Restless Legs Syndrome (RLS) Discussion Board

Goodness! All this bad news is really discouraging me. I was on ropinrole for about a year, and it wasn't working at all - even after dosage increases! In fact, I think it was making things worse! Prior to that, I had been taking gabapentin for many years, but eventually it stopped working. I recently switched to pramipexole, and (so far) it's been working like a dream (except for a little daytime sleepiness that I hope will pass)! I am really sad to learn of all these side effects, and truly hope I won't get them! We certainly need more treatment options!

florawora wrote:Goodness! All this bad news is really discouraging me. I was on ropinrole for about a year, and it wasn't working at all - even after dosage increases! In fact, I think it was making things worse! Prior to that, I had been taking gabapentin for many years, but eventually it stopped working. I recently switched to pramipexole, and (so far) it's been working like a dream (except for a little daytime sleepiness that I hope will pass)! I am really sad to learn of all these side effects, and truly hope I won't get them! We certainly need more treatment options!

My guess is that you'll be fine - for at least a while . Most of the people who write here are the ones who didn't have successes. The people who are successful with these drugs have no need to come here.

I have found that pramipexole has been giving me trouble breathing. I wanted to see if anyone else has had suspicion of this problem?
I've been living with RLS/WED for 10 years but have never been diagnosed with Apnea of any kind. Then after switching to pramipexole as my primary treatment I had another sleep studydone and they discovered severe apnea - seemingly out of nowhere. I'm wondering if the drug has helped to create this apnea problem? - I also can not run/exercise now very well because I'm so out of breath. Has any one else ever heard of breathing issues while on this drug? Thanks so much!!

Then after switching to pramipexole as my primary treatment I had another sleep studydone and they discovered severe apnea - seemingly out of nowhere. I'm wondering if the drug has helped to create this apnea problem? - I also can not run/exercise now very well because I'm so out of breath. Has any one else ever heard of breathing issues while on this drug?

I have been on pramipexole for several months now. I was put on pramipipexole at the same time that I was diagnosed with mild sleep apnea, so there was no correlation between them for me.

I also have mild asthma, but also am a competitive runner, so I am very sensitive about changes in my breathing. I have not seen any impact of the pramipexole on my breathing.

However, one of the less common side effects that is listed is "shortness of breath". This side effect occurs under the listing of those side effects where you should contact your doctor immediately.

As for your apnea, that is a diagnosis that becomes more common with age.

As for your breathing, that is something that you definitely need to consult a doctor about. Continued difficulty breathing that is impacting your ability to exercise can come from a variety of sources. It could be anything from allergies to a respiratory inflammation to cardiovascular issues. Therefore, don't wait too long. It might be something simple, but it sometimes is a bit more serious.

I just saw a new Neurologist yesterday for help....I told him that my legs are not reacting to the Pramipexole since I started working out in the pool for exercise...or if I'm extremely active during the day. I end up having to take one after the activity. I am currently on 1 mg. of the med once a day and I take it about 45 minutes before going to bed. His suggestion is this....he now wants me to take 2...when being very active I am supposed to take it 45 min. before the activity and continue to take one before going to sleep...sleep is only 2 hours at most during the night then I'm up all day. At any rate I'm new to this medication i.e. for not quite 2 1/2 yrs. and I feel this Doctor just dismissed me about this...however he is having me go to a sleep clinic thank heaven because I need to get some sleep. I'm tempted to cut back on the med a little at a time...maybe one every other day for a few months and then back off to every two days etc. Does that sound like a sound idea? Thank you for any help I can get. Regards, Jackie

I am stunned...I knew I wasn't over-eating and couldn't figure out why I was gaining weight...I had NO clue that this med could put on weight....now I don't feel so crazy. Thank you for all of you that have mentioned it...I to want to get off of this med and I'm going to do it over months...I can't believe this Neurologist is going to add another pill which will make 2 in one day.
Regards, Jackie

Jackie, you can try it. Some of us were able to reduce it some, but some of us not. It depends on if you've augmented.

How much did you start taking originally and how many times have you increased it?

My neurologist didn't think 1.5 mg twice a day was too much either. Thanks to Views and a few others I learned that was way too much and I ditched the neuro for a GP who was willing to take on a challenge.

Incidentally, I don't advise weaning off over months. The withdrawals are pure hell. At the high dose I was on, my GP's original plan was to wean me off over a month with the help of oxycodone. I couldn't handle the weaning withdrawals, so I had a 3 day weekend and just quit. It was rough; but I would rather 3 days of torment than 30.

jakesmom wrote:Incidentally, I don't advise weaning off over months. The withdrawals are pure hell. At the high dose I was on, my GP's original plan was to wean me off over a month with the help of oxycodone. I couldn't handle the weaning withdrawals, so I had a 3 day weekend and just quit. It was rough; but I would rather 3 days of torment than 30.

I agree with you. It's really hard to decrease it and it often is very difficult. Much easier to bite the bullet. BUT, you really have to have a strong enough opioid to help. Without it? It's nigh on impossible if you need to work, take care of children, or do anything that requires some mental acuity!

I agree, withdrawing slowly is agony, withdrawing quickly is agony, and the agony doesn't end until all the DA is out of your system. Doing it quickly, all at once, means less agony. Perhaps there are degrees but whether you're in fifth hell or seventh, it's still hell, and you should get in and out as quickly as you can.

The first 3-4 days are the worst, but remind yourself there will be an end to it. You won't sleep and you will be tortured but there will be an end.

It would be best to take time off work, and to have a doctor on board who will support you in this, not just the withdrawal but also finding medication afterward. The doctor has to understand what DA withdrawal does to a person with WED - most don't.

I think we as patients have to learn how to tell our doctors what it's like. It's very hard for them to understand what the WED sensations feel like, in the first place; that the medication they've been told will stop the symptoms turns out to worsen them vastly, in the second place; and thirdly, that stopping the medication worsens the symptoms yet more, to the point of being beyond torture and into a place of insanity. So, a lot of new stuff for these doctors to try to grasp. Our mistake is assuming they understand these three things.

Beth, I couldn't have said that better if I tried. You are spot on.

I have been on Mirapex for years. 1mg. It doesn't help me a whole lot, but I'm afraid not to take it for fear of having a really bad night. I take 5mg. around 5:pm and the other 5 mg. around 10. I do notice that my legs start bothering me almost immediately after the 10:00 PM one when I am relaxing. I think diet plays a big role for me also. I don 't seem to have any major bad side effects, just that it doesn't help that much.

bjk - please check your dosage of Mirapex - I think it is probably .5mg that you take an 5pm and again at around 10pm.
Current opinion is that 1mg daily is quite a large dose.

I have been on Mirapex for years. 1mg. It doesn't help me a whole lot, but I'm afraid not to take it for fear of having a really bad night. I take 5mg. around 5:pm and the other 5 mg. around 10. I do notice that my legs start bothering me almost immediately after the 10:00 PM one when I am relaxing. I think diet plays a big role for me also. I don 't seem to have any major bad side effects, just that it doesn't help that much.

The pill takes from 1 and 1/2 to 2 hours to kick in. So the 10 pm discomfort is your usual nightly worsening of symptoms, not covered by the first pill because the symptoms are too strong, and not covered by the second pill because it hasn't kicked in yet. Another factor may be if 10 pm is when you first try to relax - since relaxation is what sets it off.

I won't advise you to take the second pill earlier, because it only lasts about 4 hours at most after it kicks in, and that might not get you through the night.

I will advise you to tell your doctor that you're lacking in restful sleep, and that the medication is not covering the sensations. Secondly, ask for a ferritin test. Ask for all the iron measures, but especially the ferritin, and explain to your doctor that you learned your ferritin has to be above 100.
Reason 1: for WED patients, ferritin under 75 is associated with more severe symptoms
Reason 2: for WED patients on dopamine drugs, ferritin under 100 is associated with augmentation.

Try taking vitamin D supplements, too; best to get your D measured in the blood test, first, but most North Americans turn out to be deficient. And it has been linked to increased severity of WED symptoms.