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8 mg's requip

Posted: Wed Jul 23, 2014 7:57 am
by richviv
I am 68. In my early 20's i remember seeing a doctor because my forearms ached. Fast foward 20 years, in my 40's, my wife started telling me that i was kicking my legs as i slept. Time passes, now in my 50's, my beautiful wife and i no longer sleep together, i often wake in the morning with my covers literally scattered around tbe room. I wear out sheets where my feet are in a few weeks.

1999, i first hear the words restless legs. Hmm, i say to my self. Some time later ,maybe 5 years, the conditon turns from unpleasant to painful. I remember laying on the floor doing anything i cojld think of to minimize the pain. i see a doctor and tell him i have rls. I start on requip, 4 1 mg. Tablets .i use 2 a day. It works very well.

Fast forward till now, maybe 7 or 8 years, i am still taking requip ( generic), but i usually take 6 mg, maybe more. I no longer have much leg movement at night, my bed is easy to make. Also, through the night, though i sleep poorly, my legs are usually not problematic. About 5 days a month my forearms hurt for a few hours at night. This is helped by compression.

My problem has shifted to the day. Many days, i find it difficult to sit for more than a few minutes, without my legs beginning to ache and the need to move becoming impossible to ignore. As i am retired, i can, and do, stay on my feet maybe 80% ,or more, of the day. At 4pm or so i take 4mg of requip and usually, i then can finally relax and sit. If i miss taking the requip, my legs will soon hurt, but will stop after taking the 4mg plus 2 xtra. I usually take 2 more mgs at around 9pm and possibly 2 more later in the night. ( for me i consider 8 alot and i usually stop at 6 and sometimes at 4, but, people with parkinsons can take up to 22 mgs a day so , i guess i use that as a rationale for taking " so much" and i do worry about needing more and more.)I really find it hard to travel, but, i have to accept that. A plus of constant movement is i am 6 feet tall, 180 pounds , eat alot. and may be in the best physical shape of my life.

Now reading info here, i appear to be in augmentation of a sort..i certainly would like zero issues with wed, but i read so many posts where people are constantly looking for a med that will help. If i quit the requip, what then? Most likely a trail and error peroid of one or more meds, with who knows what result. If i knew that med x was a certain improvement, having conqured other problems-smoking,drinking, weight-i am confident i could stand the torture of quitting requip, but ...( i have tried mirapex, gapabentin, with no help, but was still taking requip) . My doctor would likely be willing to prescibe anything i suggest, WHAT DO YOU SUGGEST, i suggest?

Finally, and saddest of all, my 2 children, boy, girl. Both in their early 40's., are experiencing wed. Damn.

Re: 8 mg's requip

Posted: Wed Jul 23, 2014 1:43 pm
by Polar Bear
You have mentioned yourself that you are likely to be in augmentation.
Your dosage of ropinerole is way too high. It used to be that the max daily recommended dosage for sufferers of WED/RLS was 4mg. Recent experience has shown different and the experts now recommend a max daily dose of 1mg. You rightly state that the doses for parkinsons is much higher .... and so you are perhaps thinking that it is safe to take as much ropinerole as you are. However, the reason for the lower dose for WED is because the higher the dose of a DA medication, such as ropinerole, the more likely you will augment.

I'm glad to hear that your doctor is cooperative, is he knowledgeable about WED.
Have you had a blood Ferritin Serum level done. It is not normally done as routine. This is very important. It needs to be up around 100, and indeed no-one should be taking a DA i.e. ropinerole unless you are up around 100. If iron levels are low You can attempt to raise your ferritin by taking oral iron supplements. The sulfate or fumarate is generally more effective than the gluconate, but any of them should be taken with vitamin C to maximize absorption.

The general rule is that if you are augmenting, you should clear all dopamine drugs out of your system for 4 weeks before starting any again at a lower dose; and if you augment again, go through the process again, but do not return to dopamine drugs alone, instead try an anti-convulsant alone, an opioid alone, or one of those two in combination with a very low dose of a dopamine drug.

The anti-convulsants commonly used for WED are gabapentin/Neurontin, pregabalin/Lyrica, and gabapentic encarbil / Horizant. These don't seem to do a good job of controlling all symptoms, but for many people work well in combination therapy.

The opioids are effective in controlling most symptoms but sometimes have bad side effects. WED patients are not likely to get addicted to them, provided they are used in the amount prescribed or less and only for symptom relief. Most doctors are reluctant to prescribe them.

This book is great for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.

Many of us are constantly seeking a medication/cocktail that will work because not everything works the same for everyone, and not everything works for ever. But most of us eventually find a solution of sorts.

I'm really sorry to hear that your children are also suffering from WED. It is not a good friend.

Re: 8 mg's requip

Posted: Thu Jul 24, 2014 5:00 am
by ViewsAskew
Lots of great info and advice in Polar Bear's post.

When the drugs first came out, few doctors had experience with it. They looked at the data from the studies and said what you said - this isn't that much compare to Parkinson's patients. After ten years of data, they know that this isn't the case. It does harm us. While some of us augment no matter what, people at high doses always seem to augment. And stopping augmentation isn't fun.

If you want an answer from a doctor, write to Dr Buchfuhrer - - and ask him if there is an issue with it. He'll give his perspective.

Mine is that it just gets worse eventually. I did a similar thing as you. Kept taking more - it got worse, I took more. As with you, my doctor encouraged it. At some point, I couldn't control it anymore, even with higher doses. I had symptoms ALL the time, even medicated. I started having violent PLMW - periodic limb movement during wakefulness. I'd be trying to walk, having had no sleep, exhausted, and my legs would kick out and I'd almost topple over. I had weeks of less than an hour sleep per night.

As a famous author once said, the only way out is through.

As to what next? You don't know. As Polar Bear noted, it could be the alpha delta ligands (from the anticonvulsant family). If you use opioids to get off of the ropinerole (the only real option), you'll know in a month or so what your real level of symptoms is. The people here use many different options. A few years after I stopped pramipexole, I started using it again. I alternated it with an opioid. It was the best of both worlds in many ways. No dependence on the opioid, no augmentation on the pramipexole. Some of our members use other substances, from medical marijuana to kratom. There are few things that work for all of us, but there are many things that do seem to work for a sizable minority or a small majority.

I hear you per the kids - my oldest niece has it. It started when she was in her teens. She makes four generations that we know of in our family. It's disheartening to think that of all the *good* genes in my family, she had to get those!

Welcome to the group. I hope you find an answer that helps you get back to better quality of life.

Re: 8 mg's requip

Posted: Thu Jul 24, 2014 7:13 am
by richviv
Thanks. More later

Re: 8 mg's requip

Posted: Sun Jul 27, 2014 4:26 am
by richviv
I intend to try to follow the suggestions i have received and stop taking the requip ( or any other wed med) for a month. I plan to start this monday.
Today, i seen my dr. i told him about this website/organization and the suggestions i was given. He was certainly ok with my stopping requip for a month, a"drug holiday he noted. I mentioned a suggestion i be given an opiate to help me deal with the discomfort of stopping, he at first seemed confused, opiates are for pain he said ,as if to say, what does pain have to do with rls/wed, Now in his mind, he does not mind giving me pain pill, but he has justify it in his documentation-does a diagnosis of rls-( i doubt he has ever heard of wed)ever justify a pain pill. he must of thought of a way-he wrote a 30 day rx for 5/350 hydrocap/apap. One a day to be taken at bedtime. i am sure in his mind rls is exclusively a night time problem, or at least insurance companies, to whom he feels a need to justify his actions, think so. This line of thinking was more evident when i asked about an iron level test. he responded that a dx of rls oes not justify this type of test and that insurance would not pay for it. i just dropped my requestwhen he said this.
Now to be fair,he is ok dr. I do not expect him or any gp to be experts on rls. honestly, i think he may even skeptical that rls even is a 'real problem' but he listens, considers requests, does not preach,and sincerely wants to help also , important is if you call you can get an appointment the next day and if your appointment is 9 am , you are seen at 9am without exception. I need a referral to see a specialist/nuerologist. i did not ask him. first, for me it is just hard to do and second seeing another dr is just a 'gamble'. i might sit in some waiting room for 2 hours, and then see the specialist for 2 minutes and be told nothing different than my current dr.
anyway, i am not a person who enjoys the thrill of change. i would prefer to wear the same clothes everday, if my wife would allow it-which she will not.i hope not to fail, especially now i written publically about this. but i also know as mark twain said 'it is easy to quit (smoking), i have done it a 1000 times' that is try,try again.

Re: 8 mg's requip

Posted: Sun Jul 27, 2014 4:30 am
by ViewsAskew
I hope it works.

Too funny about your clothes, lol. I deliberate do not put my husband's favorite shirts away for a week or two after I do laundry, forcing him to wear other ones :-).

I hope this helps. It's NOT easy - please know that. Most of us, even with an opioid, went through a very rough period. The first week may seem unbelievably awful.

But, in my mind, it's worth it. I hope it will be in yours.

Re: 8 mg's requip

Posted: Sun Jul 27, 2014 6:14 pm
by Polar Bear
richviv -
I am glad that your doctor is cooperative - a real asset.
As regards getting your opiod to help you through this - your dr asks what has pain got to do with it. I guess it a case of .... how/what you define pain.

You now have symptoms during the day, and you are going to cease your DA medication which means that your present symptoms will greatly increase.
You've been prescribed 1 x pain pill each night. I hope with all my heart that this pain pill works, just thinking that you will be 'uncomfortable' 24/7, how long will pain pill work for ?

please keep us posted as to your progress.

Re: 8 mg's requip

Posted: Tue Jul 29, 2014 7:15 am
by richviv
i tried to stop requip last night,but the monster won-li ended up taking it. tonight,i will not lrgs became restless about 7pm it is 2am. my legs ,unless i am walking, will not stop moving. it us unpleasant,but so is staying in the hole i have been in. the pain pill was of little benefit. i wonder when i will be able to rest. i have a tablet so i watch nrtflix as i walk. , right now it is getting worse. fortunately for me, i have a great dog , and my dog likes my wife so i guess i have no choice but to like her too-even though she is kind of old and cranky.

Re: 8 mg's requip

Posted: Tue Jul 29, 2014 8:45 am
by richviv
4am. i type this as i walk.-=my favorite joke.
sam dies. mable ,his loving wife of 50 years goes to the newspaper to place an obituary.
the obit guy tells mable 'mable each word costs 50 cents'
mable only has a $1.00 ,so she writes 'sam died'
the obit guy recognizes the name and says 'i knew sam. he was a great person. you can have. 3 words for free'
so mable writes 'sam died, boat for sale'
life goes on , peroid.

Re: 8 mg's requip

Posted: Tue Jul 29, 2014 11:10 am
by ViewsAskew
It's very likely that the dosage you have will not be able to help. And, you may need to reduce the ropinerole more slowly because that is a high dose.

This will not be easy or fun.

Re: 8 mg's requip

Posted: Tue Jul 29, 2014 11:53 pm
by richviv
after reading tie previous post, about noon. , i took 2 requip nand after a a short whie i was able to sit and lay without discomfort and leg movement. i am in agreement that i cannot stop 'cold turkey' and am in the process of thinking out a tapering plan. thanks for helping.

Re: 8 mg's requip

Posted: Wed Jul 30, 2014 3:44 am
by ViewsAskew
If you can, try to taper without using the opioids. Wait until you actually stop to use them (if possible).

The best thing you can do, in my opinion, is to write to Dr Buchfuhrer - Tell him how much you take, that you want to stop it, and what and how much opioid you have. Ask him how to taper and stop. You can then potentially use his email to work with your doc.

Also, find a post by Badnights (I'm so tired I can't think straight or I'd do it) and look for the link in her signature. It's a paper by Dr Buchfuhrer and it tells how to stop these drugs (I think - may be misremembering).

You can give both to your doctor.

Re: 8 mg's requip

Posted: Fri Aug 01, 2014 9:31 am
by richviv
-this is what i think i know. 1. I would like to stop taking so much requip, even 'get off' it and try just 1mg. 2. If the 1mg is not 'enough', i have no idea what my
current dr. would do-if anything. 3. i have researched as much as i can into findinga more rls/wed knowledgeable dr. in my insurance network and even in my general
geographical area, without discovering anything very helpful-anything that tells me that this dr knows what to do or would at least 'work with me' on finding a good
plan. 4. travel is difficult, i (we) struggle financially, so i pretty much must find a local dr. 5. telling my current dr. -or probably most drs.'what to do' is only
limited in success and besides , i am not certain what to tell him. 6. when i missed taking requip at my usual times i went about 18 hours( actually 36 without
sleep),where i was unable to lay or sit -my legs would not stop moving and the pain was hard to ignore 7. at the end of 18 hours i took 2 requip and shortly my legs
calmed. 8. the next time i tried to miss a dose, shortly my legs were again out of control 9. i can only assume anytime my legs get out of control because of missing
or decreased requip , i will be unable to sit or lay down without my legs moving rigourously for more than 18 hours. 10. i have back problems as well, being on my feet
or what ever it is, aggravates my back so i also experience back pain at the same time.11. at this point ,though i had hoped for more,i have not taken more than 6mg,
instead of sometimes 8mg. 12. the 'pain pill' i was given is useless in stopping leg movement even when i took 'xtra'. 13. damn 14. i am going to keep trying to lessen
reqip and find a dr.15. but i am a lost puppy and my hopes are not very high. and if i only knew when my legs woulfd calm after no requip-24hrs,30 hrs when? 16, my wife gets more beautiful every day

Re: 8 mg's requip

Posted: Fri Aug 01, 2014 2:55 pm
by Polar Bear
So... your wife gets more beautiful every day... I am glad that this supersedes your previous comment of 'old and cranky'.....
However, I like your humour :roll:

Did you write to Dr Buchfuhrer, as Views suggested. He is very helpful and I would encourage you to do so.

Another suggestion, I know you said you were financially struggling, but this is a book that I regularly mention. It has all the information at your hand and can save time searching, also you can mark sections to take to your gp for discussion.
This book is wonderful, it is easy to read.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.
This is the same Buchfuhrer that we have suggested you contact by email. I have written to him several times and he has always responded. His reponse then makes a part of my next doc appointment.

Also, I asked previously, have you had your ferritin serum level checked, this is pretty important. You should have it done and get a reading.

Many of us are in your position with several medical issues going on an once, it's difficult circle, needing to walk because of WED and not wanting to walk because of a painful back.

Re: 8 mg's requip

Posted: Sat Aug 02, 2014 6:09 am
by ViewsAskew
I echo everything Polar Bear said. What you said about reducing the medication and getting increased symptoms - that is the number one way to know you've augmented. Only people who've augmented, as far as I know, have that happen.

Start with Dr B. You may be able to use that the educate your doctor. My GP knew nothing about WED, but he listened to Dr Bs response to me.

Get a used copy of the book. The first edition is likely a dollar or two used. You can use that with your doctor, too. It's written for GPs and other doctors, so in essence it tells them what needs to happen.

Find the paper Dr B wrote. I think you will find it in Badnight's signature. It, too, can be used with your doctor.

Get that serum ferritin test. If you have insurance, it should be covered.

Tell your wife how beautiful she is.

You can't lose with that combination!