I'm new here! mt RLS story and Requip question!

[MeAgainstYou]

Hi everyone my name is Brian I'm 28 and from New Jersey. As long as I can remember I always had "leg cramps". When I was a kid I'd tell my mom I couldn't sleep cause I had a cramp. It happened maybe 2 or 3 times a month. According to a home remedy book I had (it was like 1988...no internet just yet haha) it said curl your toes towards your head. Didn't work. Anyway fastforward to to 2007. I've always had a touch of anxiety so in early 07 i went to a Dr who gave me Paxil. I'm taking 30MG's which I hear isn't much. Around this time my legs got worse. I had RLS symptoms every night. Coincidence? My doctor thinks so. Anyway I started taking .25MG of requip. Worked pretty well. I was able to sleep. Eventually I had to bump it up to .50MG and now I'm up to 1MG. Requip was a godsend. I have very little side effects except I fall asleep a lot earlier then I used to. I was a night owl due to work (I work in entertainment) and i'd usually sleep 3am to 11am or so. Now I'm on a 12-8 schedule which I honestly kind of like. The worst part is when I do want to sleep in after about 7 or so hours of sleep the RLS pain comes back. If I take 1.25MG it helps a lot more but then I'm down for the count for a good 12 hours of sleep. I don't think my RLS is getting worse...i hope it's not. It acts up a lot when I'm driving, but only sometimes or if I'm just relaxing it comes back. Not fun. OK so anyway here's my questions...for all the requip users. How many MGs do you take? If I did get bumped to 1.25 is the a lot? I hate taking lots of meds!
thanks so much for reading!

[Sojourner]

MAY, Welcome to the board and thanks for the post. We especially like people from New Jersey (':D') !. I am not a Requip nor a Paxil user myself so have no first hand experience so I am just passing on my thoughts. With respect to Paxil, I think the general consensus is that that Paxil and many SSRI's tend to worsen RLS. Doesn't mean in all cases but that seems to be the flavor of many post here in the forum. In that class of meds (antidepressants), Wellbutrin (and several others) is often mentioned as more RLS friendly. Not sure that 1.25 mg of Requip is a lot and seems well within the recommended range. While there may be an average, that may not be the "optimum" for you. But, certainly knowing that would seem to have some value and good information. Have you had to increase your dosage frequently and quickly? Many here suggest that following the "package" recommendation as to dosing increases does not necessarily seem to be the best course of action but rather to take or increase your dose only as much as you definitely need. If Requip enables you to get 7 hours of good sleep (I am benignly jealous), than perhaps that med is doing a good job for you at that dose. I'm not sure that increasing the dose so you can sleep in for an extended amount of time is particularly good. One of the "axioms" for our rls meds, or any for that matter, is to take as little as you need. Sometime that means living on the fringe a bit with maybe not a perfect result but at least one that enables us to do what we need to do without a substantial decrease in quality of life. Hope that is coming out right. I'm not sure if your needing to increase your dosage or that your symptoms seem to be worsening earlier (after 7 hours of sleep) or more frequently represents any degree of augmentation or just a normal progression. But, it is something you may want to keep in mind or explore with your doctor. Your schedule is an odd one so perhaps your symptoms are more difficult to decipher with respects to medication effects.

If you have not read any of the "stickies" (Managing your RLS) I would urge you to do that. Andy, while I am sure you will get many first hand responses, you may also want to do a search with respect to requip and paxil. I'm sure you will get lots of additional information.

Welcome again, MAY, and best wishes.

M.

[MeAgainstYou]

thanks so much for the reply! I'm scheduled to meet with my Dr on Thursday so hopefully we can work something out. Personally I'd love to come off of Paxil and switch to something else or maybe just come off those type of meds completely. Paxil is a pretty crappy drug that's hard to come off of. I don't even drink or smoke and I sound like an addict! haha I was so fed up with the extra RLS symptoms about a year ago I said SCREW IT and stopped taking the Paxil completely. BAD IDEA. I lasted a day and a half. I felt like I had the flu and when I turned my head to either side it felt like my brain was swishing around in my skull...not fun..at all... I'll let everyone know what the Dr says on Thursday!

[ViewsAskew]

Hey, Me,

Paxil - definitely a correlation. While some people can take it and are fine, many cannot. But, there is a proven relationship.

Now, if you have to have it, you have to have it. You can either go through the difficulties of trying another SSRI to see if it works with less effect on your RLS, or you can stick with it, knowing you have to medicate to take care of how it affects you.

FYI, there is a link in the New to RLS sticky on managing RLS about how stopping some SSRIs is very difficult. Please read that - not to scare you, but so you know what to expect.

[Eternityroad]

How many MGs do you take? If I did get bumped to 1.25 is the a lot? I hate taking lots of meds!

I have been on Requip for about 2 months. I take 1mg/night and it is working fine. I was given the starter kit by my doctor and so worked up from .25 to 1 mg, gradually. I had to take Valium in addition at the early stages, but after I was on 1 mg. I had no need for the Valuim. I usually wake up once or twice a night, but have no problems returning to sleep. I actually wake up earlier now than I use to. I was use to retiring between 11-12 and getting up at 7:00 to be to work at 8. Now I usually go to bed 11-12 and wake up at 5-6 am refreshed and ready to go. I take a cat nap after work and am ready for the evening. Not sure this change in sleep habit is due to the Requip or not. But it's like I have an extra hour in my day.

BTW I have heard there is a generic form of Requip called Ropinol and I have posted in the Pharmaceutical forum to find out more.

Good luck.

Ken

[blryan]

I have been on Requip for 2 years, currently taking .5mg about an hour before bedtime. My neurologist says the usual dosage is between 1 and 2 mg, so my dosage is pretty low.

At one point I was on 3mg for a short while but got no additional benefit so went down to 1mg and now down to .5. I tried to go lower - bad idea! I tried .25 for 3 weeks and ended up with painful RLS.

My neuro doesn't mind at all that I play with the dosage. He wants me to find out what's best for me. He said he would be concerned if I got up to 4mg or more.

For now, at least, .5mg seems to work fine if I stay away from caffeine and sugar.

[bigu47]

Hi Folks,

Been on Requip (now Ropinole) for the past three years. Now at 2 mg. twice in the early evening. Takes care of the RLS symptoms from about 7 to 9 PM, but fall asleep rapidly at 9 PM to 3 AM. Then I'm up for the most part every day, occasionally fall back asleep for 15 minutes or so.

In my case augmentation is starting since the RLS symptoms are appearing as early as 1 PM in the afternoon. Trying to find a balance.

Just completed second Acupuncture treatment with no apparent effects so far as alternative treatment, trying to be positive here.

Yes, driving a car (traffic), watching a Broadway Play, Yankees game and a long flight do present a challenge. Just trying to manage this disease.

Regards,

Lee N.

[bbengtsson]

I've been taking Requip/Ropinerol for ~ 2 years. After the ramp up kit, I took 1mg for about a year then had to bump up to 2 mg. Now the 2mg is getting questionable. I'm getting RLS during the day now and the 2mg doesn't always work. Now I'm taking .5mg of Clonazapam and 2mg Requip. Seems to be working well.

[ctravel12]

Hi BB so glad to see that you are reading and posting on the board. I am so happy that the dosage of clonazapem and requip is working well for you.

You have a great day.

[Sojourner]

bb, just checking. You stated you are getting "rls during the day now." Does this means your symptoms are occurring earlier each day? If so, please consider the possibility of "augmentation." It is something you may want to nip in the bud, if that is the case, and/or at least discuss with you doctor.

Best wishes,

M.

[bbengtsson]

I'm glad I came back to review my old posts. It's a good history that I otherwise wouldn't have.
It's been 8 months since I posted using 2mg/Requip and .5mg/Clonazapam.
I'm having more incidence of the meds not working and having to take a second dose. In the beginning life was predictable. I would take the Requip and Clonazapam 1 hour before bed and one hour later I would be ready to sleep whether I wanted to or not. Now, it's a toss up. Sometimes I'm ready to sleep, other times I feel as though I missed my mouth and didn't take any meds and have to take another dose. I don't know if I am dealing with augmentation or steady worsening of RLS.
There is a correlation to food and meds that increases the effectiveness of the meds but I haven't figured out the recipe yet. I think it's dairy products. It seems if I eat a lot of dairy at the same time I take the meds, I get good results. The meds seem to work better if taken at the same time I eat. Empty stomach meds seem to be more likely to not work and require a second dose. In the beginning of Requip, I would become very nauseous an hour after mixing Requip and dairy products.
Exercise: Friday I rode my mountain bike to work and back for a total of 31 miles. It was over 100 deg on the way home and I went straight into the pool when I got home. After I got out of the pool, I was watching the kids swim and the RLS kicked in so much that I couldn't sit anymore. So, exercise doesn't help RLS for me. Also, I had to double dose Friday night to get to sleep.
Compression: I tried a heavy duty ACE type wrap on my "active" let yesterday afternoon to see if I could get a nap in. It seemed to be working then the "need to move" overcame me.....no nap.....again.

[SquirmingSusan]

It certainly sounds like you could be dealing with augmentation. Some people are able to manage the augmentation by switching from Requip to Mirapex for a while. That might be something to discuss with your doctor. Otherwise there a lots of medications that can be effective for RLS, but it can be difficult to find the right fit for the long term.

[whyyesiamspecial]

i'm up to 2mg a night. hopefully this works for a long while. my doc said i can go up to 4mg. if need be.