Recuip CR

beth · Post by **beth** » Wed Oct 01, 2008 12:32 am

After trying requip mirapex , sinimet, along with Klonopin they started me on Requip CR. Tonight will be my first dose,does anyone have any experience with this.I was on Sinimet 2 pills at night and 2 kolonopin and became very sick to my stomach and severe pain in my legs.I had to go out to the hospital and then tey switched to the requip CR but I am afraid of what it will be like. Beth

Post by **ViewsAskew** » Wed Oct 01, 2008 5:06 am

Beth, did you experience augmentation with Mirapex or Sinemet?

That is, a worsening of your symptoms? Either in earlier onset or in intensity?

beth · Post by **beth** » Wed Oct 01, 2008 2:49 pm

I experienced augmentation on requip Mirapex and Sinimet.I could not belive how bad it got with the Sinimet.I hope the Dr. made the right move but I was able to sleep last night.Thant is the norm for me 1-3 days relief and then nothing. My fear is that I will be tired all day due to it being a 24 med.They said they would add a stimulant if that happens but I am so sick ogf juggling meds. Beth

Post by **ViewsAskew** » Wed Oct 01, 2008 7:14 pm

Beth, just be careful. The Mayo Clinic's algorithm says that IF you augmented two times that you should NOT take another dopaminergic. Since the Requip CR is another dopaminergic, I would be very, very watchful. At the FIRST sign of any worsening, call him and stop it.

If you are still augmented from the other drugs, that is a different story. In that case, you wouldn't probably notice a worsening, just that it doesn't get better. Once you've augmented, common treatment is to completely stop ALL dopaminergics until you have stabilized. Usually an opioid is used during this time.

I hope it works. I know how tired of this you are...I truly do. I spend my life feeling the same.

beth · Post by **beth** » Wed Oct 01, 2008 10:33 pm

I am not real happy with another dopamine but I feel like I am along for the ride.I am so glad that I was able to stop the Sinimet.I was so sick to my stomach and leg pains.So far the Requip XL makes me real tired all day which reminds me of when I did chemo and radiation. I am a person that is normally on the go so its tough. Beth

beth · Post by **beth** » Sun Oct 05, 2008 5:00 am

Hi
I did better when the Dr switched me to the ReQuip extended type with two tabs of Klonopin at bed but that worked from last Tuesday and now Saturday night I am back to the jiggy legs and body.I am tired of telling her its not working.We hit the road for a 6 hr drive tomorrow and I know that won't help.Has this happened to anyone else and what would you do.I will miss the Monday Chat room because we are on the road so if anyone is up HELP. Beth

Post by **ViewsAskew** » Sun Oct 05, 2008 8:51 am

I can't speak for others, but I've been through eight or nine doctors - maybe ten by now - and at least ten-twelve medications. My guess is mine is average. Some of us find it first try, some of us search for a long, long time.

You asked what others would do in your situation. In the short term, I would call your doc as soon as you can and tell her it's not working. Make an appointment ASAP. It's hard, but you have to live with this, not her. It is indeed tiring to go through. It just isn't fair...unfortunately, we have no other options unless we don't want help. I'd also refuse, at this time, to try any more dopamine drugs.

In the long run, here's what I've found is essential (for me) to help make this less process painful.

1. Know RLS inside and out. It's so important to know what the options are, what the doctors can be doing (and should be doing based on thing like the algorithm). It's the only way you can A) guide a doc who isn't sure what to do B)make sure that what the doc did is in line with standard RLS treatment. To that end, to me, it's essential to read all the stickies here, read the documents on the Foundation's site, read the stuff at We Move, and buy at least one of the main RLS treatment books.

2. Find a doc who listens to you, who you don't feel bad saying, "I wish it was, but it isn't working. What's next?" A doc who you feel is your partner. That doc should be open to hearing information from you, such as from the RLS book you read, what people said here, etc. RLS hasn't been treated all that many years, so everyone is learning as they go. And a good doc will listen to other people's experiences and not pooh-pooh yours. Right now, you haven't had much success. Because opioids are the most successful class after opioids, I'd might want to know if she'd be willing to try them next - not to stay on them, but because if they didn't work, it would be potentially that RLS was not the problem at all, or not the only problem.

3. Work out a plan with this doc. Short term and long term. What will the doc do if the next drug doesn't work? Will she prescribe opioids if other classes do not work? Will she be willing to help you find a "cocktail" (a mixture of two or more meds together) that control the RLS, if that is what is needed? Does she know a specialist or other person to ask for help if she runs into a wall?

$. Keep an open mind...but always speak up when something isn't right for you. If you've been raised to not take drugs or that strong people just deal with it, for example, it can be really hard to accept that you need to take drugs for the rest of you life to keep the RLS in control. But, you may just have to do that. On the other hand, always ask yourself if what the doc is asking you to do is really right for you. There is a fine line between these and it's not always apparent.

5. Never give up. Easier said than done! And there are times that I am sure that I just can't handle another night of this crap. But, I always do. There are new drugs being developed. There are new studies being done. Someday we will not have to go through this anymore.

6. Give back. To the Foundation, particularly. They cannot do what they do to help us without our helping them. Ten bucks? Send it in. Extra time? Start a support group. This helps me, at any rate, keep things in perspective, stay up-to-date on treatments, feel that I am paying it forward, etc. Mostly, it helps me maintain my mental health, if you know what I mean.

beth · Post by **beth** » Tue Oct 07, 2008 11:45 pm

Thanks so much for all the helpful info.I think I will be alot more prepared for my appointment on Friday.I have bought 5 or 6 books on RLS and when I am up at night I walk around reading them.I found myself admonishing a man at the convention we were at because he was trying to sell a vibrating machine for your feet and he stated it as a potential cure for RLS. Thanks Beth

Jodee · Post by **Jodee** » Wed Oct 08, 2008 5:59 am

Hi Beth - I noticed you're in Chula Vista. You might consider making an appointment with Dr. Buchfuhrer. He's probably written a couple of those books you're reading. He's in Downey - a day trip for you. It's a pain playing musical chairs with doctors, but it might be worth it.

Jodee

beth · Post by **beth** » Wed Oct 08, 2008 8:10 am

Hi
You know he has written alot of the books I have bought.I really want to go see him.I am only worried about the travel time. I end up at this Doctors office every 2 weeks and its 1 hr commute on a good day. He sounds like a Great Doc and a great website. Beth

Post by **ViewsAskew** » Wed Oct 08, 2008 6:08 pm

I am pretty sure he sees patients from all over the country...once he knows you, he'll chat on the phone or call in scripts, work with your doc, etc. if what his patients have told me is correct.

No question, it would be an ordeal to get there frequently...but, it might be worth it to at least help coordinate with your own doc.

Hos · Post by **Hos** » Sat Oct 11, 2008 3:24 am

I would def. try Dr. B since he's fairly close. Who knows, if he gets a good cocktail going for you then you'll need to see him every 6 months, not every 2 weeks. I delayed seeing a renowned specialist since I didn't want to mess with the drive, I sure do wish I could of taken back those years and bit the bullet and just made the drive, would of saved me years of grief.

What dose are you taking with the Requip CR? Obviously if it's augmenting then it's a bad sign but if it's just not working at night then maybe it just needs to be slowly increased?

Hang in there.

beth · Post by **beth** » Sat Oct 11, 2008 4:59 am

Hi
I went in today to my Dr and she switched me again because the Recuip Cr only helped for 5 days. She told me to start taking Cabergoline 2 times a week along with 2 klonopine at bed and vicodine as needed. I am afraid because I have been having such bad reactions with any of the parkinsons meds and I have a family history of heart valve problems. I am very tired of the parkinsons meds. She did blood work because now I have bone and joint pain which I didn't have before the meds. Beth

mackjergens · Post by **mackjergens** » Sat Oct 11, 2008 5:40 am

Beth,
have you tried just taking the vicodin. I use hydrocodone and ultram to control my rls.

beth · Post by **beth** » Sat Oct 11, 2008 10:49 am

Hi
I decided to try vicodin tonight onn my own so I took 2 500 mg at bedtime instead of the new med. It helped me sleep for a while which is great since I average 2 hrs on a good night,but then I woke up and I wasn't sure what to do because it was pretty bad.I took a hot bath and I am just trying to ride it out .I am not sure if I should try more vicodin, I guess I will have to ask about the other drug. Thanks Beth

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