newbie on 3 rd night of Requip

[sleeplessinMA]

Hi, I'm new here, although I've been lurking for several years . finally I am seeking treatment for my RLS, I am 40 and have had it for as long as I can remember well into my childhood...actually, I believe my 7 year old also has it.. My RLS is not painful, just the insatiable need to stretch and move. It usually only bothers my legs, but if I'm overtired I can feel it in my arms, chest (as a need to sigh), and even sometimes my genitals (is that unusual?), I experience it probably 5 of 7 nights. It is worse if I drink alcohol, exercise too much, am over tired, drink coffee later than noon, or use benadryl or pseudoephedrine...at least I know what makes it worse, now if I could just get rid of it altogether!. Recently I finally visited my PCP and asked for treatment. She did check my iron and ferritin, which were "normal", however, my ferritin was 60. She started me on Requip .25 mg/day for 3 days, then .5 mg every night after that. I am on my 3rd night of Requip, I can't tell yet if its helping, it does give me mild nausea, and very vivid dreams....but so far not nightmares, just strange. I've been considering starting an iron supplement, but just haven't gotten to the store to buy some. Anyway, I just wanted to say hello. Thoughts or comments are welcome.

[sleeplessinMA]

I'm sure this info is here somewhere, but I can't find the answers i'm looking for so I would appreciate any help you can offer. My PCP just started me on Requip for my WED,I am on 0.25 mg for three days, then 0.5 mg after that. i have had my ferritin checked, it is 60, i am currently not supplementing iron. Here are my questions for people that know:-)

1. how long should it take before I know if its helping
2. Why increase the dose after only 3 days...what if .25 is all I need?
3.I know it says not to drink alcohol, but what if I do have a few? Should I skip the dose that night?
4. If I experience side effects (thus far some mild nausea, and strange, but not scary dreams), will I always have those side effects, or does your body adjust and those side effects lessen?

My WED is not painful, it wakes me or gives me restless sleep 5-6 nights/week. I have an insatiable need to move, and mostly stretch behind my knee and my hamstring...in fact just talking about it makes me want to stretch right now . Occasionally it will bother me in my arms and chest, but only if I'm really overtired.
Thank you all so much!

[ViewsAskew]

Welcome. Sorry you had to find us....

Some quick thoughts.

1. Ferritin of 60 isn't high enough. At least 100, especially if you're going to take ropinerole, pramipexole, or rotigotine.

2. The newest info on ropinerole is that you do NOT want to increase it if at all possible. Lowest dose that works, don't increase. If it were me, I'd stay at .25 for at least a week, maybe two. Let the nausea subside and see if the dreams decrease.

3. When are your symptoms worst? You need to take ropinerole at least 60 minutes before the symptoms start. You may be taking it after it starts, then it's not as good.

4. The more we know about the dopamine agonists, the more concerns there are. Do some research, find out more, and you may decide to keep taking them or to ask to switch to something in the anti-seizure class. Horizant is the newest and seems to be helping quite a few people. It can make people really sleepy for the first few weeks, but sleep is AWESOME! Other options in this class include gabapentin (Horizant is a version of this) and pregabalin. These do seem to work really well for peopple with painful WED, but it's worth a try.

5. While not usual, people do get the sensations in all body parts, including genitals.

So sorry that your child likely has it. Hopefully he or she will not need treatment as a child.

[ViewsAskew]

I put your two posts together because there was overlap. I wanted to make it easy for everyone to answer you and for you to have all your answers in one place.

[ViewsAskew]

So, in answer to the first post here and the things I didn't say in the other post....

1. how long should it take before I know if its helping

See answer above. Take it before it starts. See what happens. One thing I didn't say above - you may need to take two doses, one in the late afternoon or early evening, then another before bed. Ropinerole lasts about 4-6 hours. So, say symptoms start at 9 PM. You'd need to take it at 8 PM at the latest (earlier if you take it with food), and then it will have worn off by midnight to 2 AM. Most of us still have strong symptoms until at least 2 to 3 AM and milder ones after that.

2. Why increase the dose after only 3 days...what if .25 is all I need?

See answer above - keep it as low as you can, as long as you can. Very important with this drug.

3.I know it says not to drink alcohol, but what if I do have a few? Should I skip the dose that night?

When I used a DA and drank, I was more impaired than normal and would get very sick - vomiting. I learned not to do it. If you want to drink and not sleep, just don't take it. I decided I preferred to sleep, so my my nightly glass of wine with dinner was stopped or because a nightly sip.

4. If I experience side effects (thus far some mild nausea, and strange, but not scary dreams), will I always have those side effects, or does your body adjust and those side effects lessen?

Some may, some may not. it's been 8 years since I took my first dopamine agonist and I still have vivid weird dreams. I don't have some of the other side effects, though. Nausea often goes away. Being excessively tired the next day often does, too. Some may stop to come back at a later time, and you may develop new ones along the way.

[sleeplessinMA]

Unless I am extremely overtired, my symptoms only bother me at night. Typically I can get to sleep, but wake up an hour or two into my sleep. I used to work nights and it was awful, but now that I'm on a regualr schedule, and recognize what foods, meds to avoid, my symptoms only bother me at night. The past two nights I took the Requip at the same time I went to bed, that way I slept through the nausea, and it actually seemed to help, I don't remember waking at all. I had strange dreams the first 2 nights, but don't recall dreaming last night, I even had a few drinks last night, which usually makes my WED worse, but didn't seem to last night.

I will stay on the .25 for now instead of increasing the dose, and I'll pick up some Iron today...does that seem to be the best way to increase Ferritin?

Thanks everyone!

[Polar Bear]

Taking iron does seem to be the best way to increase ferritin but it is a slow procedure so don't expect to see results quickly.

[ViewsAskew]

I've read that the higher your ferritin level is, the harder it is to raise it with oral iron. I would take iron if well tolerated. If not, I'd consider an infusion or switching to a different drug. The reality of augmentation is so severe that I wouldn't wish it on anyone. We know that people with ferritin levels of 100 or more are the least likely to augment. When I came to this board in 2005, I was one of a few who'd gone through augmentation. Now we get posts about it every week. The scary part is that we don't know if it changes out brain chemistry forever and if it does, what does that mean. Might not be an issue that it does. Or, it might be very bad. In the meantime, I think caution is wise.

[sleeplessinMA]

that being said Viewsaskew, what do you recommend for treatment?

[ViewsAskew]

Only you can decide. I started out much as you are, not knowing a lot, but some, and listening to my doctor. You're ahead of me by reading here and finding out the latest scoop. We didn't know much about augmentation in 2004 when I started on them. We knew of augmentation, but thought it was a small risk. Now we know that it's much more dangerous than we thought and that almost everyone whose ferritin is lower will get it.

If I knew what I know now, I'd never have taken a dopamine agonist without getting my ferritin level high. Some research suggests that the WED will go away for a percentage of patients if you get it high enough. I'd push my doctor to try that. Look for research out of Johns Hopkins done by Earley and Allen, along with Connor (another hospital). If that didn't work, I'd try either Horizant or gabapentin. If it didn't work or I couldn't tolerate, I'd try a dopamine agonist, BUT, I'd take every weekend off with tramadol or an opioid. I'd refuse to take a DA full time.

I was losing my hold on life/work when I started down this path, but it was ultra accelerated. The acceleration doesn't happen to everyone, but is does to enough of us that it seems too much of a crap shoot to take a chance. I doubt many doctors would agree with me.....but they aren't living my life.

As with every post here, this is my personal opinion. I'm not a doctor! Then again, maybe that is a good thing .

[jakesmom]

Welcome,

Glad you are here, but sorry you have to be here.

If someone addressed this and I missed it, I apologize for the repition. Benadryl and cold medicines and sleep aides containing its active ingredient are known to make WED symptoms worse, so avoid them when at all possible. Also, I take 1200 mg of calcium and 800 IU of Vitamin D daily and it has made a huge difference for me. Caffeine has been known to make symptoms worse as well.

I wholeheartly agree with ViewsAskew. Take the lowest dose you can for as long as you can before titrating up.

There is alot of information on this site and if you have any questions, please don't hesitate to ask. If the moderators dont know the answers, they know people. This site and its people have been a Godsend.

[sleeplessinMA]

Thank you all for your replies, I waited so long to ask for medication because I had read about all the side effects caused by the drugs for WED, I finally decided I need a good nights sleep. I'm happy to say that since beginning Requip, I have slept through the night each night without waking and having to get up and stretch! I"m on my 5th day of .25 Requip, I decided NOT to increase the dose after 3 days like my PCP had written. I realize that eventually I may need to increase the dose, but for now I'll continue on as is...it seems like ALL of the drugs have one awful side effect or another..I have learned to take it immediately before bed, or else I'm nauseated, I know WED causes some people to not be able to fall asleep, for me it has almost always caused me to wake up a couple hours into my sleep and ruin my night from there on....so taking it before bed seems to work for me. Still some odd dreams, but not nightmares, so that's ok.
Thanks for listening and for your help

[Polar Bear]

I'm so glad that this is working for you, and you are correct to stay at the dose that is working.
Enjoy your sleep.....

[jakesmom]

I'm glad you're not sleepless any longer. DA's are little miracle workers. I took Mirapex for over 10 years; most of that time with very good results.

You are very wise to opt to stick with the lowest dose possible. My 2 cents of advice is to stay at the lowest dose that controls your symptoms for as long as you can and when the day comes and you increase, please don't rush to higher doses.

Enjoy your restful nights of sleep. Zzzzzzzzzzzzzzzzzzzzzzzz

[sleeplessinMA]

Bah, I had an AWFUL night last night. I was getting a migraine so I took Imitrex (which is also newly prescribed for me). Because I had only taken it once before, I did not take my Requip before bed....needless to say it was a sleepless night. I checked the linked of drugs to avoid and didn't see Imitrex there. Do you have any guess as to if the Imitrex exacerbated WED, or do you think I had an awful night because I didn't take the Requip. I'm only taking .25 for 5 days, would skipping a day cause it to be worse than before? It was one of the worst nights I can remember.
Thanks