Requip and long term effects

[jmoore9784]

I have been living with RLS since I was about 8 years old. The first time I noticed it, I had been sick and in bed for about 5 days. The symptomes got worse through out my childhood, and much worse during adulthood.

As of this time, I have problems with it 24 hours a day every day. Going to movies, riding in a car, relaxing, and going to bed are not something that I look forward to. I am in pain most of the time, my legs jerk when I am attempting to relax, and I am sleep deprived.

I have been trying to live with this by taking large quantities of aspirin. My stomach is now a mess.

I gave up a month ago, and got some requip, which I cannot afford. I am sleeping through the night for the first time in about 10 years. I am taking 3 pills a day,and am worried about the long term effects of this drug.

[Neco]

While I can't speak to the long effects, you might want to inquire about any programs the company who makes Requip (pyhzer?) may be offering to help people who can't afford medication.

You can probably start by asking your physician or pharmacist


And lay off the OTC painkillers.. It just isn't worth it..

[ViewsAskew]

Hi Jan,

Welcome to our group.

This may help. . .this may not.

Requip - and any other drug taken for RLS - doesn't usually work for many years. While this is just an average and there are people far on either side of this number, the dopamine agonists (Requip, Mirapex), work for about 18 months or so. Again, just the average. One woman who joined here said she'd been on Mirapex for over ten years without problems. And I had problems with it in 7 days. So.

My point is that long-term side effects don't really apply. The side effects are only with us while we take them. Even people who have difficulty with addictive behavior while taking these drugs revert to normal as soon as they stop them.

To me, what it much harder, is making the switch every so often. Most of us find that we have to change our drugs every few months to every couple years. Not all of us, again, by many.

For now, see how it works. You can't manage your life and have 24/7 RLS as you already know. This is a life-long disorder and as of now, they don't know what causes it, let alone have a way to stop it. We don't have many choices.

Choices we do have are:

Changing diet - this does not work for all of us, but definitely works for some. The problem is that the same things don't work for all of us. Try eliminating sugar, caffeine, wheat, gluten, aspartame, alchohol. These seem to be the ones that more than one person has had success with.

Adding iron - many of us have low ferritin. Take this test at your docs (I HOPE he or she already offered). If he or she hasn't mentioned it, ask for it. Anything below 50 is considered too low for someone with RLS.

Getting right amount of exercise - many of us have to get some, but can't get too much. You may have to find the right groove for you. For me, I must walk, ride my bike, or swim at least 3-4 days a week. But, not for more than an hour. If I do more, I have more problems. That said, when I've stopped for awhile, I always have increased RLS for the first week or two when I start again.

Adding other minerals/supplements - these are far from universal, but some people have good luck with a variety of minerals and supplements. Read through the Non-pharma section for ideas. Amino acids have recently come up several times, but there is no proof that any of these work, and recently a study published said that magnesium does not work. . .yet we've had many people say it does. Could be they didn't really have RLS, could be placebo effect, could be that the study is flawed.

Welcome again. I hope you find what you need here. Reading old posts, reading sticky posts in each section, taking links to other sites. . .these will help the most. Because they will provide you with the knowledge you need to advocate for yourself and be sure you're making the right decisions.

[jmoore9784]

I didn't realize that Requip wouldn't continue to work.

I have adjusted my diet, take vitamines, and exercise as much as I am able. Right now, I am just enjoying being able to relax. It's such a blessing! Maybe they will find what causes this condition and find a med that will work long term.

[SquirmingSusan]

Jan, don't give up on the Requip yet. It may work for many years. It's just important to know that if it does stop working, or if you develop augmentation, that there are other options for treatment.

[becat]

I agree with Susan,
The first rule I learned here, was that everyone is different.

If Requip is working, enjoy the ride while you can, even if that means it goes on for years.

I heard from several people that have been doing well with their same meds for years.

Sounds like it is working, that is all we all hope for.

Zach is right, your family GP or the RLS doc can help you with the tons of paper work to prove you need the meds and can't afford them. It's a hassle, but might very well be worth it. Remember that you will have to show proof that you can't afford it though.
Glad to have you here.
Lynne

[ViewsAskew]

I didn't realize that Requip wouldn't continue to work.

I have adjusted my diet, take vitamines, and exercise as much as I am able. Right now, I am just enjoying being able to relax. It's such a blessing! Maybe they will find what causes this condition and find a med that will work long term.

I was hesitant to write that because I didn't want to scare you. . .I just wanted you to have more information than what your doctor may have given you. That allows you to make better decisions.

Enjoy that blessing! And, don't worry about how long - it could be several years. Hope that it is. And don't worry about side effects (long term). It's not really any issue.

[jmoore9784]

Actually, the doctor that I went to just gave me the meds, and answered no questions. He said that he didn't know much about RLS. So, any information is helpful.

It has just been so wonderful to be able to sit down and relax, and to sleep through the night that I am very grateful.

Thanks everyone!

[Hap]

I have been taking Requip now for about two yrs, was taken off Sinemet by my Neurologist who thoughts were I was becoming immune. One bad thing I found about Requip, if ya catch a cold or sorts, ya can't take over the counter meds, it has a bad reaction with Requip, like not being on it at all.

[Sojourner]

Jan, Please become familiar with the term/concept of augmentation. You will find information about this in the stickies. You can also do a search for the word as well as reading many of the previous posts regarding requip and mirapex. Best wishes.

[jmoore9784]

I have experienced more pain taking Requip lately. Not only does my back hurt, but all my joints do as well. Very strange. My doctor gave me a sample of Mirapex. It seems to last longer and I am able to take a lower dose than with Requip. The doc's suggestion was that I take Klonopin in the evening and Mirapex in the day time. Before I do this, I wanted to know if anyone else has tried this. Does this make sense?

[mackjergens]

MOST people with RLS should NOT take the OTC cold meds period. I noticed someone talking about taking requip and getting a cold and not being able to take OTC cold meds.

According to the information about RLS most all OTC cold meds contain antihistimines and will usually cause RLS to kick in big time! So even if you arent taking Requip, please be sure and read the info about RLS and OTC cold meds, or even OTC sleep aids like Tylenol PM, they all have antihistimines in them, and will cause great misery with RLSer's! I once tried taking Tylenol PM and walked the floor and cried all night due to how it increase my rls! So PLEASE read and be informed of all the OTC meds that can and most often will increase your rls!

[ViewsAskew]

I have experienced more pain taking Requip lately. Not only does my back hurt, but all my joints do as well. Very strange. My doctor gave me a sample of Mirapex. It seems to last longer and I am able to take a lower dose than with Requip. The doc's suggestion was that I take Klonopin in the evening and Mirapex in the day time. Before I do this, I wanted to know if anyone else has tried this. Does this make sense?

You can try it. We all find different things that work. While Klonopin helps people fall asleep, it's not all that effective at helping RLS is some people. Do you know if you can take it at night without anything else and have it be effective? If not, try it and see. You'll know pretty quickly if it works or not.

[jmoore9784]

Thanks for advise.

I am confused by all the meds out there. I was attacked in my classroom several times fro the students of the long term sub next door to me a few years ago. I ended up going out on disability due to depression and full blown fear of my classroom. I was put on paxil, wellbutrin, zyprexa and trazodone. It was after I went off the meds that my RLS started acting up 24/7. Before then it was only at night.

I don't want to make things worse by taking another med. On the other hand, I am in pain, my legs and arms jump and I cannot sit down for more than a few minutes without taking something.

I now understand that I need to take control over what I take. I just need to get a handle on what the meds do and how they affect me.

Thank you,

Jan

[Sojourner]

Jan, Unfortunately, that is one of the mysteries with rls. That is, we all react differently to medications. What works for one doesn't work for another--where have I heard that before. What makes things worse for one doesn't make things worse for another...ad infinitum.

Probably the best things all of us can do is to continue to read lots of posts and information in the stickies, the rls.org site, etc. to get a feel for what meds definitely seem to be more of a problem than not (i.e. the class of antidepressants) and let that be sort of a guide. I think another good piece of advice is that usually as soon as a med begins worsening things it is often a good sign to reduce or stop the medication or at a minimum seek more information/direction from you doctor or other souces. However, any of this is made that much more difficult when multiple medications are involved. In my opinion, determining how valuable a particular med is for any one person is somewhat of a crapshoot. Sadly, this is such a abominal condition that it puts many of us in the position of having to try something even though the outcomes are dubious or potentially detrimental.