Ropinerole dosage

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hdf
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Joined: Thu May 30, 2019 6:26 pm

Ropinerole dosage

Postby hdf » Thu May 30, 2019 11:18 pm

Greetings all. I'm new in this environment. My RLS, or twitchy leg movement, was diagnosed a year ago during a sleep study. I didn't address it, or realize i needed help, for six months or so when I brought it up with my doctor. While he's not RLS "certified" he's a good listener and is an RLS sufferer himself so is sympathetic. I believe, based on my brother's experience, that my case is a mild version. It seems to be a nighttime-only variety to this point in time.

My doctor first started me out with 0.5 mg twice a day. That seemed to work but really didn't. He then bumped me up to 0.5 at 3 PM, 0.5 at 5:30 PM and 2.0 at 8 PM. In reading through the introductory blog I found one notice that said a 1.0 MG dose should be the highest used. That got me to thinking. Am I overdoing things? My brother had serious problems with ropinirole and the process wherein your dosage comes back to bite you in almost an overdose situation. He finally got off of the R drug and now has had good luck with a patch of some variety.

Can generalities about dosages be made or did I read that material wrong? How'm I doing folks?

Many thanks,
hdf (not sure how we're supposed to sign off on these e-mails)

Rustsmith
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Re: Ropinerole dosage

Postby Rustsmith » Fri May 31, 2019 1:23 am

hdf, welcome to the board.

The maximum dose of ropinirole that is recommended these days by the experts is 1.0mg. However, older literature allowed up to 4mg for treating RLS. However, when it comes to treating RLS, less is better so long as it keeps control 90 to 95% of the time. Did your doctor order blood work? There is a form of iron in our blood called ferritin. A doctor has to specifically request it. Normal ferritin for the general population is anything over 20, but for anyone on a dopamine agonist like ropinirole, your ferritin needs to be at least 75. So, talk with your doctor about this because you may need to start taking an oral iron supplement. In fact, increasing your ferritin level might even be enough to control your RLS.

As far as night-time only, do you get it in the evenings before going to bed, does it hit you once you lie down to go to sleep or is in something that only occurs while you are asleep. All are important, the differences are simply one of degree.

As for your brother's patches, they are rotigatine, which usually goes by the tradename of Neupro. They are many times more expensive than your ropinirole, but are sometimes used once someone has augmented on ropinirole or pramipexole (Mirapex).
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

hdf
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Joined: Thu May 30, 2019 6:26 pm

Re: Ropinerole dosage

Postby hdf » Fri May 31, 2019 7:54 pm

Rusty, Thanks to this forum I was made aware of the Ferritin issue and have e-mailed my doctor on the matter. I had an extensive blood panel done a few months back but, in reading the results, see no mention of ferritin. I also sought his permission to cut my 2.0 mg tabs in half and try that as my overnight dosage. If appropriate I will post the results of my exchange with him. As an aside, he has told me that my dosage is precisely the dosage he personally takes. I realize that is "neither here nor there" as regards my own situation.

I realized, after submitting my post, that it was weak in many areas. I am a 76 year old Caucasian male. I don't know if race is believed to play a role in the RLS conditions. I exercise regularly both in the gym and on the golf course. My diet is weak on vegetables and strong on meat and carbs. My alcohol useage has dropped to insignificant levels, i.e., a beer or two a week. Two cups of coffee daily though I find myself able to stop drinking coffee with no particular side effects. My symptoms may occasionally flare up during the late afternoon but more often occur once I crawl into bed. I've found that a good hot bath will, for now at least, control those symptoms. Also, my bed is one of the mechanical ones (hospital style) and I sleep with elevated feet and head. It is a wonderful change for me from the total prone position I've occupied the last 7 decades. I have an electric mattress pad for heat and the bed has vibrate option for head and feet separately.

You are spot on with your description of my brother's patches. His RLS has been significant. Inability to sit through a musical or a movie, etc. Night times were a nightmare for him. He was seeing an internist at the VA who was well intentioned but allowed him to go into the augmentation mode. He has successfully withdrawn from ropinerole. The expense of the patches has led to some difficulties but the VA has been working with him on that issue. He now sees a neurologist in Portland, OR who has experience in these matters. His difficulties are complicated by a diagnosis of early onset Alzheimer's.

I sense a great deal of uncertainty in all of this. Some successes, some failures. Attribution to specific causes seems very difficult.

I hope I've given greater insights in this posting.

Kind regards,
hdf

Rustsmith
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Re: Ropinerole dosage

Postby Rustsmith » Fri May 31, 2019 9:26 pm

You have already found the one, non-medication treatment that many of us use, namely a very hot bath. Soaking our legs in water that is as hot as we can stand is something that many of us do (the others use very cold water).

As for as causes, it all comes down to low iron levels in the brain. For some, this can be tied to conditions that reduce iron stores in the body, such a kidney dialysis, anemia and pregnancy. For many of the rest of us, it appears to mostly be genetic. There have been a number of genes correlated with RLS, but so far no one knows about how these genes cause it. Racially, those of us with European ancestry have the highest chances of having RLS (something between 5 and 15% in the studies). Asian ancestry has somewhat lower chances and African ancestry reduces the chances to near zero.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

badnights
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Re: Ropinerole dosage

Postby badnights » Thu Jun 06, 2019 6:59 am

Hi hdf
The danger of ropinirole is augmentation, which is a worsening of the disease symptoms brought on by the very medication that is supposed to help you. In augmentation, symptoms begin earlier and earlier in the day, spread to other body parts (arms, sometimes torso), become more intense, & begin sooner after sitting or lying down. The natural response for a doctor who doesn't undestand augmentation is to raise the dose. That. unfortunately, just causes worse augmenation.

Most specialists are in agreement that augmentation must be treated by stopping all dopamine-type medications for a couple of weeks. Some specialists will keep you off those medications forever; others will re-introduce the same medication at a lower dose, perhaps in combination with an anti-convulsant or an opioid, or will introduce one of the other dopamine-type meds, usually rotigotine, because its long half-life lets it mask any growing augmentation for a time. Many people - most, perhaps - eventually augment again if dopamine-type meds are a daily part of treatment, unless the dose is very low and ferritin levels are high.

If you continue taking ropinirole at those dosages, you're likely to augment. The risk of augmentation increases with increasing doses of dopamine-type medication, AND with decreasing serum ferritin. Ferritin is not part of a standard iron panel, so it;s not surprising it wasn't in your results. Ferritin levels below 75 have been correlated with high risk of augmentation, and most specialists try to get their patients' serum ferrtin over 100. Encouragingly, ferritin levels over 75 correlate with better symptoms.

I hope your brother's ferritin levels are over 100 since he;s still taking a dopamine-type med and still in danger of augmenting. In fact, if he never went through a period of withdrawal from the ropinirole, in which he took no dopamine-type meds at all for 2 weeks, then he may still be augmented. The only way to end augmentation is to suffer through the withdrawal, which consists of even worse symptoms that get better over a period of days to weeks.

I can tell that you want to work with your doctor but I have a feeling he is not good for you. Both you and your doctor are on higher doses than recommended, and his lack of concern is concerning. He didn't check your ferritin before he prescribed it, yet for some people, all that;s needed to control the symptoms is to take oral iron. He put you on ropinirole when a safer alternative for most patients would be one of the anti-convulsants (Horizant/gabapentin encarbil, or its less-effective cousin gabapentin, or Lyrica/pregabalin). Your ropinirole dose being so high when you're just starting out places you on the fast track for augmentation, especially if your ferritin is low.

Please get your ferritin checked. It's probably a good idea to cut your final nightitme dose in half; decreases in this medication don't usually need a doctor;s guidance unless you're dropping from very high to very low doses, but be sure to tell him about it. Any cutting back you can might prevent some agony. Is there an RLS Quality Care Center anywhere near you?

Your bed arrangement is ideal. I raised the head of my bed by putting bricks underneath, and old pillows between the head of the mattress and the box spring. And like Steve said, hot baths are helpful.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

jerrymeadlucero
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Re: Ropinerole dosage

Postby jerrymeadlucero » Sun Jun 09, 2019 5:28 am

hdf, When I was diagnosed with RLS two months ago my primary care doctor immediately put me on 1 mg of Ropinirole once every night. It did nothing for me, but that is probably because it turns out RLS is not my problem. Unfortunately, because of the misdiagnosis, I was taking 1 mg of ropinirole nightly for over a month. Then I had to do slow weaning off the medication that took another month. During that whole experience, I researched ropinirole and not only learned about the dangers of augmentation but found out that the starting dose of ropinirole for RLS suffers is .25 mg and 1 mg is the max recommend. So due to my primary care doctor's ignorance, she put me on the highest dosage possible right from the beginning. Not a good idea. So when I read how much your taking I thought HOLY COW THAT'S A LOT! My advice is to cut down your dosage dramatically but gradually. The advice offered by the others here is very sound and they have much deeper knowledge than I. And find a doctor who really understands current treatment models for RLS. Your doctor sounds like a good guy but he sounds hopelessly out of date on how the experts in the field now treat RLS. The good news is you have come to the right place. This community is amazingly supportive and they will help you navigate this disease. Hope that helps.

ARVSVV2019
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Re: Ropinerole dosage

Postby ARVSVV2019 » Sun Jul 07, 2019 6:14 pm

I am a new member of this forum. I have been dealing with RLS and on Ropinerole for years, presently at 2 Mg. which I now realize by reading your posts that I am taking too much. I have an appointment with a new neurologist in a couple of days to discuss the results of an extensive blood work he ordered on June 26. Your comments have been of great source of knowledge for the upcoming meeting with the neurologist.

ARVSVV2019
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Re: Ropinerole dosage

Postby ARVSVV2019 » Sun Jul 07, 2019 6:29 pm

Yes I had my Ferritin level checked back in 2016; at that time was in the low 40's. Three months later it went up to 49, and most recently is at 84. A point which I will be discussing with the doctor. I am also low in vitamin B6. I have tried taking vitamin B12 orally but I can't tolerate them. The only med I have been on for RLS is Ropinerole.

Rustsmith
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Re: Ropinerole dosage

Postby Rustsmith » Sun Jul 07, 2019 6:47 pm

It is good that you have been able to get your ferritin level up from 40 to 84. It would be better if you can get it over 100, but that is difficult with oral iron supplements. One of the recent changes to the recommended treatment of RLS has been the addition of IV iron as the first line of treatment. But don't be surprised if your new neurologist isn't aware of this since it is a rather recent change.

As for ropinerole, hopefully your new doctor will be familiar with treating patients who have augmentation and will be able to help you get off of ropinerole without too much difficulty.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

stjohnh
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Re: Ropinerole dosage

Postby stjohnh » Sun Jul 07, 2019 11:34 pm

ARVSVV2019 wrote:Yes I had my Ferritin level checked back in 2016; at that time was in the low 40's. Three months later it went up to 49, and most recently is at 84. A point which I will be discussing with the doctor. I am also low in vitamin B6. I have tried taking vitamin B12 orally but I can't tolerate them. The only med I have been on for RLS is Ropinerole.


Welcome to the RLS forums. You are finding lots of good information. Here is a bit more about recent advances in understanding the causes of RLS.

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood tests doctors usually do (ferritin test) to check for low iron only check for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub
Blessings,
Holland

ARVSVV2019
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Re: Ropinerole dosage

Postby ARVSVV2019 » Mon Jul 08, 2019 3:43 pm

Thank you for sharing this information. Although I have been struggling with RLS for years I never took the initiative to learn more about it. I allowed my doctors to dictate what to do. Frankly they were clueless. Now, I believe I have a good neurologist and with all this new information I will be in better position to discuss my issues. Thank you and God Bless. Armando

Rustsmith
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Re: Ropinerole dosage

Postby Rustsmith » Mon Jul 08, 2019 4:28 pm

Armando, educating yourself about RLS is critical unless you are seeing one of the very limited number of RLS specialists. A great way to learn more is to get a copy of the book "Clinical Management of Restless Legs Syndrome", 2nd Ed. by Lee, Buchfuhrer, Allen and Hening. This book was prepared for doctors, but is written in a way that you can also understand what they say. It covers both the meds used to treat RLS as well as the ones (like the anti-depressants and some anti-histamines) that aggravate RLS. The book costs about $35US and is available from Amazon.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

ViewsAskew
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Re: Ropinerole dosage

Postby ViewsAskew » Thu Jul 11, 2019 8:40 pm

ARVSVV2019 wrote:Thank you for sharing this information. Although I have been struggling with RLS for years I never took the initiative to learn more about it. I allowed my doctors to dictate what to do. Frankly they were clueless. Now, I believe I have a good neurologist and with all this new information I will be in better position to discuss my issues. Thank you and God Bless. Armando


I thought I knew enough - and waited until they were sure that these "new" drugs (then pramipexole and ropinerole) really worked before I went to see a doctor. Turned out neither of us knew enough and weren't aware of augmentation. My life has been a roller coaster ride ever since. I know make sure I know MORE than any doctor for just about any issue I have. In some ways, I would very much rather be ignorant. I also know that I cannot ever do that again.

Here is hoping the doctor is as good as it seems and that it all works out for 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.


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