My neurologist just put me on Requip as a hopeful solution for my RLS symptoms. I've read a bit on this board about the failure of Requip to treat other people's RLS
What I would like to know is - how many people have actually received a good deal of relief from the RLS since they started using Requip, and would recommend other RLS sufferers to try it out?
Any REAL success with Requip?
Once I got on the right dosage of Requip for me (.375mg/day), I had about 3 months of pure heaven. I could sleep and then get up for work without a problem. I had energy to do everything I wanted to. Basically, I was myself.
Then I augmented badly and I've tried at least a half dozen medicines since then and nothing works for me without horrible side effects and daytime exhaustion. Tonight I'm trying the next drug.
I say try it, because it might work for you. Just be aware of the warning signs of augmentation. When I augmented it was painful and my doctor just wanted to up the dosage. I found this board and the wonderful people here quickly identified my problem.
I've switched to a neurologist since then.
Then I augmented badly and I've tried at least a half dozen medicines since then and nothing works for me without horrible side effects and daytime exhaustion. Tonight I'm trying the next drug.
I say try it, because it might work for you. Just be aware of the warning signs of augmentation. When I augmented it was painful and my doctor just wanted to up the dosage. I found this board and the wonderful people here quickly identified my problem.
I've switched to a neurologist since then.
any real success with Requip?
Hi estonb and welcome to this group. Some people do good on Requip. It did not agree with me; however remember what works for you may not work for others. The only thing I can suggest, as I do not have any medical backgroung, is try it and see how it goes. What is the mg he started you on? If somehow it does not work for you, then I would see your neurologist and see what else you can take. Alot of it is trial and error.
Like I am taking clonazapem and some do not like it; however it works for me and that is the most important thing to remember. Everybody's body reacts to different meds and sometimes you may have to take a cocktail of meds to see what works for you.
Good luck and please keep us posted on how you are doing.
Estonb, with being new to the board try and read alot of the old and new posts and read the form New to RLS "Managing RLS" there is an excellent article from the Mayo Clinic Algorithm. It may be worthwhile to print it out and bring it to your dr
I hope that this has been some help to you.
Like I am taking clonazapem and some do not like it; however it works for me and that is the most important thing to remember. Everybody's body reacts to different meds and sometimes you may have to take a cocktail of meds to see what works for you.
Good luck and please keep us posted on how you are doing.
Estonb, with being new to the board try and read alot of the old and new posts and read the form New to RLS "Managing RLS" there is an excellent article from the Mayo Clinic Algorithm. It may be worthwhile to print it out and bring it to your dr
I hope that this has been some help to you.
Last edited by ctravel12 on Tue Feb 20, 2007 2:51 am, edited 1 time in total.
Charlene
Taking one day at a time
Taking one day at a time
-
ViewsAskew
- Moderator
- Posts: 16590
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
This is a great board . . . but we are not indicative of the majority of people. Most people go to their docs, get a script, and all is well.
The rest of us end up here
Requip works for at least 70% of those who take it, and in some studies works for 100%. Of course, they limit the studies to certain people who meet specific criteria, and many of us on this board wouldn't be allowed. So, who knows what the actual percent would be, but I'd still say it's probably 60-75% overall. Initially.
Who is works for over time, is a different issue. That is a smaller percentage. But, in my eyes, it's still worth trying. If you get 6 months, excellent. It's 6 months you weren't miserable. If you get three years, whoo-hoo - do a happy dance.
More seriously, I would try it. Just try it slowly, don't necessarily follow their instructions - increase only until your RLS goes away, not until you reach 2 mg. Heck, it might work at .5 mg.
The rest of us end up here
Requip works for at least 70% of those who take it, and in some studies works for 100%. Of course, they limit the studies to certain people who meet specific criteria, and many of us on this board wouldn't be allowed. So, who knows what the actual percent would be, but I'd still say it's probably 60-75% overall. Initially.
Who is works for over time, is a different issue. That is a smaller percentage. But, in my eyes, it's still worth trying. If you get 6 months, excellent. It's 6 months you weren't miserable. If you get three years, whoo-hoo - do a happy dance.
More seriously, I would try it. Just try it slowly, don't necessarily follow their instructions - increase only until your RLS goes away, not until you reach 2 mg. Heck, it might work at .5 mg.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Well, when it was first approved, I had to wait until I was finished breast-feeding to try it, but I was really excited. My doc said it had an 80% SUCCESS rate, so I had high hopes.
Well after 2 and a half days of requip, I wanted to jump out a window, the symptoms had gotten so bad. 24 hours a day, severe symptoms with pain. He said to stop immediately and come back in in a couple of weeks when thing had calmed down, and we would try something else.
Well, get THIS--when I went back in, he said that there has been an 80% FAILURE rate. I told him that I thought he had told me the opposite before and he apologized for the mistake and it was definately not helping the vast majority of the patients they see at this very large military medical facility.
So I don't know. And by the way, I still have daytime symptoms and pain, which I never had before I took the Requip. And it is 6 months later.
So now I'm on MS contin and it works perfectly and I only have to take it twice a day. I could not be happier with this therapy. I was a little freaked out at first, but I haven't felt this normal in years. All the anxiety is gone. I wake up and take the pill and get on with my life, like I don't even have RLS. No more spacing out my meds, worried I will run out...I'm just so grateful. I was starting to believe there was nothing that was going to help me.
Anyway, I hope the requip works for you. But if it doesn't there is other stuff. Hope this helps. keep us posted.
Dana
Well after 2 and a half days of requip, I wanted to jump out a window, the symptoms had gotten so bad. 24 hours a day, severe symptoms with pain. He said to stop immediately and come back in in a couple of weeks when thing had calmed down, and we would try something else.
Well, get THIS--when I went back in, he said that there has been an 80% FAILURE rate. I told him that I thought he had told me the opposite before and he apologized for the mistake and it was definately not helping the vast majority of the patients they see at this very large military medical facility.
So I don't know. And by the way, I still have daytime symptoms and pain, which I never had before I took the Requip. And it is 6 months later.
So now I'm on MS contin and it works perfectly and I only have to take it twice a day. I could not be happier with this therapy. I was a little freaked out at first, but I haven't felt this normal in years. All the anxiety is gone. I wake up and take the pill and get on with my life, like I don't even have RLS. No more spacing out my meds, worried I will run out...I'm just so grateful. I was starting to believe there was nothing that was going to help me.
Anyway, I hope the requip works for you. But if it doesn't there is other stuff. Hope this helps. keep us posted.
Dana
dv wrote:So now I'm on MS contin and it works perfectly and I only have to take it twice a day. I could not be happier with this therapy. I was a little freaked out at first, but I haven't felt this normal in years. All the anxiety is gone. I wake up and take the pill and get on with my life, like I don't even have RLS. No more spacing out my meds, worried I will run out...I'm just so grateful. I was starting to believe there was nothing that was going to help me.
Anyway, I hope the requip works for you. But if it doesn't there is other stuff. Hope this helps. keep us posted
Dana
Hi Dana I am so glad that you found a med that helps your rls. Please keep us posted on how you are doing. It is so good to hear that someone is finally getting some much needed relief
Charlene
Taking one day at a time
Taking one day at a time
-
ViewsAskew
- Moderator
- Posts: 16590
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
dv wrote:Well, get THIS--when I went back in, he said that there has been an 80% FAILURE rate. I told him that I thought he had told me the opposite before and he apologized for the mistake and it was definately not helping the vast majority of the patients they see at this very large military medical facility.
Wow. I have never heard that from any doctor. I wonder if there is something about the population he treats that makes it not as likely to work. The studies I've seen have all lasted about 3 months; there are many of them, and none of them had success rates under 70%.
Of course, there are many of us for whom these drugs do not work, cause aumentation, or side effects we just can't tolerate. Still, they do seem a good starting place for many.
On a side note, I wonder what those of us who can't take them have in common. . .if we knew ahead of time, then that population could bypass them.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Ann, I was talking to my brother about this. He is a general surgeon and his wife is a pharmaceutical rep.
I wondered why the actual results seem to be different than the studies are claiming and he said that didn't suprise him at all, or his wife. The studies are funded by the drug manufacturer and can be manipulated to show success when actually, the drugs may not work.
This is sometimes where law suits come in later down the road.
I wonder if the Requip manufacturer is not counting those who have augmentation until a couple of days later, as failures. Or they could be counting people who say their symptoms are 5% improved, as successes.
This happened not too long ago with off label uses for neurontin. It was different in the fact that the FDA never approved it for use in all those other off label uses, but the reps were touting all kinds of research saying it worked for just about everything. Google Neurontin and lawsuits and you may be able to be involved in a class-action if you were on it for RLS and it caused you any harm...
Now, I know that for the FDA to approve it, they had to have some success,(It's not the same case as neurontin) I'm just wondering if it is indeed, the amount of success they claim. Dr. B's book says, they work on most people initially, but the augmentation rate has not yet been established. WHY???
It would be so easy to document, and research since they already have the people there, taking the meds...I'm sure they know, they just don't want it published. Well, I should say I think anyway...I don't know anything. I'm just getting more skeptical of the industry in general.
As far as a special population at Peterson Air Force Base, no, I don't think that's it. Most of the folks are just regular people. There are some who may have been to war and been exposed to nerve gas or something like that, but most of those people are down at Fort Carson, not Peterson. Most of us are spouses, retired or active duty administration, not combat related.
Oh, I also got that information from a civilian "specialist" in town, not that exact number, but just that it wasn't as helpful in as many cases as you would think, from all the advertising...She was on the foundation website. But she wasn't as helpful as I had hoped , so I went back to my doc on base...
Anyway, I don't know if it's 80% or what, I just thought that was interesting and made me feel less of an "oddity" for failing that med!
Dana
I wondered why the actual results seem to be different than the studies are claiming and he said that didn't suprise him at all, or his wife. The studies are funded by the drug manufacturer and can be manipulated to show success when actually, the drugs may not work.
This is sometimes where law suits come in later down the road.
I wonder if the Requip manufacturer is not counting those who have augmentation until a couple of days later, as failures. Or they could be counting people who say their symptoms are 5% improved, as successes.
This happened not too long ago with off label uses for neurontin. It was different in the fact that the FDA never approved it for use in all those other off label uses, but the reps were touting all kinds of research saying it worked for just about everything. Google Neurontin and lawsuits and you may be able to be involved in a class-action if you were on it for RLS and it caused you any harm...
Now, I know that for the FDA to approve it, they had to have some success,(It's not the same case as neurontin) I'm just wondering if it is indeed, the amount of success they claim. Dr. B's book says, they work on most people initially, but the augmentation rate has not yet been established. WHY???
It would be so easy to document, and research since they already have the people there, taking the meds...I'm sure they know, they just don't want it published. Well, I should say I think anyway...I don't know anything. I'm just getting more skeptical of the industry in general.
As far as a special population at Peterson Air Force Base, no, I don't think that's it. Most of the folks are just regular people. There are some who may have been to war and been exposed to nerve gas or something like that, but most of those people are down at Fort Carson, not Peterson. Most of us are spouses, retired or active duty administration, not combat related.
Oh, I also got that information from a civilian "specialist" in town, not that exact number, but just that it wasn't as helpful in as many cases as you would think, from all the advertising...She was on the foundation website. But she wasn't as helpful as I had hoped , so I went back to my doc on base...
Anyway, I don't know if it's 80% or what, I just thought that was interesting and made me feel less of an "oddity" for failing that med!
Dana
-
ViewsAskew
- Moderator
- Posts: 16590
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Agreed.
But, I've talked a lot to the the primary docs in our field during the RLS conferences and through email - Buchfurer, Rye, Allen, etc - and they have not had this experience. That is what interests me. They find that the DAs are still the best first choice (for daily, bothersome RLS). So, what is different about this guy's practice or patients?
Augmentation has not been established because the majority of people augment outside of the terms of the studies. They have run for three months (with an exception here and there). With the two non-ergot DAs, most doctors that present at the RLS Foundation conferences find that the average to augmentation (just loosely based on their experiences) is close to 16 months. Sure, a few of us have it much faster, but most are not. So, they don't show up in these studies. Studies ARE needed; and that's a difficult proposition. Funding a long-term study about augmentation will take a lot of money. It would need to go on for at least five years, I would think, as we have patients on the DAs for that long without any augmentation. We had someone here recently who had been on Mirapex for ten years without any augmentation. A good study will hopefully tell us which patients are likely to augment, so maybe we can do better screening ahead of time, greatly reducing the rate.
The RLSF operates on a shoestring, trying to fund as much as they can, but they just don't take in enough to fund everything that is needed. So, this is my plea - if anyone here reading this has the means but has not yet donated, please do so.
But, I've talked a lot to the the primary docs in our field during the RLS conferences and through email - Buchfurer, Rye, Allen, etc - and they have not had this experience. That is what interests me. They find that the DAs are still the best first choice (for daily, bothersome RLS). So, what is different about this guy's practice or patients?
Augmentation has not been established because the majority of people augment outside of the terms of the studies. They have run for three months (with an exception here and there). With the two non-ergot DAs, most doctors that present at the RLS Foundation conferences find that the average to augmentation (just loosely based on their experiences) is close to 16 months. Sure, a few of us have it much faster, but most are not. So, they don't show up in these studies. Studies ARE needed; and that's a difficult proposition. Funding a long-term study about augmentation will take a lot of money. It would need to go on for at least five years, I would think, as we have patients on the DAs for that long without any augmentation. We had someone here recently who had been on Mirapex for ten years without any augmentation. A good study will hopefully tell us which patients are likely to augment, so maybe we can do better screening ahead of time, greatly reducing the rate.
The RLSF operates on a shoestring, trying to fund as much as they can, but they just don't take in enough to fund everything that is needed. So, this is my plea - if anyone here reading this has the means but has not yet donated, please do so.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
any real success with requip?
You can count on me as I do send in donations.
Charlene
Taking one day at a time
Taking one day at a time
Requip and Augmentation
It's me again and I just had to say something about Requip/augmentation and Neurontin. I was put on Neurontin after my 1st back surgery in November 2002. That stopped the RLS right away together with what I was taking at the time Parlodel. After the 2nd back surgeon a year later the Parlodel was not working.
Yes I was on oxycondine and oxycodone(sp) and 600mg's of Neurontin 5 times a day. But the pardolel was not working so went to a Neuro Dr and he changed me over to Requip and it had just been approved for RLS.
I ended up taking it and still do 1mg - 6 times a day but cut the neurontin back to 300mg's 5 times a day. Later I stopped all Pain meds because of the serve dry eyes ( see earlier Post). I have also had 2 more back surgeries and a lot of PT in and out the the heated pool.
Last May I had the rods and screws taken out of my lower back and thought that would be the end of my back pain - wrong. I should mention that I am 70 years old and I know I will always have some back pain.
Then I started waking up with RLS and hadn't done that before. They seem to be more like all day and then I realized that it had to be augmentation from the requip and neurontin. I just felt like I was all over the page and didn't know which way to go.
Well last Tuesday I got roxicodone 5mg's 4 times a day for my back pain and it is helping some. But I am wondering if I am getting too much requip and it's the cause of the augmentation after taking it for 3 yrs(?).
I am waiting to hear from my surgeon about my back and the x-ray's I sent him this week. I am also seeing my regular dr next Tuesday and will tell him I want to stop my Pavil and start Wellbuton. I may also see how he feels about stoping the requip and going back to my parlodel. When I was taking that I never had augmentation.
I also take clonazapem 2mg's at night. And like they say what works for me may not work for others so on. But I have been on requip for along time and 6 a day so maybe it's time to check it out with the augmentation. That is the problem with the RLS, you find something that works and then bingo it stops. I will keep you all posted on the surgeon and what he has to say and if I get to stay on the pain meds. That might be the reason my legs have settled down also.
I have been to the chat room but no one is there
.....Jeannie
Yes I was on oxycondine and oxycodone(sp) and 600mg's of Neurontin 5 times a day. But the pardolel was not working so went to a Neuro Dr and he changed me over to Requip and it had just been approved for RLS.
I ended up taking it and still do 1mg - 6 times a day but cut the neurontin back to 300mg's 5 times a day. Later I stopped all Pain meds because of the serve dry eyes ( see earlier Post). I have also had 2 more back surgeries and a lot of PT in and out the the heated pool.
Last May I had the rods and screws taken out of my lower back and thought that would be the end of my back pain - wrong. I should mention that I am 70 years old and I know I will always have some back pain.
Then I started waking up with RLS and hadn't done that before. They seem to be more like all day and then I realized that it had to be augmentation from the requip and neurontin. I just felt like I was all over the page and didn't know which way to go.
Well last Tuesday I got roxicodone 5mg's 4 times a day for my back pain and it is helping some. But I am wondering if I am getting too much requip and it's the cause of the augmentation after taking it for 3 yrs(?).
I am waiting to hear from my surgeon about my back and the x-ray's I sent him this week. I am also seeing my regular dr next Tuesday and will tell him I want to stop my Pavil and start Wellbuton. I may also see how he feels about stoping the requip and going back to my parlodel. When I was taking that I never had augmentation.
I also take clonazapem 2mg's at night. And like they say what works for me may not work for others so on. But I have been on requip for along time and 6 a day so maybe it's time to check it out with the augmentation. That is the problem with the RLS, you find something that works and then bingo it stops. I will keep you all posted on the surgeon and what he has to say and if I get to stay on the pain meds. That might be the reason my legs have settled down also.
I have been to the chat room but no one is there
.....Jeannieany real success with requip?
Hi Jeannie When reading your post, it does seem you are augmenting from the requip. I would definitely talk to your dr and see what else he can give you. I know you said when you stopped all the meds the dry eyes was not a problem. Can you take any other type of meds that will not cause your dry eye and also help with your rls.
I hope that you hear from your surgeon soon and keep us posted, which you are good about doing.
Is the clonazapem working for you? It is so true what you say what works for one may not work for another one.
I hope that you hear from your surgeon soon and keep us posted, which you are good about doing.
Is the clonazapem working for you? It is so true what you say what works for one may not work for another one.
Charlene
Taking one day at a time
Taking one day at a time
I took a look at GSK's website today and noticed that they have two extended release formulations of Requip in the pipeline, one of which is being researched for RLS. They're in Phase III, which means there should be opportunities for those who want to get in on the clinical trials.
Requip worked well for my RLS, but unfortunately I couldn't handle the nausea. I hope this info is useful.
Requip worked well for my RLS, but unfortunately I couldn't handle the nausea. I hope this info is useful.
--Haggi
-
musiclover
- Posts: 21
- Joined: Sat Feb 05, 2005 11:14 pm
So far (knock on wood) Requip has worked for me with little or no side effects. Works best when I take it around 8:00 in the evening (1 mg.) so it is well into my system by the time I go to bed. I still have an odd night with problems but that is about once every two weeks or so. So much better than every single night.
I have also been increasing my serum ferritin iron level with Ferrous Sulfate and I really think that has helped as well.
I have also been increasing my serum ferritin iron level with Ferrous Sulfate and I really think that has helped as well.