Help! Was doing ok on Requip for 3 months, but not now

[D4]

I'm new to the board and I just spent a couple hours reading posts. I don't feel so alone.

Here's my story. I'll try to be brief, but I think providing some details might help someone recognize something they experienced.

For about 15 years I talked to different doctors about my overwhelming fatigue. They'd test my thyroid every couple years and just say all working mothers are tired. I tried to explain that my exhaustion wasn't normal, but they tuned me out. Then, finally my asthma doctor asked me about fatigue. I told him of my sheer exhaustion after work and my frequent several hour 'coma-like' naps. Instead of ignoring it, he asked me lots of questions and gave me time to describe my exhaustion.

He scheduled a sleep study in April 2006. The diagnosis was PLMD and RLS. (I was aware of some leg movements while sleeping, because my dog would get mad and jump off the bed, but I wasn't aware of any leg movements during daytime.) I was thrilled to have a diagnosis.

He put me on Mirapex and I tried it for 2 days. The first day I felt sick and the second day I couldn't remember passwords at work, names of co-workers, couldn't concentrate, etc. He switched me to Requip. I had the starter pack and got up to .5 dosage. I felt 'blah' for 3 weeks. I did my job fine, but I didn't do much around the house. After hallucinating and seeing snakes in the yard while mowing one day (they were really sticks!) I called and said I needed something else.

He lowered my dosage. For 3 months, I took .375 mg each night and I described this drug as life-changing. No more coma naps and no more daytime exhaustion and my dog slept by my side all night! I also had energy to accomplish stuff around the house. My family saw the huge difference in me.

After 3 months on Requip, my legs started feeling creepy-crawly during the early evening. My doctor told me to take a little piece of Requip in the early evening to see if this helps. At first it did, but now the creepy-crawly feeling has started after lunch. It is very embarassing during meetings at work. Also, whenever the creepy-crawly feeling hits, I can't concentrate like normal. I work with spreadsheets and numbers all day long, so I need to be able to focus. This week I took a little bit of Requip after lunch each day, but didn't get any relief. (My doctor said he'd like me to get up to a higher dosage. But when I tried .5mg again, I didn't have any energy in the daytime, so I went back to the .375 dosage.)

I'm frustrated again, especially because now I know I can feel better. I felt great for 3 months and I want that feeling again. My legs never felt creepy-crawly before I started Requip and now it's a daily occurance. I scheduled an appointment with my doctor, but I have to wait 3 weeks.

Does anyone have advice? Has anyone experienced stuff like this before? Thanks!

[tazzer]

D4,

I'm glad you found us, and welcome, but then again sorry you have to be here. I know I am not a dr. but to me it sounds like augmentation. Try looking at some of the post concerning augmentation. Augmentation is when the med you are taking (such as requip makes your symptoms worse and more frequently or earlier in the day) there are alot more on here more experienced with the augmentation than i am. but i would suggest reading some of the post regarding it. if i can find some of the better ones i will put up another post showing you where they are. this rls really bites, so don't feel alone and anytime you need to vent or talk in the middle of the night there is usually someone online here. we are like a family here. so welcome to the family! i don't know your medical history but you might want to talk to your dr about taking what we call a "holiday" from your requip, stop taking it for a while, if you do that you may want to speak to your dr about a pain med while you are not taking the requip, i know i am not a dr, but this is the route alot of us take.

take care

dee

[tazzer]

ok i think ann says it best, here ya go all you need to know on augmentation. hope it helps.
dee

One of our new members emailed me and asked for info on augmentation. In case anyone else is not familiar with it, I thought I'd answer here so everyone can see it.

Simply put, augmentation is when your RLS gets worse - more intense or more frequent - when you are taking dopamine agonists like Requip, Mirapex, Sinemet, etc.

The cure? Stop the drug. This will reverse the augmentation most times, though not always. The sooner you stop the drug, the more likely the augmentation will reverse (and quickly). The longer you take the drug after augmentation starts, the greater the chances that the augmentation could be permanent.

What should you take next? If you've not taken another DA, start with a new one. If you augment of two DAs, do not take them anymore and switch to another class of drugs. According to the Mayo's Algorithm, you can try opioids, benzo's or anti-seizure meds if you cannot take the DAs. Anecdotally, it seems that many people who augment seem to do well on opioids.

What are the chances of getting augmentation? It's not really known as no studies have been done. Some say around 30 percent for Mirapex/Requip and at least 70% - though some say higher - for Sinemet.

How long does it take to augment? It is extremely variable. For some people, it is within a week. For others, it takes years. The average is thought to be at least a year to two years.

Since this is a risk, why should we take DAs to begin with? The rate of DAs success with RLS is quite high. Though some of us have side effects that preclude us from using them, the majority do not have these side effects and the DAs work well. Since it can take years to augment, and many people never do, they still remain a great choice.

Should a person even take Sinemet since the rate is so high? Only if you take it 4 days a week or less. It is fast acting, and you will not augment if you don't use it regularly. It's a great drug to take on plane trips, or to use in meetings.

[D4]

Thanks so much! Yes, my problem does sound like augmentation. It's extra frustrating because I was doing so well. I'll call my doctor to see if they can prescribe anything different for me before that appointment.

I'll also ask my doctor about Sinemet. The comment about it helping in meetings and on airplanes sounds useful to me. I'm like a little kid that can't sit still. I flew a few weeks ago and had terrible leg problems during the flights.

[tazzer]

i take sinemet, i don't take it everyday like the dr wants me to because it has such a high rate of augmentation. i do take it when i go on a long drive or if i am having a really bad day with my legs and the pain med is just not enough. the sinemet works pretty fast, usually in 30 minutes. i know how you feel about the weird dreams with the requip, been there done that, didn't have any hallucinations, but when they increased my dosage i nearly threw my toes up! ugh, i felt like i was pregnant again!! lol i didn't like the mirapex either. so i hope your dr helps you out.

good luck

dee

[D4]

What kind of doctor do most of you see? My pulmonary doctor that treats my asthma is the one that had me get the sleep study and prescribed the Requip.

[ViewsAskew]

Dee seems to have nailed it - augmentation. The sad thing is that most of us can diagnose it better than the docs . A lot of them do not even know it exists.

D4, please, please read about it - there are more posts about it. One is in the "sticky" post in the Pharma section. If you keep taking the Requip, your RLS could permanently worsen. You need to switch. Since you are on such a low dose of Requip, you might do well on Mirapex - you were probably just taking way too much for your system. You only need 1/3 the Mirapex of Requip. You might be able to take .125 and have it work well. The best part is that you could stop the Requip and start the Mirapex on the same day.

If that doesn't work, then you have to try something else. They just don't know much about PLMD, though. Not many meds help it - less than RLS. In the "sticky" on managing RLS, there are some links to articles about PLMD - you might want to start reading there.

Sorry you had to find us, but hope you can get the answers and help you need here.

[tazzer]

i see a neurologist d4

dee

[D4]

Here's an update: I called my doctor and talked to his nurse. She didn't relay my message very well because the response was to double the Requip dosage by taking a dose in the morning which I knew wouldn't work for me because Requip makes me feel dizzy and I have to go to bed. I didn't increase it and was able to get an appointment several days later.

He told me to stop Requip cold turkey and start 100 mg Neurontin. I had my worst night ever because my legs wouldn't stop moving. I think I was having horrible Requip withdrawal. I slept at most 2 hours.

After only 4 nights on Neurontin, I don't know what I think. I am sleeping very well, but I CANNOT get up in the morning. Other people have said morning grogginess is a side effect, but I'm like a brick. I'm only on 100mg. He said to increase it each week up to 300mg, but I don't need to do that.

I'm also having the most vivid dreams of my life. They are a blend of reality and fiction and I honestly can't separate them. I'm asking my family and coworkers questions each day to find out what is true and what isn't.

If you're on Neurontin, how do you wake up?

[ViewsAskew]

I wish I knew . Many people say it gets better over time - that you get used to it in a few weeks. I never did. I tried it three different times and at different doses. I always felt sooooo tired everyday.

[Hos]

huh, that is tough. I'm no doctor, but it seems that 100 mg of Neurontin should not cause that bad of side effects the next morning. I wonder if you took the med earlier in the night if it would still affect you as bad in the morning since the half life of the drug is 4-6 hours (I think.)

Here's a link showing that 300 mg starting dose for RLS is normal.
http://www.ncbi.nlm.nih.gov/entrez/quer ... t=Abstract

But, needless to say, if 100 mg is working then sounds like at least a temporary plan and maybe your body will get used to it soon, but why hurry to increase the dose to 300 mg? I have heard of ppl going to a Pulmonologist. Sort of odd since they're a lung doctor although still worth trying since they're in Internal Medicine. I think most go to GP, neurologists, or sleep specialists. Hey, if they work with you and are willing to learn, shoot, I'd go to a Veterinarian if they would work with me!

I take 1200 mg. of Neurontin and I might be getting some "brain fog" due to it but I don't think it causes me sleepiness. Some mornings though, I do get a cold wet rag and wash my face for a minute at work which sometimes wakes me up. Or, I might shut my office door and rest my eyes for a few minutes to help wake me up.

Keep hope alive.

[ctravel12]

Hi D4 I was just reading your post and am so sorry that you are having a rough time with rls. I too also took Requip and in the beginning it was fine and then all of a sudden I got 24/7 rls and very painful.

I finally went to see a neurologist and he weaned me off of requip and am now on 1mg of clonazapem and so far it is working good. I hope that you are getting some good relief.

I am sure that other members will offer some good advise too. Have you looked at the New to RLS "Managing RLS. There is some good info there and also the Mayo Clinic Algorithim has alot of good info to. You may want to copy this and bring it to your dr.

Please keep us posted on how you are doing. Have a nice restful evening.

[sugbrendas]

I couldn't take Requip or any of the other Parkinson's drugs.
I would call my primary,always got a nurse to tell me Dr @## says to go back on Sinamet.
Well,here's what i did. I marched my big butt in there everytime i was told that,of course with a appt.. and HMO's don't like all of those visits.I finally got sent to a specialist.

[ctravel12]

Hi Sugbrendas
]
Good for you. I feel the same way. I used to be on Requip and what a nightmare. I am also on 1mg of clonazapem and so far it is working good and have no intentions of getting off as long as it is for working for me. I guess like they say if it's not broke why fix it. Have a good day and am so glad that you are doing good.

[sugbrendas]

thanks charlene,and i guess were on the same med right? Isn't Klonopin another name for yours?
I'm very pleased with it, i almost gave up on it a couple of times but i was just having a episode that had nothing to do with my Klonopin and i'm not real sure what to call these episodes yet. But i stayed on them,the Dr would add another and after about a month when i was feeling very very sleepy all of the time and i knew my nighttime sleep was good i took my self off of the new med and continued on.
And i'm guessing i've been on Klonopin for way over 20 years now.