What's Worked for Me

[dwhite00]

I am writing this in the hope that my history will be helpful to others with RLS, since my symptoms are now being effectively managed. Like many with RLS, my doctor prescribed a low dose of Pramipexole (Mirapex) for the condition. After several years of regular use, I started having trouble sleeping, even though I did not have outward manifestations of restless legs. I went to a sleep therapist, who told me that, even though my legs weren't moving around, the RLS could still be keeping me from sleeping. He upped the dosage and, sure enough, I started sleeping well again. This lasted for a couple years, and I started having trouble sleeping again. My doctor upped the dosage of the Pramipexole to the maximum amount, and I was able to sleep pretty effectively again. This lasted another couple of years until I again started waking during the night and not being able to go back to sleep. Since the problem was not with initially going to sleep but rather, with staying asleep, I started taking half my dose at dinner, and the other half at bedtime, This improved my sleep, but I was still not getting enough sleep. I went back to a sleep doctor and he prescribed a low dose of Gabapentin to take with my half-dose of Pramipexole at bedtime. I am now sleeping very well and do not have any syptoms of RLS. Hope something in here will help someone who's having trouble.

[stjohnh]

Welcom dwhite00. I'm glad you found us.

Sounds like you are doing well. I hope it continues. You didn't say what your current dose of pramipexole is, but likely you are above the max current recommended dose, which is much lower than the FDA approved doses. This means that you are likely to develop augmentation, a worsening of symptoms that doesn't respond to dose increases.

The meds that help RLS patients sleep better, once the urge to move is controlled, are gabapentin (and its relatives Lyrica and Horizant) and medical marijuana. There are others that have helped a few people, but only gabapentin and marijuana seem to help the majority of RLS patients. If you start having worsening symptoms you should try to get your doc to give you IV Iron infusions.

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub

[Polar Bear]

I note you sleeping with the help of gabapentin and I hope this continues to work for a long time..

I used to take ropinerole which is similar to pramipexole but after many years usage I augmented and spent a long time weaning off. Lyrica, a sister drug to gabapentin is one meds I take for my RLS but unfortunately it does not help with my insomnia.

[badnights]

Hi dwhite00. As Holland noted, pramipexole and other dopamine agonists cause RLS/WED augmentation - that is, they worsen the disease over time. Unfortunately, this is such an unusual phenomenon that many doctors aren't aware of it, or if they've heard of it, they don't know how to deal with it.

Preventing augmentation in the first place would be ideal, but since you have already had a number of dose increases, you are probably already in an augmented state (it is probably not natural progression of the disease that caused the worsening - it is almost always augmentation). Nevertheless: keeping the dose as low as possible and keeping your serum ferritin as high as possible would have helped prevent augmentation, and doing those things might help keep it from getting worse. You should get your iron status checked, including a check of ferritin concentration. If your ferritin is under 100, you should probably supplement with oral iron (and vitamin C to maximize absorption of the iron). Holland has provided information on an even better solution, which is IV iron.

At some point, even if you supplement with iron, your current combination of medications may cease working for you. It would be good if you had a plan in case that happens, so arm yourself with knowledge. You can read up on augmentation on this board by typing augmentation in the search box (upper right); it takes a while to wade through the various Topics, and there are some very distressing stories, but there's a lot of useful information in there. You could also go the Foundation's publications page and download some of their brochures on augmentation - I think they have 4. Their brochures have very correct information in them, and are good things to show your doctor, although they totally miss the emotional impact of augmentation. There is more information on augmentation in the link in my signature block.

[dwhite00]

I've had RLS for over 20 years, and I think those of us who have had it a long time got stuck with augmentation due to the lack of therapies that would not cause it. My doctor was aware that I would need to keep increasing the dose of Pramipexole, and when I asked him what we would do when I reached the maximun dose, he just said we'd cross that bridge when we came to it. When we came to that bridge, I started taking Gabapentin. I have been taking supplemental iron and Vitamin C for many years and my blood levels are all in the normal range.