Restless Legs Syndrome (RLS) Discussion Board

Started with .25 4 yrs ago. Now on .5 and it is not working as well. What is the next increase. .25 or .5 ? I fortunately need this only at night. Also does a glass of wine at dinner increase the RLS?

Glad you got this posted. This is a very important question.

Recent research suggests that you may be having augmentation. This is when the medication causes the symptoms to be worse. Mild augmentation is managed by an increase, but the more times you increase, the worse the augmentation gets.

I have to run right now, but I'll post more when I get back.

OK, finally back.

Augmentation is probably the biggest issue with dopamine agonists and we now know that most people eventually augment. When you start taking one of the dopamine agonists, it's best when you can stay at the same dose for a long time (several years). If you need a dose increase within 2 years of being prescribed one of these, experts say augmentation is likely the cause (rather than the disease worsening). And, once you start increasing the dose, it's likely you'll need to keep doing so.

At low doses, some doctors feel this is OK - to increase it. But, at some point, you have to stop the drug because you'll need to take multiple doses of it and a lot more of it. When you take a dopamine agonist, experts now say* that the max dose of ropinerole (Requip in the US) is 1 mg. You're not close to that, but you have to decide if you want to get to that max or not.

If you decide you do not want to take more, you likely will have to take a break from this drug for at least a month or two, then potentially you could go back to it. If you decide you want to keep increasing it, take the smallest increase you can. It's up to you to decide. You can take half of a tablet, for example, instead of a whole one. You never want to take more of a dopamine agonist than you need. So, we can't say how much you should increase it to next time. You might decide not to increase it and take something else for awhile, or to increase it by trial and error, taking only as much as you need to control the symptoms.

There can be other reasons that you need to increase your dose - such as taking a new drug that may be worsening the WED/RLS, or doing something else that may be exacerbating it. Another likely cause are ferritin levels. The non'RLS/WED population can get by with serum ferritin levels of 15 or 20. But, we know that people with WED, especially if they take a dopamine agonist, need to have their serum ferritin closer to 100 to prevent problems.

If you have not had a serum ferritin test, ritomko, please ask your doctor to perform one. Also a standard hemoglobin test. Then, ask for the actual reading - the doctor's office may tell you your serum ferritin is fine when it's below 100, because many doctors aren't aware that it should be at least 100.

Hope this helps.

*Go to this post and look for the entry called Buchfuhrer's 2012 paper, and click on it to open it to see in print where one of the WED/RLS experts talks about max dosages:
viewtopic.php?f=5&t=6532&p=61601#p61601

My pharmacy says that when you split the Requip/Ropinirole pill it will not work, so no good doing that. Most pills with sort of smooth layers are having this issue.
I live in Europe, so I do'nt know if this works in the USA like this though. Just to let you know.
Corrie

Corrie - interesting, I split a pill 4 times daily ??

cornelia wrote:My pharmacy says that when you split the Requip/Ropinirole pill it will not work, so no good doing that. Most pills with sort of smooth layers are having this issue.
I live in Europe, so I do'nt know if this works in the USA like this though. Just to let you know.
Corrie

I don't use Requip, but I split pramipexole in the US regularly. It's marked for splitting and breaks very easily. Never had an issue with it.

I split the pill and didn't notice that it worked better and I always thought it was because I should have taken more. Then I asked the pharmacist and he said what he said. His philosophy is probably true (he has been a wellknown parmacist for 30 years) when I think of the difficult to cut Requip pills, the non generic ones. They were probably made like that for just that reason, don't you think?
Corrie

cornelia wrote:I split the pill and didn't notice that it worked better and I always thought it was because I should have taken more. Then I asked the pharmacist and he said what he said. His philosophy is probably true (he has been a wellknown parmacist for 30 years) when I think of the difficult to cut Requip pills, the non generic ones. They were probably made like that for just that reason, don't you think?
Corrie

Could be. I haven't taken them in so many years, I can't remember what they look like! But, things with a hard shell are often not meant to be cut.

And, maybe the shell differs in different countries?

Corrie, I know the shape you mean. I am more often given the generic ropinerole than the requip.
I reckon it's important to know if splitting the pill renders it inefficient.

I take 2MG Requip 4x a day and Garbapentin 500 3x a day. I quit my job the day I was prescribed this treatment. I have been on both separately and they can knock me out but together I knew it would be a problem as I drive 45 miles to work. But I have been on this for one week and NO LEG EPISODES AT ALL! I am sleeping better-5 or 6 hours at a time and I was going through hell the last few weeks on Carbidopa. I have not felt so good in years! Will see how it goes.

shelby1 wrote:I take 2MG Requip 4x a day and Garbapentin 500 3x a day. I quit my job the day I was prescribed this treatment. I have been on both separately and they can knock me out but together I knew it would be a problem as I drive 45 miles to work. But I have been on this for one week and NO LEG EPISODES AT ALL! I am sleeping better-5 or 6 hours at a time and I was going through hell the last few weeks on Carbidopa. I have not felt so good in years! Will see how it goes.

Huh? You take that much? You quit your job! Together they knock you out so you take both together??? No problems at all! No wonder, you must be totally zonked. I hope this is a joke. Sort of a mind blowing first post.

shelby1 wrote:I take 2MG Requip 4x a day and Garbapentin 500 3x a day. I quit my job the day I was prescribed this treatment. I have been on both separately and they can knock me out but together I knew it would be a problem as I drive 45 miles to work. But I have been on this for one week and NO LEG EPISODES AT ALL! I am sleeping better-5 or 6 hours at a time and I was going through hell the last few weeks on Carbidopa. I have not felt so good in years! Will see how it goes.

Shelby, welcome. Not trying to alarm you with my first post to you, but like EeFall, I immediately was taken aback when I saw what you're taking.

That is a lot of ropinerole to take. Recently, the foremost specialists have determined that all of the dopaminergic drugs should be taken at very low doses, unlike with Parkinson's. They were approved for higher dosages, but there are many problems at the higher doses. Here is a quote from the most recent publication - this book is written for doctors, by 4 WED/RLS specialists,

"The FDA maximum dose is 4 mg but as discussed above for pramipexole, not exceeding 1 mg a day may reduce the the odds of side effects. Similar to pramipexole, it is sometimes used off-label two or three times per day, which should also be done with caution."

Many doctors aren't aware of this yet. The book I quoted is "Clinical Management of Restless Legs Syndrome" by Lee, Buchfuhrer, Allen and Hening, just published in July, 2013. Dr Buchfuhrer answers patient's letters and posts them on rlshelp.org. He's written the same thing in his responses many times over the last couple years.

Did you augment on levadopa/carbidopa? My guess is that you did. Because you're likely augmented, you need these high doses to cover it. The problem is that this won't solve the problem. The only way to solve it, as I understand it and as written in books such as the one I mentioned above, it to stop ALL dopaminergics for awhile (and possible forever).

Let us know more about what happened to get you to this place. You must have been in a difficult spot to have to quit your job.

I believe I did augment on the carbidopa and in a very short time. I took requip for many years and had a problem with dropping off to sleep when sitting still or watching tv at 1mg 4x a day. I went off the requip in July and started the carbidopa in extended release. I have symptoms 24-7 not just at night. My primary physician said that the only thing he had left was a narcotic which I really didn't want to take. He referred me to a neurologist who prescribed the two together. I was on the garbapentin a few years ago after back surgery. That sometimes made me feel like I was drunk. So I knew the two together might be a problem. As far as quitting my job, I was ready to do so anyway. I had been going through hell he past 6 weeks or so with the leg symptoms and not sleeping. Since starting the two together a week ago I have been doing really well by staggering the two meds and have not had any symptoms which is absolutely amazing. My Dr said that is one of the worst cases of RLS he has ever seen. But I'm willing to work with this therapy for now anyway. Thanks for the info

shelby1 wrote:I believe I did augment on the carbidopa and in a very short time. I took requip for many years and had a problem with dropping off to sleep when sitting still or watching tv at 1mg 4x a day. I went off the requip in July and started the carbidopa in extended release. I have symptoms 24-7 not just at night. My primary physician said that the only thing he had left was a narcotic which I really didn't want to take. He referred me to a neurologist who prescribed the two together. I was on the garbapentin a few years ago after back surgery. That sometimes made me feel like I was drunk. So I knew the two together might be a problem. As far as quitting my job, I was ready to do so anyway. I had been going through hell he past 6 weeks or so with the leg symptoms and not sleeping. Since starting the two together a week ago I have been doing really well by staggering the two meds and have not had any symptoms which is absolutely amazing. My Dr said that is one of the worst cases of RLS he has ever seen. But I'm willing to work with this therapy for now anyway. Thanks for the info

Was the WED/RLS 24/7 when you first started taking the ropinerole?

shelby1 wrote:As far as quitting my job, I was ready to do so anyway.

Wow, that is a relief to hear, it sounded like to me that quitting your job was the direct result of starting the medications.

I actually have lost a few jobs because of the medications I have taken for WED. Once I went in and told off my boss and quit. Even after he called me at home the next day and tried to get me to come back to work I refused. If I take no medications then I have RLS 24/7 like you, and then I have to pace all day and night. Medications for WED, to varying degrees, make me irritable so I have to be very careful how I act around others.