ReQuip for RLS

BonnieB · Post by **BonnieB** » Wed Jul 30, 2008 1:01 pm

I have just located this site and am so glad. I have only gone through a
few postings, but I am going to continue. The postings are very informative.

I am just wondering if anyone has had any success with ReQuip. I have been taking it for months now and had gotten up to 4 mg at night. The only way I got any relief at all was to take 2 mg at 8 o'clock and then 2 mg at bedtime. (But because of taking the 2 mg, bedtime has to be around 9 o'clock when I am just about out of it. However, I'm beginning to think the side effects are not worth it. (1) I don't like having to go to bed at such an early hour and I don't like the spaced-out feeling during the day. For some reason it seems to affect my vision in that it is difficult to focus my eyes at times during the day. Also, my balance seems to be off. I am very discouraged with the medication right now because I am having problems with RLS during the day that I haven't had before. I'm at the point now where I'm questioning whether taking the ReQuip is worth it. the doctor has played with the dosage, and the secret seems to be in taking 2 mg at 8 p.m. which makes me feel like a zombie. At this point, I am thinking about weaning myself off. I am not convinced this is a good drug for RLS.

I did try the teaspoon of mustard last night and got relief (had to do it twice, once for right leg and then later for left leg). Don't know if that will continue working.

Any input would be appreciated.

Sojourner · Post by **Sojourner** » Wed Jul 30, 2008 6:48 pm

Bb, Welcome and glad you found us. Sorry for the rls. I am not a Requip user myself but I'm sure others who are will find your message. Just off the top of my head it may be your earlier symptoms may be a sign of augmentation. Just a thought. Also, although perhaps not particularly unusual, I don't know that we have many members who are on 4 mg or have gotten to 4 mg in just a couple of months. Your symptoms certainly could be related to requip side effects so probably talking them over with the doc. is a good idea. Others may be able to give you some advice on weaning off the med. I think that you may perhaps need something (another med) to help you during this time.

If you havent already, please read some of the "stickies" as they contain lots of good information.

Again, welcome and best wishes.

M.

BonnieB · Post by **BonnieB** » Wed Jul 30, 2008 8:39 pm

Thanks, Sojourner, for your response. I am so happy to find this site. I read for over an hour this morning and found it to be extremely helpful. Can't wait to get back and go forward, so much information and it is beneficial to hear of the experiences of others like myself. RLS is such a frustrating problem and, unfortunately, the doctors just don't have or don't take the time necessary to find a quick solution.

I think I will try the ferrous sulfate because I note that lack of iron can be a problem and my diet could very well be lacking in iron. That, at least, seems like a relatively simple thing to start with.

Thanks again for your encouragement!

Sojourner · Post by **Sojourner** » Thu Jul 31, 2008 4:06 am

BB, Unfortunately, for many, finding a quick and lasting program to combat rls is an extremely difficult task. It's more of the "journey rather than destination" type of thing. I guess there's good in knowing that. The best we can do, and you are doing it, is to educate yourself and find a provider who is knowledgeable, willing to learn, and who will take you and your rls seriously.

Have you had your ferritin level checked? Iron supplements can be hard on the body and too much is not a good thing. Be sure to consult with your provider about it.

Continued best wishes, my friend,

M.

Post by **ViewsAskew** » Thu Jul 31, 2008 5:20 am

Hi Bonnie,

I, also, was immediately knocked out by the dopamine agonists, about 90 minutes after taking them. I had to be either at home or with someone else who was driving so I could immediately go to sleep. I did find, however, I could take a small dose - quite small, early-ish, like 7 PM, then take my major dose 90 minutes before I wanted to sleep.

While your nightly dose is within the limits (the total of 4 mg that close together is at the top limit) for ropinerole according to the Hening et.al. book for physicians on managing RLS, I admit I'd also be questioning if this was the best drug for you. You now have to RLS during the day, which is usually associated with augmentation (which is much more likely to happen at high dosages and if you have low ferritin levels, according to RLS specialists).

Have you tried Mirapex? It is similar, yet enough different that some people do much better on one than the other. Also, there is the idea of "cocktails" - a bit of this, a bit of that, rather than a LOT of one thing.

I hope your specialist is knowledgable...they sometimes are great, sometimes not. Did he or she do a ferritin test? That's my first test for a good RLS doc, because, to me, that is really essential knowledge to have. My first doc never tested for ferritin...it turned out to be very low. And, just recently I learned that they believe that people with low ferritin levels are most likely to augment. So, since that is now known by RLS specialists, I'd want any specialist I worked with to know that.

BonnieB · Post by **BonnieB** » Thu Jul 31, 2008 12:30 pm

Hi Ann, thanks for your suggestions. The neurologist I am seeing enjoys a good reputation in the community, but he did not mention doing a ferritin test. When I mentioned that the medication didn't seem to be working that well and that it didn't work at all if I missed taking it at 8 p.m., he increased the dose. Somehow, I haven't felt the drug was right for me from the beginning, and I especially do not like the sensations I have during the day...spaced out, some days worse than others, and my RLS has increased from maybe once or twice a week to every day and every night, plus my arms are now bothering me. The last two nights have been horrible. I took 0.50 mg for a couple of nights and last night I stopped altogether.

I have an appointment 08/13, so I'll mention the Mirapex and get his thoughts on that. He did offer clonazepam but before I left the office decided instead to up the dose of Requip

It is now 5:29 a.m. and I have been up all night with no relief in sight.

While I'm sorry the Requip didn't work for you, it's comforting to know that it's not just me and that it apparently just doesn't work for everyone.

Thanks again!

ed2008 · Post by **ed2008** » Thu Jul 31, 2008 3:01 pm

i'm at the end of the first week of the requip starter pak, and i cannot sleep at all!!!!!!! add to this, my clonazepam step down is giving me ringing in the ears and some leg soreness...

amazing how the same drug causes completely different effects in people. gives a new perspective to counseling patients in the pharmacy about side effects :-)

Ed

BonnieB · Post by **BonnieB** » Thu Jul 31, 2008 3:37 pm

So very true, Ed. Hadn't thought that much about the counseling part, but you're absolutely right. I have been on the Requip for about 3 months and I just feel like I've had enough. I didn't like the side effects but figured I could endure if the benefit was there, but with virtually no benefit, I'm just going to stop it. Since taking it for 3-4 months, the RLS is far worse than I ever had before. At least, with an epidural injection for back problems, I could get relief for a month or so before Requip, but since Requip, no relief even after the injections.

I'm sure it's a wonderful drug for some people...just not for me. I'm sure I'll go through some withdrawal symptoms, but, hopefully, they will be short-lived and maybe I'll at least go back to where I was before Requip. Since I don't have an appointment until 8/13, I'm debating about calling the doctor, but doubt he would want to do anything until I see him. By then, maybe I'll at least be back to where I started. Don't know if I mentioned earlier, but I now have the sensation in my arms and that is definitely new.

Good luck to you, though. I hope it works for you.

FidgetBoy · Post by **FidgetBoy** » Thu Jul 31, 2008 6:50 pm

Bonnie- I looked up the vision stuff in the package insert and it does appear that between 3-6% of patients have vison issues- blurring, trouble accomodating, dryness, etc. (which I wasn't aware of) I agree with Ann it sounds like you're augmenting as well-- which is earlier symptoms or having RLS in more areas (like your arms). I'm a bit troubled that you are seeing an RLS specialist and you haven't been worked up for iron deficiency? I would see what he says at the next visit and if he tries to up your requip dose again, I'd switch doctors.

BonnieB · Post by **BonnieB** » Thu Jul 31, 2008 9:08 pm

Thanks, Josh, for your response. Opinions from someone like yourself are helpful in making a decision as to how to approach the doctor. All I know is that I don't believe the medication is right for me, but I'm not a professional or in a position to tell the doctor what to do, and I don't know enough to take the responsibility at this time for making a medication decision. My feeling is that his experience and knowledge should dictate another option for him to offer me...and he may well do that. I don't want to get ahead of myself and assume this is the end of the line, but I have to admit I am a little uneasy in that it appears that the some doctors are not as well versed in RLS as I would like.

As I said, my appointment is not until 8/13, and I don't know what I will do until that time, probably try some of the natural remedies that I have been reading about in the hopes that I will find something that will help until the right pharmaceutical drug can be found.

I went back over old records and I have been on Requip since January. I have had a few nights' relief during that period but very few, less than a half-dozen.

If anyone has any suggestions of anything I might try in the interim between now and 8/23, I would be very appreciative.

Post by **ViewsAskew** » Fri Aug 01, 2008 8:01 am

If you are augmenting, stopping the Requip may be very tough. For some reason - maybe the receptors resetting - once you augment the RLS goes NUTS when you stop the Requip. According to at least three RLS researcher/specialists, the only way through this is to suffer horrendously or to use an opioid to help. Many doctors don't know this, either. I tried three time to quit by myself and couldn't do it.

A few things I can think of (and I am not a doctor!) may be to see if backing off the dose a little helps at all (it sometimes does when you are augmenting), play with the dose so that you take less at 8 PM and more right before sleep to see if that helps reduce the sleepiness, call the doctor and ask if he'll move up the appointment or if you can get on a waiting list for a cancellation, see if any of the non-pharma things help you - massage, vitamins, acupuncture, etc, and lastly, to be as prepared as you can when you go into that meeting. Take a copy of the Mayo Clinic Algorithm with you, order one of the RLS books that discusses treatment options and bookmark the appropriate pages, etc.

It seems to me that we all have been put in the awkward position of learning how to work with our doctors and it's certainly not easy. Based on my own situation and after hearing from literally hundreds of people on this and other forums, I've come to believe that we truly need to take on a responsibility we don't have to with almost any other doctor.

As you noted, many RLS "specialists" do not know enough. Period. So, we have to learn how to determine if this or that doc really has the knowledge to help us or not. If he or she doesn't, we have to find someone who does or educate that person. Staying with someone who doesn't have it and following their advice (as I did for 18 months) can be devastating. Even if he didn't deliberately cause my future problems, the actions of the doctor I saw who said he "knew all about RLS" caused me to almost completely lose the business I'd built up for 15 years along with taxing my relationship with my husband unnecessarily and creating a black hole in my life that lasted for over two years.

We deserve more than that. All of us. I had to learn to question what any doctor says. Not meanly. Not as if I know it all, but simply to say, "Doctor, please help me understand. I know I am not a doctor and you have so much more education than I. I've read (and list the source - the Mayo Clinic, the RLS Foundation, one of the excellent books by Hening, Buchfurer and Lee or Buchfurer, Hening and Kushida) that (and say what you read that he doesn't seem to get or understand)." Then you can ask them if they would consider that, if they've done it before, etc.

This is HARD! We are raised that doctors (and policemen) have much more authority than we. That you do not question them. But, we have to at times. We just have to do it in a way that shows respect, doesn't alienate them, and helps them to help us.

Our other option is to call it quits and move to the next one. It took me several tries to get to someone that "got" it and whose greatest concern was me and making me better. Someone who would read what I brought. Someone who respected me and the knowledge I'd gained. Someone who would talk to Dr Buchfurer (BTW, he often does this just to help) when we were at a dead end. And, this was a primary care doc, not a specialist.

You have a tough decision to make. And whatever it is, it's still going to be hard. Do you try to work it out with someone you are coming to believe may not be as versed in RLS treatment as you need? Do you switch? If so, to whom and how do you ensure they can help?

Whew! I guess I got a little long-winded here. Hope that anyone reading it got something out of it...

BonnieB · Post by **BonnieB** » Fri Aug 01, 2008 5:28 pm

Ann, I can't tell you how much I appreciate your reply. It was just what I needed this morning, and mentally I feel better already, and I thank you for that! Your note made sense of it all.

I don't want to get too lengthy about all this, but, in trying to get off this drug as quickly as possible, I realize I probably did all the wrong things, but it was unreal how I felt that I had to get away from this drug as quickly as possible; I just felt like I couldn't wait. At the time I realized there would more than likely be problems but my feel was "how much worse can they get?"

The last three days and nights have been absolute torture. No sleep at all for the first two nights. Then, last night I was searching on the Internet and found that sometimes they use lorazepam for RLS and I remembered having been prescribed that several months ago, so I decided I would try 1 mg of that - nothing. By midnight I was beside myself. I have back problems so the doctor mentioned that walking on the treadmill was not good for that, but as I was walking all over the house and being desperate, I dedided to try to walk some. By this time I was stumbling around and bouncing off the walls. I decided to try the treadmill and take it slow and with care, and I walked 1/4 mile. I have one of those bags that you put in the microwave, (rice inside, I think) and I heated that up and the phone woke up this morning at 9:11. The first thing I did was check my email to see if there was a reply relative to all this and there you were. I fell uplifted like you wouldn't believe, partly due to getting a little bit of sleep, I'm sure, but also due to your note. Your note makes so much sense and I will definitely be guided by it.

My husband has insisted that I try to get in sooner, but my feeling is that (if possible) I would rather ride this thing out, see if I can get back to where I was in December off the medication, gain as much knowledge as possible, and take the vitamins and minerals recommended that would appear indicated. That was the plan I had last night and your note makes me lean in that direction even more.

I talked to a friend of my husbands who is on Mirapex, and has been for years he said, with absolutely no problems at all. Takes it during the day and doesn't get sleepy. Also, drinks 1/2 liter of tonic water a day and is having no problems with RLS.

After reading the similarities between Mirapex and Requip, I'm kinda spooked about trying Mirapex now. I definitely don't want to go through this experience again. What do you think? I mean I don't want to ask for the doctor's help and then put up a brick wall. I'm sure that is something out there that will help me; it's just a matter of finding the doctor who will take the time and work with me. I don't think this doctor is not one of those doctors who won't listen, just perhaps not well versed in RLS. When I mentioned in the very beginning that it didn't seem to be working totally, but that I was sleeping a little better, he said well if it's working at all let's just stay with it a while and maybe adjust the dose. My feeling is that taking 2 mg at 8 p.m. and 2 mg at 9-9:30 p.m. is simply toxic to me, and I don't want to have those feelings anymore.

Thanks so much, Ann, for taking the time to try to help me...you have! Thanks, also, for taking the time to read my life's story for the last three days; it really helps to communicate with someone who understands.

Post by **ViewsAskew** » Fri Aug 01, 2008 7:42 pm

You know, I remember feeling exactly as you are right now...it's probably the main reason I am still typing responses to people. I don't want anyone to go through what I did if information I have can help prevent that. I remember those nights that wouldn't end, when everything seemed so out of control, that my life seemed to belong to someone else.

Per the Mirapex, this is just my thought and it's only consistent with one RLS specialist I know. After augmentation, no one should go straight to another dopamine agonist. They need at least a month or so after everything is "back to normal" to get those receptors time to reset. Then, the iron has to increase. Some doctors would immediately switch you to Mirapex. If you listen to Dr Buchfurer's comments from a few weeks ago (highly recommended, by the way), I think he says to wait until the opioid has worked and then switch, but I may be remembering wrong.

I haven't seen the research myself, but I was convinced recently by one of the RLS researchers that low ferritin is the primary cause of augmentation. So, I make two connections regarding our treatment.

1. No one should ever take a dopamine agonist without knowing their ferritin. Susan and I aren't a study group, but both of us had ferritin levels of 8 and we augmented in a very short time. I'd like to see if there is a relationship between ferritin and time to augment, but I don't know. I'm just hypothesizing. Regardless, with do know that low ferritin augments, SO, why give Mirapex or Requip to someone with low ferritin?

2. When someone augments and their ferritin is low, they should get get the iron higher before trying one again as the primary medication.

Again, I stress that this is me making things up. And, they are simply associations I see - I'm seeing connections where connections may not be. Part of it is common sense, though, it seems to me, so I can rationalize it, lol.

BonnieB · Post by **BonnieB** » Fri Aug 01, 2008 8:44 pm

Ann, I will be forever indebted to you. For the first time I feel like I'm getting somewhere. It is so difficult to make intelligent decisions when you feel that you don't have near enough informatation to make that decision and time does not permit extensive investigation. Your suggestions from your experiences and knowledge all agree with my own feelings just based on my inward feelings about my own body, and having your input gives me the confidence and strength to push forward. I am in 100% agreement with all your suggestions, amazingly, most of which I felt like my body was dictating, but with so little knowledge on my part, I wasn't comfortable with making some of the suggestions to the doctor. I feel much better about that now.

It's almost like you read my mind. My husband is so worried and concerned, he just wants me to do something, anything, but now. I have tried to explain that I really would like to get back to where I was in December (after getting your response regarding augmentation) and then going from there. Now that some of my senses seem to be returning, I cannot believe how much worse I have gotten on the Requip...scary!

I have Vicodin for chronic back pain that I can take, and I'm considering taking 325 mg of ferrous sulfate (mainly because my diet is a clue that could very likely be low. These are just a couple of things that I can do that are relatively simple and may make me feel better until my appointment. Also, I'll definitely get the book!

Thank you, thank you, thank you!

Post by **ViewsAskew** » Fri Aug 01, 2008 9:17 pm

You are very welcome.

I would never tell anyone to self medicate. But I will be extremely honest and say I've done it more times than I want to admit...or probably should have. I can justify it saying that it wasn't anything that wasn't in a book about RLS...but that is a justification.

That said, I don't know if I could have had the faith to push my doctors had I not tried some things on my own.

It's a wonderful feeling when it all starts coming together, isn't it? Even if you aren't sure of exactly how, you finally feel that there IS a way out. And that you do NOT have to feel this way the rest of your life.