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#1 noah

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Posted 06 May 2010 - 11:12 AM

i have gradually been working up to 2mg requip extended release over the past month or so.I have been taking the ropinoral at bed and has found that it makes me a little sleepy which is fine since I am going to bed. Those of you that are on the 2mg extended release when are you taking it. I am concerned about taking it in the am for fear of falling asleep but have noticed when taking the lower doses at bed it starts to wear off around 3pm.

would appreciate any input!

#2 netgypsy

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Posted 06 May 2010 - 05:57 PM

If it works for you - great - but you don't want to get me started on requip. I only wish I had never taken it at all. It made me faint about 30 times a day. I was a zombie. I slept about 20 out of 24 hours AND it didn't help the PD and it gave me compulsions that luckily didn't get me trouble but were a serious annoyance. I tried all different doses and just thought it was the PD causing all the problems. When I got off the requip I had terrible anxiety attacks and it took me three months to get sinemet properly dosed and stop the the agonists. the difference was amazing. I was pretty much back to normal on sinemet. Yes my feet will move on occasion but not a lot. And I'd far rather have dancing feet than freezing, drooling, terrible constipation, sleepy all the time, stupid, reactive only, a zombie, fainting, compulsions, anxiety, stiffness, trouble swallowing and I could go on and on. So again - IF it works, great. But watch out for those side effects. There are a lot of them and you won't know they are side effects until you change drugs. I just thought it was the PD. NOT

#3 jka54

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Posted 11 May 2010 - 04:19 PM

Hi netgypsy, I read your posting and it got me to wondering if I maybe having the same issues you did with requip ( generic ropinerole )i 've been taking ropinerole for several months ( 3-4 mos.)now @.25 mg 3x a day ,in the begining i had no issues with it but now i am experiencing what i think might be some of the side effects you mentioned. I wonder if it's the cumulative effect that i am now experiencing. My dr. increased my dosage to 2mg. but i haven't started taking that yet. I will try to discontinue usage for about a week or 2 to see if some or all of the side effects will go away. then if it does i will discuss with my dr. to see if there are other alternative drugs . He mentioned azilect a while back but i declined it at the time because of the possible side effects. But now i guess i have to stay open minded about other drug substitutes. Thanks !

Joseph

#4 netgypsy

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Posted 11 May 2010 - 05:02 PM

Remember that you can get major anxiety attacks when stopping requip and other agonists. I did. So be sure to take it very slowly weaning off it with your doctor's knowledge so you can be aware of any problematic side effects.

Azilect made me faint but I have a preexisting problem with this. It didn't help my PD symptoms either but it's a good drug if it doesn't bother you. A lot of people say it helps.

All you can do is experiment with help and see what helps you. good luck and keep us informed!

#5 jka54

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Posted 11 May 2010 - 05:27 PM

Thanks for advice netgypsy.

#6 gazelle66

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Posted 12 May 2010 - 05:21 AM

Hi, I found there was a big difference between the normal ropinerole ans requip XL. On the first I felt like crap - sleepy, sick, and still unable to walk very well. I switched to requip XL a few months ago and the change is amazing. No more nausea, no more dozing off in front of peoples eyes and my walking has improved a lot. I agree with netgypsy - don't stop your meds suddenly without medical advise - I did this at christmas when still on ropinerole becuse i wanted to be awake for friends coming round - and after 4 days paid a heavy price and had to take to my bed. Hope this info helps.

#7 TerryH

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Posted 15 May 2010 - 11:12 PM

My mds just took me off Requip XL 8mg, twice a day. Just like that, no titrating down. I think I'm a bit paranoid abbout my family since then, but there's been a lot going on.
I feel so alone out here with this disease. I wish John and Penny's room was still open!

#8 jb49

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Posted 16 May 2010 - 06:42 AM

Never Fear Terry, I am here!! (I just leaped up onto the Coffee table, with my Super Parky Cape and mask on, with one fist, not my parky paw, the other one, raised to the sky: got that picture in your mind?) Yes, I too miss that chat room. Like everything else, you really don't miss it til its gone. As for the med thing: Did your doc replace the requip with anything else? And quitting it cold turkey. That sounds odd. If enough people respond to your statement fast enough it will be like a chatroom. Take care Terry. You aren't alone. John
Don't be hard on yourself, try your best and be strong!

#9 noah

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Posted 17 May 2010 - 05:16 PM

gazelle 66 sounds like what I am on. How long after you got up to 2mg did you start to feel better? I have been on it 4days and dont feel any better. From what I read people with pd have on days and off days I am still waiting for a few on days. So hard to image my life like this!
It sucks

#10 noah

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Posted 17 May 2010 - 05:17 PM

gazelle 66 sounds like what I am on. How long after you got up to 2mg did you start to feel better? I have been on it 4days and dont feel any better. From what I read people with pd have on days and off days I am still waiting for a few on days. So hard to image my life like this!
It sucks

#11 noah

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Posted 18 May 2010 - 10:13 AM

gazelle 66 I would love totalk 1/1 would you mind emailling me?

#12 gazelle66

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Posted 18 May 2010 - 10:57 AM

Hi Noah, think i've e-mailled you - let me know if it arrives!
G

#13 coacht

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Posted 18 May 2010 - 05:02 PM

Hello all,
I want to follow up with Netgypsy. My DW went on Requip because the compulsive behavior was not supposed to be as severe. It did cut her internet usage from 6-8 hours to 2-4 hours. She quit baking as much also. She did start shopping and buying lots of cheap clothes which she had never done. I finally got to go off of it after a consultation about DBS and the neurologist recommended it. It took another 4 months before she would do it and only after her regular neurologist had said it was okay two months before she did. She was weaned off of it over three weeks. The side effects did not stop until she was completely off of it. She immediately became more alert, brighter, able to plan better, and she was not so paranoid. She realized how she had been treating me and the kids and does not want to talk about it. It was a difficult four years with her on the agonists. I am not saying everything is all rosey now as there are still cognitive problems, but they are much better. It is nice to have her talk to me now and we can communicate instead of her trusting everyone else. I think she is overmedicated on Sinemet with what Netgypsy described in another post. It is like she is on speed with how fast she talks and her constantly interrupting me. She won't believe me on that either but she has on other things. It is a work in progress. I am not saying you will have these side effects, I just want you to trust those near you if they say things are not the way they should be. They know you better than the doctors do. Keep working on getting done what is best for you. We are all in this together.
Coach T

#14 netgypsy

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Posted 18 May 2010 - 07:53 PM

Overdosed on requip is zombie - sleepy and reactive and dopey. On autopilot.

Overdosed on sinemet is argumentative, know it all, move too fast, risk taker, doesn't listen to reason, slurs speech, may stagger a bit when walking - caffeinated drunk acting.

Requip never helped my PD symptoms by the way no matter how much I took. When sinemet is dosed correctly I'm pretty much normal.

#15 oneofseven

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Posted 18 May 2010 - 10:05 PM

netgypsy,

Do you find information on anything about overdosing on something like sinemet or stalevo?...I only can find info on stuff about if someone take a whole bottle..and that is the typical..call doctor..throw up the stuff...ya' know, etc...but what I want to know about is if you are just takin' a bit too much...I guess I kind of wish my new symptoms to be part of having too much meds...not the parky flu...I have not had anything like you talk about...too much energy..risk taker...any OCD...just the opposite which is more like a lack of staying on task or even beginning a task even though my mind wants to...it just takes so much energy to think to move...I have tried to cut back very little on my dosage by waiting longer to take it and it just makes me a bit more miserable in the long run...if I stick with taking it all day 4 hrs at a time by late afternoon I feel my best (morning worst)...wish I could find out why...I hate asking doctors because in the past I have been given up on a lot over the years because I have dystonia without much tremor and took quit a few off of even seeing doctors and just stayed healthy on my own...so I just fight that much harder on my own (I think it has made me stronger in some ways but a bit of a wimp about doctors) but with stalevo as a med it is hard to do that all by myself (I take a lot from what I am learning...150mg 5x day and don't ever want to take more!) ...you seem like you understand a lot of this stuff...I have followed up on some of your info on my own and it is very interesting...thanks for the time you put into it!!! What would be the best way of figuring out if I take too much of a dopamine type med?? oneofseven

#16 TerryH

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Posted 18 May 2010 - 11:23 PM

Super John, with your parkie cape,
No, my mds did not replace it with anything else. Yes, it was cold turkey. My balance is a little worse and perhaps my depression. I sleep more. Only changes I've noticed.

#17 jb49

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Posted 19 May 2010 - 05:13 AM

That sounds like a rough ride Terry, Hope your body and mind gets adapted to the change in medication. John
Don't be hard on yourself, try your best and be strong!

#18 gazelle66

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Posted 19 May 2010 - 06:54 AM

Hi Noah, i'm no doctor but from experience 2mg is not enough to make a real difference. Please take heart , things can get better. I was dx about a year and a half ago (am now 43) and I still work, I can salsa dance, my walking is the best it has been in a couple of years and i'm feeling pretty positive. Please believe my life is definitely not over.

When I was diagnosed, my neuro said something to me that stuck - "PD works in months and years, not hours and days" - he would not prescribe me any meds to start with but sent me off to have a think. I settled on taking ropinerole after reading various websites and talking to the neuro. I decided on meds because it was getting hard for me to walk up the road and my arm was getting very weak. I took ropinerole 9mg for a few months but even though some symptoms improved a bit, I really didn't get on with it - the side effects were too severe. After more reading of comments on forums, I asked for requip xl. I was the first person he had ever prescribed this to! After another few months of 8mg I feel much better - no ups and downs, no nausea, no sudden crashing sleepiness and I sleep well at night. So basically, read everyones views then make up your own mind and talk to your neuro about what you want to do to improve your situation - everyone is individual. If they won't listen, make a fuss or change neuro's. I take the requipxl first thing in the morning.

I have changed things in my life because of PD, but not really in a bad way - I eat more healthily, I exercise more (i'm talking dancing / hula hoop / wii - not boring gym, but each to their own!). I have my down days - it helps to have someone to talk to, but overall i'm pretty balanced at the moment. I personally don't feel i'm fighting pd - I take the view that my body / mind / soul has been overloaded and out of balance for years so each day I try out things that may help it recover. This is my view - you will find your own.

Hope this helps you,take it slowly and sort your meds out then work on all the rest.

#19 gazelle66

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Posted 19 May 2010 - 06:58 AM

dear coacht, thank you for your informative post. Makes me think about some things that could be down to agonist meds - thanks for keeping me on my guard!

best wishes
Gazelle

#20 netgypsy

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Posted 19 May 2010 - 04:32 PM

Mayo Clinic told me to avoid Stalevo and use just regular sinemet and so did the second movement disorder center I went to. I tried Stalevo anyway and fainted every I ate - 20 minutes after. I went on regular sinemet and got rid of all the other drugs to get that dosage right. They started me on 150 mg every three hours. I had gone to sinemet CR and one of the neuro docs told me that I was overdosing and that the manic behavior was the symptom.

In general - and always talk to your doc about this - but if the mornings are better than the afternoons you are probably having food reactions to the meds - be sure to leave an hour before and an hour after meals to take meds and you can still have problems with food. They are my main problem.

If the afternoons are better you are probably under medicated. I ended up going to every two hours with about 130 mg because of the problems with food and crashes with the three hour interval. Every two hours is a real pain but it works pretty well at keeping me normal so I try to tell myself it's like taking a breath mint on a date with someone you want to impress. hahaha.

So you might want to talk to your doctor about trying regular sinemet instead of stalevo - I think it's fairly easy to switch, and get your dosage right with it, then you can try stalevo again to see if you can get the same result with it and not have to take so darn many pills.

Keep us posted on what you learn. I had to pretty much experiment on my own for quite a while before I got rid of most of the symptoms because each person is so different.

Good luck!




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