Requip Hell! :(

daniellekostresh · Post by **daniellekostresh** » Tue Nov 20, 2007 6:03 pm

Well, to start out I'm new. I'm 19 years old (fairly young I know) and ever since I can remember as a child I have always had the urge to move my legs, and it has always kept me up at night. With me I always feel the need to stretch or move otherwise...I squirm and it really is awful, its so hard to explain to people without the disease.

So I went to my family dr who I told and she blew me off completely! In the end I just dealt with it and felt like perhaps I didnt have a problem and I was insane. But then I went to see a new Doctor after the problem had gotten so bad I wasn't sleeping for days in a row due to my legs and he prescribed me Requip. Oh my, I did not know the hell I was in for.

IT IS AWFUL! I don't sleep, ever. I stay up literally all night staring at the wall while fidgeting, crying, or moving my legs until they hurt from moving them so much. The last 3 nights I have not slept at all, so this morning I finally sucked it up and called my Dr and left a message with his nurse.

I should add I started with the sample pack and worked my way up to 1mg.

What medications should I ask for? I do not think this Doctor knows too much about RLS and I want to get my point across that I am seriously in pain and I am lacking sleep and need his help.

SquirmingSusan · Post by **SquirmingSusan** » Tue Nov 20, 2007 6:21 pm

Welcome to the forum, Danielle. So sorry to hear that you're having so many problems with RLS.

It sounds like you're already having augmentation with the Requip. If you search the forum, you'll find that a lot of us have dealt with that. Augmentation is when the medication, like Requip or Mirapex, cause a worsening of the symptoms.

Did your doctor give you the starter pack of Requip, or did he just prescribe a set dosage? It seems like usually they just hand you a starter pack and hope that it works. And doctors often seem to think that "the more the better" when it comes to dosing. Many of us have found that those drugs are best taken in the tiniest dosage possible, or they cause augmentation or rebound.

Please talk to your doctor ASAP about stopping the Requip. You will probably need to take an opioid painkiller for a few weeks until your body gets back to the level of RLS you had before you took the Requip. It can be difficult to get a doctor to prescribe painkillers, though. But you can always go to the ER.

One thing you're going to want to do is educate yourself. At the top of the "New to RLS" forum there are sticky posts. Please read through them, they have a wealth of information. Somewhere in there is a link to the "Mayo clinic Algorithm," please read that and give a copy to the doctor. If the doctor refuses to read it, you'll probably need a different doctor, but deal with that if it happens.

Hang in there, and keep us posted on how you're doing. It can take time to get the RLS under control, but it can be done.

daniellekostresh · Post by **daniellekostresh** » Tue Nov 20, 2007 6:28 pm

I was given the starter pack and made my way up to 1mg and then I was given 5 refills of 1mg pills which I havent even filled because of the amount of pain I'm already in, I see no point in continuing this drug considering the hell its put me through in only 2 weeks. I really do hope my Doctor will consider a painkiller because the pain in my legs is awful, and as many people have said I do too notice that when I've had Hydrocodone in the past that my RLS isnt so bad that night when I was taking it (for wisdom teeth most recently) and I actually slept 10 hour nights, I'd take 5 hours right now over this not sleeping nonsense

!

Sojourner · Post by **Sojourner** » Wed Nov 21, 2007 4:55 am

d, it's good you new doc at least prescribed something for you which suggests he perhaps knows something about rls. I certainly agree that calling him to report you symptom is something you should do. As far as meds to consider, Mmmmmm. If this is your first med or rls, your doc may be reluctant to "jump into the opiods." But, maybe given your current circumstances he might consider this in the short term to help you get by and through the spot you are in. If your new doc seems receptive to you asking questions, talking, and listening for a bit I might ask him about the course of treatment he has recommended to others in the past, how he handles things if meds don't work etc. In the course you might ask him if he has every prescribed vidodin or ultram (another common med that works for many) and his concerns about this or any meds. I guess what I'm saying is that, if your doc seems willing, sometimes by talking expressing your concerns and getting his, you may be able to lay the foundation for treatment. I certainly agree with reading and educating yourself. That way, you can direct conversations and think a little more easily in the office. Of course, if this soft approach does not work you may have to be a little more direct at some point. Have you tried Ultram?

M.

KBear · Post by **KBear** » Wed Nov 21, 2007 3:44 pm

Hang in there Danielle, it will get better!

Learn as much as you can about RLS. The Mayo Clinic article attached below in my signature line is a good place to start. Your docctor shoiuld be able to prescribe something to help you sleep whether it's an opiate or a sleeping pill. Keep us posted.

daniellekostresh · Post by **daniellekostresh** » Wed Nov 21, 2007 4:43 pm

M:

I have had Ultram in the past for other things but I do not recall how it helped my RLS. I have a few Hydrocodone I got from my Mom last night so I could finally sleep, I work with her and she could see how exhausted I was and how much pain I was in so she gave me half a 5/500 and I took the other half before I fell asleep and OH MY GOD! I slept 8 hours and I'm refreshed and alert and my eyes don't hurt! Its amazing. I did experience I think a little more twitching in the night but it wasn't enough to wake me up, I noticed it as I dozed off. I did not wake up with an attack in my legs and I feel great this morning. I am unsure of if I want to tell my Doctor due to the fact I don't want him thinking I'm "drug seeking" and that I just want narcotics from him. I really just want to find help for this problem. I will bring up Ultram too, thank you for all the wonderful advice!

Kathy:

I printed out the Mayo Clinic article, read it and highlighted things I felt were important. I plan on bringing it into my appt today at 10am and I want to inform the Doctor that I do not want him to feel undermined or that I think I know more than him, I just think this is good for me and for me to understand what methods of treatment might be best for me so me and him can work as a team to fixing this problem. I really do hope he can give me something to help with sleeping dear god I cannot stay up another 3 nights its just unbearable at this point. I did take Hydrocodone last night and it was extremely helpful, I took half a 5/500 and then the other half later that evening, I havent slept that well in months! Thank you so much for all the help!

SquirmingSusan · Post by **SquirmingSusan** » Wed Nov 21, 2007 9:08 pm

Danielle,

Just keep in mind that it can take a few weeks for severe augmentation to settle down, and your RLS to go back to previous levels. during those few weeks it usually takes an opioid painkiller to keep the RLS away.

After things settle back down, then there are other options for treatment.

So maybe you could tell your doctor that RIGHT NOW you need something strong to get your through the rough patch, and you'll be willing to try alternatives once things settle down.

I think it's documented by doctors somewhere that for severe augmentation, you need an opioid painkiller. Maybe Dr. Buchfuhrer's website (We call him Dr. B). Here's a link to his site: http://www.rlshelp.org It helps to have some kind of page searching tool when you read his site, because the pages are so long. In my browser (Firefox) there is a tool, under "Edit" that allows me to "find in page".

You can also email Dr. B from his site. There is a "contact us" button that will bring up an email. He answers his own emails, and usually the same day. It might help if you bring in an email from him saying that you need extra help right now.

Best wishes with it.

jiggyanne · Post by **jiggyanne** » Mon Nov 26, 2007 5:51 pm

Hi Danielle,

I had exactly the same problem as you when I first started Requip and it was the sample package, too. I started with .25 mg for 5 days, went to .5 mg for another 5 days, then started the 1 mg. Holy heck! It was awful, so I quit and called it an evil pill.

After a while I HAD to do something, so called the doctor again and we tried something different. I took the .25 mg for about 3 weeks, until they didn't work anymore. Did the same with the .5 mg, three weeks. When I finally went to the 1 mg it was fine, no problems! I guess I just needed to proceed more slowly.

Unfortunately, your body gets used to this stuff and I am now up to 2 mg (doctor's dose) and it's starting to not work again. Recently, I've been taking Klonopin along with the Requip. Both of those have been prescribed for me, so I'm not experimenting. This combination seems to be working very well.

Good luck. I sympathize. I've had RLS as long as you have. The first bad episode that I remember was when I was 14 years old, but I know I had it before that. My mother had it, my kids have it and now it's showing up in my grandchildren.

Anne

Aiken · Post by **Aiken** » Wed Nov 28, 2007 3:54 am

I know some of the mirapex/requip oldtimers are reading this thread and I have a related question for them...

Do drug holidays work for DA's? Can you go off them, even if it takes a long time, and eventually get rid of the tolerance to them that you have built up?

I ask because the Discovery channel CME program included one of the doctors saying that the dopamine system is plastic, by which he meant that if you do something bad to it and then stop doing the bad thing, it can bounce back. From what I've read on these forums, that didn't sound 100% accurate, but the doctors on the CME program were mostly pretty bang-on, so I got curious.

I'd be a lot more willing to try a DA if it weren't for fear of trading permanent changes for temporary gains. My doctor would be a lot happier with me, too.

Post by **ViewsAskew** » Wed Nov 28, 2007 7:16 am

As always, take what I'm about to say as sheer speculation from someone who has no medical background at all....

We have many people on this forum of people who has difficulty with one DA only to have luck with the other. Charlene is a great example - had problems with Requip, waited awhile, then took a much smaller dose of Mirapex and has used it for several months now.

But, it's the one's that had difficulty that make you go, "But....!" And, there are a few of us for whom the DAs permanently changed how RLS manifests, particularly in relation to PLMD.

What's interesting to me, is that best I can tell all of us whose RLS permanently worsened also augmented (not other difficulties or side effects, but augmentation specifically). And, most of us were kept augmented for a period of time. There are only two people, if I remember (there was a post about it awhile back where I asked about it), who augmented quickly but stopped the med quickly, too, yet the RLS remained increased. One of those people augmented on an anti-depressant, not a DA. I can't remember the details of the other.

I don't know how long each was augmented before stopping the DA. For me, it was around 2 years (I augmented immediately and was kept on it around 2 years). It's been 2.5 years since I stopped the Mirapex and I can safely say that the increase is permanent.

I still have a strong suspicion that my RLS and PLMD would have gone back to its prior level had I stopped the Mirapex quickly. By quickly...not sure what I mean. A few days? A few weeks? Even a few months? I don't know. But I'd guess that you'd at least have a couple of weeks, if not longer.

So, it really seems that the vast majority of people could take the DAs, know the symptoms of augmentation, and then stop as soon as the symptoms show up, and be no worse for it. Of course, this isn't scientific at all....it's just anecdotal based on people's accounts here and other RLS forums.

SquirmingSusan · Post by **SquirmingSusan** » Wed Nov 28, 2007 7:54 am

I augmented within 3 weeks, maybe less, and it was very, very severe. It got so bad that about an hour or so after taking Requip, I started having terrible leg pain and plmd. I took my pill one night and after the symptoms went wild decided to never take it again. I didn't, and it's almost a year later. Most of the symptoms have returned to previous levels except the PLMD, which is still really bad even when I'm awake.

Had I known what I know now, I would have never raised the dose of the Requip beyond the lowest starting dose. Who knows, maybe I would still be taking it.

The best thing about the DAs, in my opinion, is that for some of us, they make it possible to sleep during "normal" hours and to function during the day. I had bad side effects from the Requip - stuffed sinuses, nausea, and chills, but I would wrap up in my blanket, shiver for a while, then go to sleep until morning.

So now I'm trying a teeny dose of Mirapex and it seems to help. I'm thinking of actually trying half of the lowest dosage instead of 1/4 and seeing if it helps more. If anything gets weird in my body, though, I'm backing down again.

Bottom line - It's up to you. But if you take these meds, stay on the lowest possible dose that helps, and watch for augmentation.

cornelia · Post by **cornelia** » Wed Nov 28, 2007 11:39 am

From dr B's lettes I have gathered that DA's will start working again. Only, is it wise to do after augmentation? Is it better in that case to not start again on Mirapex or Requip and try the Neupro patch, even if your RLS is not 24/7?

Corrie

KBear · Post by **KBear** » Wed Nov 28, 2007 3:02 pm

It's a personal decision, some people are willing to try DA's again, I wouldn't touch them. I don't like to mess around with brain chemistry there are too many anecdotal stories from people whose RLS became permenantly worse after using DA's.

jiggyanne · Post by **jiggyanne** » Wed Nov 28, 2007 4:23 pm

I DID start the Requip again after having a really bad reaction to it. I waited several weeks and HAD to do something. My legs were driving me crazy! I think I said before that I progressed more slowly with the increases and that did work. Now, I'm up to 2 mg of Requip and have to take the clonazepam (Klonopin) to make that dose work. Everyone is different, though.

Anne - jitterbugging for fun, now.

SquirmingSusan · Post by **SquirmingSusan** » Wed Nov 28, 2007 4:29 pm

The reason I'm trying a DA again is because they do seem to help with the whole circadian rhythm thing. At least for me they really do seem to help. And I'm desperate to be able to function during the day so I can work again.

And Corrie, if the Mirapex keeps working without giving me problems, I may ask to try the Neupro patch. Although, from another forum that I read on Yahoo, people with RLS seem to have a lot of problems with that as well.

Time will tell on the patch I guess. I don't believe the dosages come small enough for RLS yet. They are only approved for Parkinson's.