Rexap; It's taken me 5 months to wean off 14 pills a week of Mirapex. I took 2, 0.25 per day of Mirapex for my rls. I am since 1 month without any Mirapex, as of Sunday.. I'm on 300mg of Lyrica with 5mg. Oxy as a back-up.
Today I have an appt with a neurologist, n/p. I hoping and praying she knows where to lead me from here. I believe I am still withdrawing from the Murapex. I got 3-4 hrs sleep last night. What's next? Where do I go from here? If anyone has any suggestions, please let me know. My appt isn't until 2pm. I would really appreciate any suggestions. Thank you rls Friends. God bless.
Written by
Tennwalker1
To view profiles and participate in discussions please or .
I’d be inclined to hold onto the oxy for another month. You could well still be in withdrawal and not getting the full effect of the Lyrica. Or Lyrica may not be for you but don’t give up yet.
Also get your ferritin levels checked and make sure they are 100+. Don’t just accept normal.
Lol. Take that call it's 10 times more important and restless legs right? Love those grandbabies. Thanks Pam for your help, I appreciate it. We're on our way to the doctor now I'll have to give you an update after I've seen her.
I agree with Pam24, have your ferritin level checked. I know what you are going through. I weaned off requip last July because of augmentation. It was hell. Was put on carb/Levo. It worked, but gave me chronic UTIs. It took me four months, 4 sessions of antibiotics and a urologist putting me on daily low dose antibiotics before I realized it was the meds. I went cold turkey off the carb/Levo and the antibiotics end of Dec. UTI feeling went away right away but was so sick. I am finally starting to feel a little better now. I had nausea, stomach pain, diarrhea so bad that my dr told me to drink 3 huge bottles of gaderade a day to get my electralights back up. The sugar made my RLS 4 times worse and I had nothing to take. Ended up in emergency. She sent me to a GI specialist as I thought I was dying. I couldn’t eat and had no energy. Lost 10 lbs in 3 wks. He put me on prescription strength (900 billion) probiotics and I’m finally starting to feel better. Still have bouts of nausea and diarrhea but not as bad. Not loosing weight as bad. I go in for upper GI tomorrow. Through all of this, my RLS kept me from getting a good nights sleep, however, because I raised my ferritin level last year, it is not as bad as it used to be. Unfortunately I’m out of options for conventional meds. When I’m done tomorrow I am going to try and go the medical marijuana route. As a teen in the ‘60s and being one that never would have touched the stuff, I’m a little apprehensive. I know it’s different now and I’ve read that it has really helped a lot so I’m hoping it can help me.
Oh my gosh! You gave been through it. So sorry to hear that. I hope your feeling better soon.
I feel your pain. I'm still at sits end concerning, opioids and cbd. I saw a neurologist last Thursday. She a n/p and I really like her. She's easy to talk to. Last night I slept 7hrs consecutively. Wow! I actually feel human today. It's amazing. The night before I got 3 hrs. total.
She has me on 600mg of Horizant at 5pm and 50mg. of Tramadol 7:30 and another if I need it before bedtime. It worked great last night. Praying this will be something I can live with in order to get a good night's sleep.
It seems everyone on this site is genuinely concerned about ameachi other and halting with each others needs.
Ok, went to dr. Appt. She is very nice and easy to talk. I liked her. I think she was surprised at how sever my rls is. She is going to follow what mayo clinic prescribed. Stop the Lyricia and start on 600mg of Horizant. I just want to sleep more then 3,4,5 hrs a night. Her being a n/p she will assign me to a doctor and will have run everything by him. That's a good thing. We shall see.
I cant believe this, we ask her if I were new to rls what would she prescribe? She said prob Mirapex. What!!?? I shared with her what I knew about Mirapex. She had to have known. Surley! That was the worst part of the visit. Ugh!
I said I'm off that drug and do not want go back on it. She was good with that.. more later...
Hi, Tennwalker, as you probably know, Horizant and Lyrica are in the same class of drugs called alpha-2-delta ligands, along with gabapentin. I don't know why your doctor would switch you from Lyrica to Horizant. Have you been having side effect issues with Lyrica? If not, she may have switched your medication because Horizant is FDA-approved for RLS in the USA, whereas Lyrica is off-label. (I'm assuming your in the USA, since you mentioned the Mayo Clinic- are you?)
Horizant works well for some, but there is one big difference between the two: Horizant lasts much longer in the system than Lyrica. If you take either an hour or two before bedtime, way, the Lyrica clears mostly out of the system by morning, but Horizant lasts well into the afternoon. So Horizant is most appropriate for those who have daytime RLS symptoms. If you do not, and if you had good results with Lyrica and had tolerable side effects, you might consider asking to be put back on that. With Horizant, you may find some mental cloudiness that lasts well into the daytime. But experience will tell you which works best for you.
Also, I wouldn't switch over from one to the other all at once. Did your neurologist suggest cross-titrations between the two? I hope so. If not, you should ask her about that, and hopefully she can provide some guidance.
Finally, if either of those idols not sufficiently control your RLS symptoms, you may need to consider taking a low-dose opioid on an ongoing basis. I see you take oxycodone as needed. Another option is methadone, which the RLS experts tend to prefer. It has fewer side effects than other opioids: less of a "high", lower risk of addiction, less constipation, lasts longer. I use it, along with gabapentin, and am finding the combination works well. I am much more clear-headed with it than I was when I tried oxycodone. Good luck!
Hi thanks for the good advice. The reason she took me off Lyrica was because I told her that it wasn't doing me any good I would take it at different times during the evening and it never did anything as far as helping my legs. I would have to take the oxycodone and then I would get some relief. I can't believe this is going to be another neurologist down the drain can't tell you how many I've seen now. She is basically following the protocol that the Mayo Clinic has set down. And yes I am in the US.
There was no step down done because the two drugs are in the same class therefore she said as long as I took the horizant at 5 and not take the lyric I should be okay and then to take the oxy as needed. I'm so confused I don't know which way to go. I hurt so bad this evening all I can do is walk and I'm so tired and the pain is terrible, not sure what to do. 😪
Okay, well first: don't lose hope! Let's tease this apart a little more.
You say that Lyrica has not helped any. A couple things about that: one, as Pam said, you may still be in the withdrawal period from the pramipexole. Until that is fully over, any alpha-2-delta drug may not be very effective for you. And two, how long had you been taking Lyrica at the 300 mg dose before you told your doctor that it was not working? Lyrica is known to take some time to take full effect, in some cases up to a few weeks. So make sure to give it enough time. You might consider continuing on Lyrica until you've tried the full 300 mg dose for 2 weeks before making any further changes.
Then if that doesn't help, you could try the Horizant next and see if that works any better. Again, you might need to give it a week or two to take full effect. To be honest, my guess is that if Lyrica fails to provide relief after a full 2 weeks or more at 300 mg, Horizant may not do much better. But it's worth a try! And with both of those, take good notes on the side effects. Keep a daily log of how things are going for you, and what meds and doses you are taking, and at what time of day.
As you may know, both of those drugs are different ways of getting gabapentin into the body more efficiently. So gabapentin itself is the third of that alpha-2-delta class of drugs, but it requires higher doses to achieve the same internal levels of gabapentin. I have tried all three, and have found each of them to be effective. However, I had too many issues with side effects of Horizant (daytime drugginess) and Lyrica (tippiness, balance issues) so I ended up going back to gabapentin. For me, it has milder side effects even at the higher dose that was needed. (At this point, I get virtually complete RLS symptom control with gabapentin plus low-dose methadone. And my case is pretty severe: 8.5 out of 10, my neurologist estimates.)
Having said that, we are all different! Many of us here have had very good luck with Lyrica with acceptable side effects. (I don't see Horizant mentioned as much.)
In sum, I would recommend patience and optimism: consider giving Lyrica a good chance before switching (so long as side effects are tolerable). Another week or two should be sufficient, and will also move you closer to being fully over the pramipexole withdrawal period.
I weaned myself off of this from one and a half to one,quarter of a tablet..even then the withdrawals was shocking..it really is criminal that I was prescribed 3 pills a day which means I would sleep constantly..I am telling you to confront the health care professional who prescribed it..it is just plain wrong to get someone addicted to this drug and you see the result..I am sorry that you must go through this.
Hi ho, please keep posting on how you are getting on. Last night was my first night completely off pramipexole having gradually weened down from .5 mg. I have been on .125 for about 3 months. My new neurologist said that since my current dose was so low it would be easy to stop taking it. Her words were echoing in my head last night as I thrashed my legs around in bed. I finally got up after a few hours and took a hot bath and then an Ambien tablet. I slept after that but this morning my legs are still rocking. The neurologist prescribed Horizant but it is very expensive and my insurance company seems hesitant. A Plan B is to take smaller doses of gabapentin throughout the day. I guess I should research Lyrica. My ferritin level is only in the mid thirties so I have to figure out a way to get that boosted. Many of the iron supplements are hard on the stomach🤮.
Hi BJ, several things. If your legs settle down after the pramipexole has completely left your body, which may take a few weeks, or more, you should be able to only take the gabapentin, pregabalin or Horizant at night.
Ironbisglycinate, also known as gentle iron is generally relatively easy on the stomach. Once every other day works as well as 3x daily (these schedules were tested using ferrofumerate, but given the underlying mechanism, it should work the same with ironbisglycinate). If you still experience stomach problems or too much obstipation with the ironbisglycinate, you may consider the iron patches from patchMD. They very often have 40% off offers. And ship almost everywhere. Please do get your iron up, but have it checked regularly, e.g. once every 6 months.
Bjamn, I take Slow-Release Iron 3x day; was taking 4 with no stomach problems or constipation. My husband mixes every morning plain yogurt, turmeric powder, and at least 5 different pieces of fresh and dried fruit (pineapple, apple, dried prunes and apricots and walnuts. My ferritin is 150. I take Klonopin for sleep. Have been on every medication in the past; they worked for a while; Mirapex withdrawal was awful; at the time I didn’t know about augmentation.. I was desperate when I began learning about RLS especially latest research. The RLS Foundation put me in touch with a Dr. who treated RLS in my area (1hr. away). After years of suffering, I finally have relief. For me it seems that iron plays a significant role in my symptoms. Hope you also have success . Brica
Thank you for taking the time to respond. I have doubled my iron but I am also in the process of making an appointment my my GP to address the iron deficiency issue. My neurologist talked about Klonopin but as it is a benzodiazepine it is pretty highly regulated similar to opioids. After the pramipexole is out of my system (two nights of withdrawal) I will see if the gabapentin can do th trick. If not then I shall move on.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Wean off of Ropinirole?
Weaning off pramipexole 
Hell: Weaning off pramipexole 
