remember that if it worked really well, they wouldn't have looked for another drug. But, it didn't. It worked so-so. Some patients WERE helped tremendously. It just wasn't a large enough percentage. As Zach noted, some just slept through the RLS movements - it didn't make them go away. Another reason they looked for an alternative was because of the side effects and the higher-than-normal risk of problems with it related to dependence and addiction.

All that said, it DOES work for a certain group of people. If I were a doctor and he or she couldn't pay for what worked, I'd either help find a way to get her the medication (your doctor can help you apply to the drug maker to get it at lower cost), or help find a medication that both worked and the patient could afford.

I don't know what I'd start with - maybe a cheap generic opioid or the generic for Ultram, called tramadol. Maybe with a shorter acting drug in the same class as Klonpin, like Restoril. It works very similarly, but isn't in your system as long, so the side effects are lessened. The potential for dependence and addiction is the same, however. Or, maybe a look at a generic anti-seizure drug.

All of these drugs are listed on the algorithm that was already mentioned. To me, a great doctor would go through the list, mixing and matching until the right one or right combo, based on both price and effectiveness was found.

Maybe if you ask her to do that, she will. Sometimes doctors just don't know what you need from them and so we need to be willing to ask.
Ann - Take what you need, leave the rest

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HeatherB
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Post by HeatherB »

I take 1mg of Klonopin every night 1/2 hour before bed. I have been on Klonopin since June of this year.
Before the Klonopin I had daytime and night time symptoms. I have no symptoms at all now. Last night was 5 weeks straight of no symptoms.
So Klonopin does work for some people.
Or is being symptom free all in my head too? (i'm primary rls) :?:

ViewsAskew
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Post by ViewsAskew »

My first thought is, does it matter? (I mean, let's be practical - you have NO RLS and that is a great thing!)

My second thought is, probably not. It DOES work for some people. Is that 20%? 40%? We're not sure because it's generic and no one is studying it. The doctors who see a lot of patients just know that it wasn't a really high number because a lot of their patients still had problems. And, because it wasn't studied, we don't know why or how it helped. As Zach noted, one possibility is that is simply kept you asleep, but didn't stop the movements, meaning it didn't help you get deep sleep.

I think that Dr Buchfurer's point is that there are other benzos that are shorter acting so they do not cause the drowsiness. Hence, why start with Klonopin when they often work just as frequently, but may not cause the daytime sleepiness that K does for some folks. I think he'd also suggest, based on what he says on the So Cal site and in the two books he has helped author, that there are other sleep aids that don't have nearly the potential for problems, so they'd also be better used at first. But, he never says not to use it at all.
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.

Alan
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Post by Alan »

(slowly, but faster than I should have) pushed the dose up, finally getting good relief at 1mg. After about two weeks things got worse and worse, and I (without calling him) raised the dose to 2mg. I had terrible augmentation lasting about 4-6weeks after I stopped the drug. After this, he was reluctant to give me new meds. Since I was now retired, I was able to sleep in, and was getting adequate hours of sleep, but tried to make him understand that I had 1-2hours of terrible discomfort every night from the restless legs. He actually said: "well, you may just have to put up with the suffering". I relate this because its important to know that sleep specialists often focus too much on the hours of sleep the patient gets, and ignore the quality of life. It is difficult for RLS patients to explain how uncomfortable the restlessness is--even for a patient who is a medical professional. It is hard to make people understand what it is like to dread laying your head on the pillow and turning off the light. It is hard to describe the loneliness of being up, alone, while your spouse, partner, kids, and everyone else sleeps.

I've stayed with my doctor--and I hope given him some understanding of what RLS patients go through. I also urged him to include augmentation in his discussion of the Parkinson's drugs with patients. Perhaps he assumed that as an MD I would know--but he was wrong! Interestingly, my internist, who had RLS during pregnancy, has been a staunch advocate for me.

Alan
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Post by Alan »

Sorry, but the first half of my message somehow got cut off--In it I explained that I am a physician with RLS since childhood, which worsened suddenly when I turned 60, associated with iron deficiency. My sleep specialist started me on Iron and Requip. He did not include augmentation in his informed consent. I...then see the rest above

Sorry for the confusion-Alan

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