Restless Legs Syndrome (RLS) Discussion Board

I am a 76 year old female and have had RLs for 30 - 35 years. In 2006, after trying Klonopin, Sinemet, Requip, and Lyrica without success and with what I now realize was augmentation my doctor put me on Methadone. I was on it for about 10 years but had to increase the dose to the point that I could not function normally and had to go withdraw from it. We tried Lyrica again, then Neupro patches both unsuccessfully. Our next step, in about 2017 was pramipexole, 0.25 mg, gabapentin 300 mg, and eszopiclone 3mg. This worked well for a while but then augmentation set in again. He upped my pramipexole at various times to a max of 0.5mg twice a day, and 600 mg of gabapentin twice a day. This summer he said that I needed to get off the pramipexole and gave me a schedule to reduce my doses by 0.625 mg every 30 days, he changed my gabapentin to 800 mg twice a day and asked mt to come back to see him in 6 months. I had never had an iron test and asked him to order a Full Iron Panel. He ordered "Ferratin, Serum or Plasma" and reported the result as: "Ferratin 95.7, which is normal."

By this time I was fed up with him. I live in Nashville, Tennessee and my PCP is at Vanderbilt University Medical Center. In June I requested that she refer me to a neurologist at Vanderbilt Sleep Center and she agreed. The earliest appointment I could get was Nov 15 and I am anxiously awaiting it.

I have had worsening RLS symptoms and intense jerking in the afternoon and before bed since I started decreasing the pramipexole but generally sleep fairly well since I increased the gabapentin to 800 mg twice a day and continue to take 3 mg of eszopiclone nightly. My husband reports that I jerk in my sleep, especially soon after going to sleep but I usually sleep through it.

I am now down to a single dose of 0.25 mg of pramipexole at night. I am considering either discontinuing it at this point or going down one more step to 0.125 mg for a couple of weeks before discontinuing it. Another option is to continue the pramipexole until I see the new doctor on Nov 15.

My current meds in addition to the three mentioned above are levothyroxine, atorvastatin, metformin XR, losartan, and amlodipine. I do not know if any of these exacerbate RLS. Can anyone tell me about that?

Any comments or suggestions will be greatly appreciated.

Since it is only a month until you go to Vanderbilt, I cannot see any justification for dropping your pramipexole below 0.25mg right now. It would only make your sleep and RLS worse. There is a good chance that they will put you back onto an opioid, which would make stopping the pramipexole easier.

As for the other meds, the only one that has a side effect that you need to be aware of is the levothyroxin. If you are taking an iron supplement (even though your ferritin is acceptable), the thyroid med and an iron supplement will cancel each other out. Both need to be taken on an empty stomach, just not at the same time. As for the blood pressure meds, these are not generally viewed as causing problems with RLS. But everyone is different. And once again, better to wait to see what they say at Vanderbilt.

Thank you for your input. I know you are right and will continue taking the .25 mg pramipexole until I see the doctor in November.

Hi Conger just reading your post now. Congratulations on reducing as far as you have done! I agree with Steve. I suppose you could try going down to 0.125 but no lower, and just go back to 0.25 if it's too dreadful. Vanderbilt is an RLS Quality Care Center, so you should get knowledgeable care there. Let us know what happens!

Hi Conger-- I read your post and see that you were to see a RLS specialist at Vanderbilt. If you're still reading here, please let us know how things are going for you. It sounds like you've had a rough journey.