8 mg's requip

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richviv
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Re: 8 mg's requip

Postby richviv » Thu Aug 14, 2014 8:58 am

here it where i am at. i decided to wait to see a nuerologist before trying anything else. as far as i know, if there is any help for rls/wed it involves swallowing a pill as can only allowed by a doctor. so either i needed a dr. who knows what to do, or will listen to and then accept ideas i have gotten here or elsewhere. today was my appointment.
if the dr. were to remember me and read what i am about to write, i have no idea if he would think i am accurate in describing what happened. the dr. indicated he was famaliar with the treatment of rls-having many other patients with that diagnosis. i basically 'got out' my 'story', as i have written previously here,-including the idea i 'might ' be on too much requip and that i had tried to stop it with unpleasant results. his response was this-i am not on 'too much', others take this much, i could take up to 22mgs per day-if needed . he knew alot about augmentation and seemed to be uncertain it was important in my situation. he seemed to 'think out loud' throwing different ideas at me-to which i always tried to agree-mostlly differnt types of meds or dosages, but, if i understood him correctly, he finally settled on this-i was to take .5mg clonazepam just before bedtime. this would help me sleep and reduce my need for requip at night so that i could take more requip during the day to deal wiyh my rls symptoms during the day. -noting that this might even reduce my need for requip. he give no instructions on how to use my 8 1mg requip tabs during the day.
i intend to follow his advise-i really do not see that i have another option. i am sure i can not stop the requip 'on my own'. this dr.,though he may change as i get to know him, had a need to be 'the expert' , and help me. i do not think he would be open, for now anyway, to other opinions-no matter the source. i can not 'dr. shop', so...finally,one thing that had worried me about stopping the requip and then going to 1mg, as suggested here, is the requip, in the method prescibed to me ,8 1 mg tabs,, can be taken prn, and almost always, if i start having symptoms, they will reduce, if i take a requip. now i understand that it is possible that i might be 'addicted, , but i also , wonder, if i start taking requip regularly during the day, which i have not been doing, my daytime symptoms will reduce. that is, i am not sure i want to stop or even slow down the requip, even if i wanted to stop i do not think i can, without help and there is none,so....i will continue taking the requip -on a revised schedule-yet to be decided

Polar Bear
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Re: 8 mg's requip

Postby Polar Bear » Thu Aug 14, 2014 11:17 am

So this is a record of your appointment today with the expert Neurologist.
He may have experience in the treatment of WED/RLS, but I doubt he has much success. He is an ideal candidate to take a weekend off and read The Clinical Management of Restless Legs Syndrome (second edition) by Dr B and colleagues.
I am sorry for you and his other WED/RLS patients and feel it is possible his expert ego stands in the way of some WED training/education.
Of course your Requip is way too much.
And clonazepam I is generally a sleeping medication although there may be an anti anxiety and anti convulsant element.
Interesting to know if it will reduce the need for requip at night !!
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: 8 mg's requip

Postby ViewsAskew » Thu Aug 14, 2014 8:32 pm

I understand your difficult situation. It's terrible that he believes that. He is correct in that a Parkinson's patient could take that much. But the evidence is overwhelming that RLS/WED patients should not.

I don't think it's considered doctor shopping to switch. If it is, then I've done it about ten times of the last ten years. In one year, I saw at least 5 different doctors. It's considered doctor shopping if you go in asking for opioids. But, you are not.

If you can share the general area you live in - not the actual city, but maybe the state - we can see if anyone has a doctor in that area.

Another option is to go to this post: viewtopic.php?f=5&t=6532&p=61601#p61601

Print out the papers on augmentation. Choose one or two or them. Highlight the points in them where it says not to take more than 1 mg of ropinerole. Send them to your doctor and ask (nicely), "I am terribly confused. I trust you when you say it's OK to take this much, but these documents all say not to. Could it be that this is new information and that it used to be OK but it isn't anymore?" Or something like that.

Then, see what he says.
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.

richviv
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Joined: Wed Apr 16, 2014 8:55 am

Re: 8 mg's requip

Postby richviv » Fri Aug 15, 2014 11:40 am

i appreciate your interest.
i can only guess how this dr. might respond to information on augmentation. when i brought it up to him, he seemed defensive, worried perhaps, i might know something he did not-he went into a historical explanation on how some drug ,some 40 years ago ,was the first know drug to cause augmentation.i think it is possible, even likely, he has never thought of requip resulting in augmentation.
having just read your linked article, and relating it to my situation, that is, when i stopped the requip, without exaggeration, unless i was walking, my legs moved almost violently-almost 'throwing me off the bed' for 18 hours when i swallowed requip and my legs calmed. i believe there are very few drs. anywhere who would prescibe the meds suggested in this article to help me stop requip. if i knew how long my legs would be totally out of control i might consider trying without any meds, but , my body, i, could not tolerate a situation where i can only rest when my legs are so exhausted they stop moving-if it ever would happen.i do not think any dr. woild believe me.
my insurance is wellmark blue cross/blue shield and my health network is "unity point" in illinois/ not iowa where it is also located, but i am afraid that is a dead end. again,maybe incorrectly, not even places like mayos would 'knock me out' enough until i had a long, expensive histoty with them of different treatments..
though i said i would , i have not written the suggested dr./author, and now i will. maybe he can tell me how long my legs will move after stopping the requip.until something else happens i am addicted to the requip and can not not stop it.
just a possibly interesting facet of my rls. last fall i had a large non cancerous lump removed. while under anesthesia, my legs went crazy. i had to be tied down and a much more powerful anesthesia given. i was sore for several days because of the restraints.

Polar Bear
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Re: 8 mg's requip

Postby Polar Bear » Fri Aug 15, 2014 1:01 pm

There is a publication on the Foundation Web Site covering Surgery for RLS Sufferers. I have it printed out in case I ever need it. Some of the general anaesthetics that are used are to be absolutely avoided by us WED/RLS Sufferers.

As an aside - Last Saturday after a fall I had occasion to go to Emergency at the local hospital. I was in severe pain but took time to grab leaflets and some WED medication in case I was kept overnight or would need surgery. I keep a box folder with all relevant information, medications that I take, the times that I take them, leaflets on augmentation, diagnosis, the whole works. Also I got my husband to laminate my WED/RLS Foundation Membership Card and I keep it in my purse/wallet.

Your surgery was a case where the Foundation leaflet on Surgery would have advised what anaesthetic not to use, and which is best to use.

Also it has been considered that saying we are 'allergic' gets a bit more notice. I reckon allergic is a good word if 'stuff' gives us a bad reaction.

Please do email Dr B and tell him about your medication and your doctor's advice.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: 8 mg's requip

Postby ViewsAskew » Fri Aug 15, 2014 7:32 pm

How far for you to go to Champaign, IL? There is a very good doc there who DOES understand. Dr Picchietti (think I spelled that right).

Dr Silber at Mayo also "gets" it.

I lived in rural IL and went to my PCP with a few articles and an email from Dr B. He listened and gave me the drugs. But, I knew he was open. You are right that is is hard to find.

It will take from 1 to 3 weeks, most likely, to stop the craziness. But, you'll still need a new drug to use once it is all over. As you indicated, most docs just don't have this experience and aren't likely to understand.

The problem is that this is only going to get worse for you, not better, over time. We also do not know if there are long term effects from staying augmented. A few of us believe that there is the possibility that symptoms can be forever worsened by this process - but we have no proof.

Ultimately, it's up to you as to how hard you want to push. I had to find a doctor to help because eventually the augmentation was so bad that I was only sleeping 30 to 90 minutes a day. I couldn't work, function, or even pay my bills. For now, if you are functioning, you may be able to continue as you are. Since I'm on the other side of it, I can say that I'd never want to be augmented again - but I'm not in your shoes.
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.

richviv
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Re: 8 mg's requip

Postby richviv » Sat Aug 16, 2014 10:54 am

I am sorry about all my whining about 'unavailable Drs.' , but..no buts, Attitude is more than 1/2 the solution, so ...I am composing a letter to Dr. B, I am going to copy relevant information regarding augmentation , Dr. B's response (if I get one), and share it with my GP Dr. and possibly the Neurologist , and see what happens. In the mean while, I am going to pet my dog, hug my wife, see my 2 children, buy a new pair of shoes, and turn up the volume on my mp3 player. Thank YOU.

Polar Bear
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Re: 8 mg's requip

Postby Polar Bear » Sat Aug 16, 2014 10:55 pm

We are here so that you can get things off your chest.... vent... rant... We've all done it.

..... as it stands at present, your present treatment is not working.
I hope you feel better now that you have decided to write to Dr B.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: 8 mg's requip

Postby ViewsAskew » Sun Aug 17, 2014 3:48 am

It took me MONTHS to get to the place where I could change the crappy position I was in. None of us wants to hear that our doctors aren't as informed as we need them to be, that we're potentially harming ourselves if we keep following their advice, and that it's unlikely to be easy to find a doc to help.

It takes awhile to sink in and for us to evaluate everything.

Even after I was sure that getting off the DA (pramipexole in my case) was the right option, doing it took more months. All together, I was augmented for about 18 months, about 10 to 12 of that of which I didn't know that's why we had to keep increasing the doses. If that had continued to work, I might not have figured it out for a long time. For me, the increasing doses hit a brick wall of increasing side effects and I couldn't continue any longer. Then I had to figure out what to do.

Finding this board, in 2004, If I remember correctly, was the beginning of the end.

Enjoy the MP3 and the hugs, petting and playing with the kids. Not much better than that....well, a pair of shoes is pretty high on my list, too, lol.
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.

pblackwell
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Re: 8 mg's requip

Postby pblackwell » Tue Sep 16, 2014 4:19 am

I was diagnosed with RLS in 1997 and have tried pretty much everything. Have been on Requip for sometime but now having to take the hydrocodone almost nightly to get any rest. Most nights I just have to get so tired that I fall asleep around 2am but there is no quality of sleep. I am currently on 12 mg Requip XL and my Neurologist just added 4 mg more daily. I have not started taking the additional 4mg because I believe I am suffering from augmentation which my Neurologist said that wasn't a problem with RSL patients. That is not correct so I am searching for what my next step will be. I am trying to get into one to the special RLS clinics but they are 3 to 4 months out on appointments. Life is everything but enjoyable because of the lack of sleep and the inability sit for any amount of time. I cant even drive for 30 minutes without getting the terrible urge to move. I am move than happy to travel anywhere in the US to see someone that can help get this back on track. I may be new to this site but I am everything but new to RLS. Any help would be appreciated.

ViewsAskew
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Re: 8 mg's requip

Postby ViewsAskew » Tue Sep 16, 2014 5:51 am

Oh my. I feel for you.

In my opinion, you made the right choice. You clearly have augmentation and dealing with it is extremely important.

You have a few options. You mentioned you can travel. As a general rule, I can get an appointment with Dr Buchfuhrer within a month. I try to schedule farther in advance because I try to coordinate a cheaper flight, but I've had to do it on short notice and was able to get in within 2 weeks, if I remember correctly. He is in the LA area - south east in Downey, CA.

Other good docs might be closer to you. We know of excellent doctors in several places - Michigan, Texas (both Houston and Dallas), Maryland, Minnesota, Georgia, Washingon State, among other places. Let us know where you are, or check out the recommended doctor sticky post in the General section (link: viewtopic.php?f=5&t=8115). We try to copy any member's recommendations into that thread.

EDITED: I see from your other post that you are in SW Missouri. I know there is a doctor in Arkansas, but not sure if I remember anyone in Missouri that's been recommended. One of our members, Rubyslippers, is in Missouri, but I do not know where. After you have three posts, I think, the system allows you to private message someone. You could look up rubyslippers and message her to ask her if she thinks her doctor would be qualified to handle your situation. One other option - the search function works pretty well. You can search on Missouri and see if that helps. Another thing I've personally done is a websearch using the term RLS, a large close by city, and the word research - for example ""RLS Kansas City Research". That often finds doctors who've written research papers about RLS/WED and they can be good sources.

Dr Buchfuhrer (commonly referred to as Dr B) and whom I mentioned above, has written books about WED/RLS and is on the WED Foundation's medical advisory board. He accepts patient letters asking him questions about treatment. He prints all the letters on his website - rlshelp.org. If you think that a letter from his would help your doctor help you, you might want to try that. His email is somno@verizon.net. Also, reading the letters he has written to other people can be VERY helpful, especially to take to your doctor.

I hope you can get to see someone very soon. I've been in a similar place and it was indeed miserable.
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.

Polar Bear
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Re: 8 mg's requip

Postby Polar Bear » Tue Sep 16, 2014 4:07 pm

I have written several times to Dr B and had a response within a day or so, using the response to guide my GP.

If I lived in the US I would be more than willing to travel and pay for an appointment with Dr B.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

pblackwell
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Re: 8 mg's requip

Postby pblackwell » Wed Sep 17, 2014 3:44 am

Thanks for the info on physicians. I called Johns Hopkins about geting an appointment with Dr. Early and mid January was the first date available. I would love to see him but I cant wait another 4 months to get some resolution. After dealing with this for 17 years I really want to find something that helps. I think this site is a life saver. I feel like I have others to talk to that are in this terrible disease with me. Everyone knows what pain feels like but you have to have RLS to know what it feels like and how it can destroy your life. I will continue to read all of this great info and hope to find a physician that gets RSL and knows how to treat.

ViewsAskew
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Re: 8 mg's requip

Postby ViewsAskew » Wed Sep 17, 2014 8:16 am

Wow - just goes to show how much we need more docs who understand this disease. *

Definitely try Dr Buchfuhrer. I can't guarantee he can see you that quickly, but I am pretty sure I had my first appointment with in about 3 to 4 weeks after I called. Of course, that was several years ago.

Another option - ask to be put on a wait list. Sometimes just telling them that it's a problem helps. But, even if they can't move you up, tell them that you need at least a week or two notice (or whatever you need to get a flight) and that you want to be called with any openings.

*You just reminded me that when I was in your shoes (and hadn't learned of this forum, yet) my PC doc gave me a referral to a doc who was considered the best neuro in this around here. It was a 6 month wait. After a month of waiting and calling regularly to see if there was a cancellation, they suggested I see this doc's colleague, who was just as qualified, they said. It was only 6 weeks wait to see her. I saw her and she was clueless. I had to come back and see the original doctor anyway - but because I was now a patient I only had to wait 2 more months - a total of about 4 months all told. You likely know the ending - this "great" doc didn't believe in augmentation, didn't use opioids, and wanted me to continue as I was for 12 to 18 months when a new drug was due to come out - this was 2005. I come here every day and wonder how it is so similar, in many ways, almost 10 years later.
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.


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