Pramipexole Problems

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
TimG
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Pramipexole Problems

Postby TimG » Thu Jun 21, 2012 11:17 pm

I've been taking pramipexole for RLS/WED since last November. It's helped relieve symptoms in the evening and given me a better night's sleep. I upped the dose early in the treatment from 0.125 mg daily to 0.25 mg daily. I know that this is not very much, but I've had two problems with the higher dose and have had to back down to the lower dose I started with. (1) Weight gain--I've gained almost 10 lbs in six months. (2) I am sleepy and lethargic during the day on the higher dose.

Hopefully, going back to the lower dose will also help me lose weight. Because of the weight gain I'm now a little bit high on the BMI. The tiredness during the day has already improved on the lower dose. I hope the RLS/WED is manageable. At least, I haven't had augmentation.

Anyone had any similar problems on this drug?

Tim

rthom
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Re: Pramipexole Problems

Postby rthom » Fri Jun 22, 2012 1:11 am

Tim how long did you take the larger dose for?

ViewsAskew
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Re: Pramipexole Problems

Postby ViewsAskew » Fri Jun 22, 2012 1:26 am

I had weight gain issues - 50 pounds over 18 months. Now that I look back, I wonder why I ever let it get that bad! But, I did. Lack of sleep makes you do crazy things....
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.

TimG
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Joined: Wed Nov 23, 2011 2:26 pm

Re: Pramipexole Problems

Postby TimG » Fri Jun 22, 2012 2:56 am

rthom--I took the higher dose for about 5 months.

Ann--I've never had any weight issues before and did nothing differently--same diet, same exercises--but gained the weight.

rthom
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Re: Pramipexole Problems

Postby rthom » Fri Jun 22, 2012 3:40 am

wow you would have hoped by then the meds would have settled in your system for you. That's a long time to feel drowsy.

ViewsAskew
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Re: Pramipexole Problems

Postby ViewsAskew » Fri Jun 22, 2012 5:25 am

TimG wrote:rthom--I took the higher dose for about 5 months.

Ann--I've never had any weight issues before and did nothing differently--same diet, same exercises--but gained the weight.


I should have said that it was also while on the Mirapex. But I'm pretty sure that I ate more.
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.

badnights
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Re: Pramipexole Problems

Postby badnights » Tue Jul 03, 2012 5:19 am

TimG, I hope you're aware of the very real danger of impulse control disorder on Mirapex and the other dopamine agonist drugs. The uncontrollable impulse can be eating, gambling, shopping, sex. It has ruined lives. Did you gain weight because of an uncontrollable urge to eat? I'm no expert so I don't really know what constitutes a sign of ICD, but if you might have had a sign of it, then you probably want to switch to a different medication ASAP.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
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Betty/WV
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Re: Pramipexole Problems

Postby Betty/WV » Tue Jul 03, 2012 4:50 pm

I take pramipexole, and have for about 4 years. The neurologist started me out on 0.25 twice a day. I found out later that you should be started out on the lower dose of .125. It helped my RLS about 80%. BUT, pramipexole causes insomnia. That is one of the side effects. Even though my RLS is better, I still am not sleeping. And I have gained about 25 lbs. Which I can't afford to gain, I am short, 76 years old, so less active. Once I tried to cut my dose back and the RLS came back. I am now on a CPAP and sleeping a little better. But still feel exhausted during the day and have to nap. In fact, I didn't drive for almost a year because I was falling asleep driving. Which scared me to death. I just recently started driving again, but only areas close by. I realize when you get older, you sleep less. But this day time sleepiness is really messing my life. But my life has been messed up for over 40 years with the RLS/WED. :(

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

saptree
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Re: Pramipexole Problems

Postby saptree » Tue Jul 03, 2012 10:52 pm

Hi TimG,
I experienced the same exact thing! I was wondering if I was the one who was strange. I started pramipexole about a year ago. Started with 0.125mg, went to the effective dose of 0.25mg. Then I noticed weight gain and difficulty getting up in the morning. I just wanted to sleep and eat all day. I believe I have developed a binge eating disorder, which is something I have never had a problem with before. If I see food, I have to eat it. I can't stop! I have always been able to walk away from food. Now I finish up everyone's plates, eat what would be leftovers, and eat anything sitting in front of me, even if its detremental to my other afflection (Intersitial cystitis). I have discussed the weight gain with my dr. I have backed down to the 0.125mg to try to find a happy medium. I can still sleep at night, but I'm still gaining weight. I can't believe how fat my fingers are. I have gained about 20 lbs in the past year. On upper border of my BMI. So, yeah. I'm thinking of trying something else when I see my sleep specialist in August. Does anyone have any suggestions? Also... I'm on 100mg of zoloft, have been for almost 5 yrs. Would I benefit from giving that drug up?
Thanks! :shock:

TimG
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Re: Pramipexole Problems

Postby TimG » Tue Jul 10, 2012 12:38 am

Beth, Betty and Saptree,

Thank you for your replies. A pharmacist told me that the weight gain may be due to the dopamine agonist's property of reducing impulse control. I may be eating more than I think I am eating, resulting in the weight gain. I have been able to knock down the weight slightly with increased exercise. I also take citalopram 20 mg for anxiety, but that has never resulted in weight gain. I will discuss this with my sleep specialist physician next month.

Chipmunk
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Re: Pramipexole Problems

Postby Chipmunk » Mon Jul 16, 2012 2:52 am

saptree wrote:Hi TimG,
I experienced the same exact thing! I was wondering if I was the one who was strange. I started pramipexole about a year ago. Started with 0.125mg, went to the effective dose of 0.25mg. Then I noticed weight gain and difficulty getting up in the morning. I just wanted to sleep and eat all day. I believe I have developed a binge eating disorder, which is something I have never had a problem with before. If I see food, I have to eat it. I can't stop! I have always been able to walk away from food. Now I finish up everyone's plates, eat what would be leftovers, and eat anything sitting in front of me, even if its detremental to my other afflection (Intersitial cystitis). I have discussed the weight gain with my dr. I have backed down to the 0.125mg to try to find a happy medium. I can still sleep at night, but I'm still gaining weight. I can't believe how fat my fingers are. I have gained about 20 lbs in the past year. On upper border of my BMI. So, yeah. I'm thinking of trying something else when I see my sleep specialist in August. Does anyone have any suggestions? Also... I'm on 100mg of zoloft, have been for almost 5 yrs. Would I benefit from giving that drug up?
Thanks! :shock:

I also have interstitial cystitis - wonder if it's a coincidence or if it's somehow related to the RLS/WED?
Tracy

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the WED/RLS Foundation, and are not medical advice.

pamndorr
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Re: Pramipexole Problems

Postby pamndorr » Tue Jul 31, 2012 4:24 pm

I have been on and off this drug a few times in the last 4+years. I have gone through 2 drug holidays...the first one with pretty much nothing for the pain...the doctor tried a few different things...vicoden, tylenol # 3 with codein and a few others, nothing touched the pain. After 8 weeks of pure hell I started on Requip...worked for about 8 months then swithched me to the Pramipexole. That worked for about 8 months then messed around trying various other drugs and then went on another drug holiday...this time with Methadone for the pain. The Methadone worked but it was 8 weeks of nothing but vomiting and feeling like I might die. Then tried more drugs with no success so back to the Pramipexole. Started on the lowest dose have been increasing it as needed. After I was up past 1mg a day the doctor decided I should switch to Requip and my body couldnt make the switch...the Requip did nothing for the pain so she put me back on the Pramipexole. I now am up to 2.5 mg a day spread through-out the day. First dose is taken first thing in the morning. I also take Clonidine 2mg for sleep at night and Tramadole 50-100mg for pain at night. None of these drugs are working anymore.
I tried to tell the doctor that it wasnt working and she just keeps increasing the dose. I tried to tell her I felt like a crazy woman at times. I told her it was causing impulse control issues and I have been starting to nod off for no apparent reason. I can be sitting and talking and I will just nod off...only for a second..I wake right back up. Problem now is I feel it happening when I am driving. I am able to feel it happening so I can stop myself from fading out by shaking my head and turning the air up high. I told the doctor all of this and she said it is no way happening because of the Pramipexole. She said those side effects only happen to people that have Parkinsons and take the drug at much higher doses. My memory is also not much good anymore and I am sick to my stomach all day every day.
I sleep 3-4 hours a night and have been for a long time. I have no idea what it feels like to dream anymore. I don't reach that stage of sleep. I have gained 25+ pounds in the last year and I have zero patience for anything or anybody.
I want and need off this drug but the doctor wont do it. I don't think it would do much good to change doctors because as far as I have been able to figure out around MI anyway is there are no doctors that know anything about this disease. All they want to do is push a new drug at me or send me to some specialist that is no help at all.
I know it is this drug that is causing a lot is not all of my problems. I really don't care for the drug but not sure what else to do. I would like to go back to the Requip but I think I have to do another drug holiday first and this doctor said she doesnt believe in the drug holidays. She likes to push the drugs.
I really would like to just give up..then I look over at my grandson and I see so many warning signs that he very well could be starting to have issues...he is only 8 right now...but his little legs never stop moving. He was getting in trouble last year in school because he would all of a sudden jump up out of his chair. He says it is because hes legs bother him. He also was being disruptive and talking out of turn. Not able to focus on what he was doing. It took me going to the school to explain to them about RLS and to tell them that I thought he was ADHD and that ADHD and RLS go together a lot of times. So giving up is not an option. I do not want my child or grandchildren to suffer from this like I have. In all honesty....If I knew what RLS was all about when I was thinking about getting pregnant...I dont think I would have had children. I have passed it on to my son and in turn it looks like it was passed to his son. Talk about guilt.
So bottom line and my thinking on Pramipexole is that for me it is causing all kinds of issues and it is not doing a thing to improve quality of life. Thanks for listening...it always helps to vent and this is the only place where people understand.

Betty/WV
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Re: Pramipexole Problems

Postby Betty/WV » Tue Jul 31, 2012 6:00 pm

Pamndorr: I feel so bad for what you are going through. It is so true that we are all alike (WED/RLSers) and yet all different. The only thing I would suggest is you need to keep trying doctors until you find one that will at least try to help you.

I take pramipexole also. I take .25 mg twice a da y. I have been on it a few years now. This is the first period in 40 or more years that I have been able to lie down and rest at night. And I am starting to sleep better. I have been put on a CPAP machine. I know with this drug it can stop working or make the WED/RLS worse. But I will deal with that when and if it happens. I have some of the symptoms that you do. I have put on weight, but I take several other drugs for other problems. So who knows why. Also, my memory is getting very bad. But I am 76 so does that have anything to do with it. And I was falling asleep driving, so I didn't drive for about a y ear. I have started driving again but only short distances. But there again, I take 3 or 4 drugs that say "use caution in driving, may cause you to be drowsy". Or don't take with other drugs that may make you drowsy. People really don't realize how bad this disease is, how life changing it is.

I hope you will try another doctor. I went to many doctors over the years before I found one that helped me. In the early years I had doctors laugh at me, thinking I was just a crazy woman. I didn't know what was wrong with me for years. Then I read an article about WED/RLS and then I knew.

Take care and I pray you find relief.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

Polar Bear
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Re: Pramipexole Problems

Postby Polar Bear » Tue Jul 31, 2012 6:35 pm

pamndor: I hear what you are saying about passing this disease onto your son, and now your grandson.
This is not your fault... don't forget that you will also have passed on many wonderful things.
But I do understand your feelings and reckon that most mothers have the 'guilt trip' over many different issues.

I would comment on your doctor - if she is not willing to work with you then you need someone who will do so.
It doesn't necessarily have to be someone who 'states' they are rls/wed aware. A doctor who is willing to cooperate,
willing to learn, and in particular is willing to take a look at printed out information that has come from a
reliable source.
Please see the link in my signature to the RLS Medical Bulletin, this includes good information with regard to medication.
You could highlight the relevant sections so that the doctor does not have to work his/her way through the entire document.
Good luck.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: Pramipexole Problems

Postby ViewsAskew » Wed Aug 01, 2012 9:31 am

Pam, such a tough place to be. Wish I had an answer for you. I also hate pramipexole for many reasons. I recently stopped it because I was suicidal on it.

I hope you can find someone who listens and has some more ideas to try.

I'm curious about the pain, though. Do you think there could be a secondary cause for it? While some people do have very painful WED, I don't think I have heard of someone who's had the movements controlled, but still had a lot of pain. I could also be not remembering it....

Have you tried Neurontin, Lyrica, or gabapentin-encarbil? Many people with painful WED find that these drugs are the best for them. Also, did the doctor give you an anti-nausea drug when you were taking the methadone?
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.


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