Gabapentin

[Penny/Pauline]

I was on mirapex for about 5 years and it was effective but then augmentation happened. So my doctor weaned me off of it and prescribed gabapentin 300mg. At first it worked well and I was able to sleep most of the night. Now I am not able to fall asleep until the early morning hours. I have asked my doctor for a prescription for Horizant, but my insurance has not yet approved it. Have others found that Horizant works better than gabapentin?

[Rustsmith]

The principle advantage that Horizant has over gabapentin is consistent adsorption in the gut. Once Horizant is in the blood stream, it becomes gabapentin. Gabapentin is only adsorbed by a short section of the intestinal tract, so it is difficult for some people to consistently get adsorption of the entire dose that was taken. So, if you take 300mg, you could get 50 mg tonight and 290 tomorrow. With Horizant, if you take 300mg, you get 300mg every day.

You also need to consider the fact that gabapentin is only effective for treating the movement side of RLS for about 65% of those with RLS.

If all that you need is help with falling asleep, then a higher dose of gabapentin might help. The 300mg that you are currently taking is the starter dose. I take 900mg to help me fall asleep and have been up to 1200mg. I know that others take even more than that.

[Penny/Pauline]

My insurance has now denied Horizant and my doctor has increased the dose of gabapentin to 600mg. The first night on this dose I fell asleep and slept most of the bight. But now most nights I cannot fall asleep—last night it was 3:30 before I could sleep. It seems that gabapentin is making my RLS worse. My insurance recommended that I try Lyrica/pregabalin. Have others found it more effective than gabapentin? Another question: I have hereditary hemochromatosis, which means my body absorbs too much iron. I have been deironed and am on maintenance phlebotomies. My doctor likes to keep my ferritin around 50, so I am wondering if the lower ferritin contributes to my RLS. Any experience with this?

[stjohnh]

... I have hereditary hemochromatosis, which means my body absorbs too much iron. I have been deironed and am on maintenance phlebotomies. My doctor likes to keep my ferritin around 50, so I am wondering if the lower ferritin contributes to my RLS. Any experience with this?

Penny/Pauline, you unfortunately have a nasty combination of illnesses. And, yes, unfortunately keeping your ferritin at 50 almost certainly makes your RLS symptoms worse. While people with hemochromatosis have increased iron in their bodies, they usually also have BID, Brain Iron Deficiency, the cause of RLS symptoms. Letting your ferritin rise through less frequent phlebotomies may make your RLS symptoms better, but will worsen the progression of organ damage from the hemochromatosis.

If your RLS is fairly mild you may be able to get satisfactory relief from gabapentin/Lyrica/Horizant, though for most with moderate and severe RLS, these medicines just aren't strong enough. If you can't get relief with these meds without intolerable side effects, probably your best course of action would be to add back the Mirapex at a tiny dose (1/2 of a 0.125mg tablet) while continuing the gabapentin. The other alternative would be to add an opioid to your current meds. Discuss with your doctors. Many people who have augmented on Mirapex, once they have been off it a month or so, can restart at a much lower dose and have a good response without resulting in augmentation, as long as the dose is kept very low.

[Penny/Pauline]

Thanks for your reply. My family doctor does not really know about RLS, and I don’t think the local sleep doctors do either. I also have sleep apnea, diagnosed after a sleep study about 7 years ago, but I don’t think that doc knows anything about RLS. So I am thinking of asking her for a referral to Mayo perhaps, or asking if she would consult with them. It is a distance away but I trust the doctors there.

[stjohnh]

... My family doctor does not really know about RLS, and I don’t think the local sleep doctors do either. ... I am thinking of asking her for a referral to Mayo perhaps...

Considering that you have two diseases, both with severe consequences, and in which standard treatment of one worsens the symptoms of the other, you really should see a specialist for each, and ask them to have a telephone conversation with each other to work out the best balance of treatment for each. In the meantime, perhaps try the gabapentin/Lyrica/Horizant, and if not satisfactory, ask your doc if there is any reason you should not add back a tiny dose of Mirapex.

[Bridgercan]

Thanks for your reply. My family doctor does not really know about RLS, and I don’t think the local sleep doctors do either. I also have sleep apnea, diagnosed after a sleep study about 7 years ago, but I don’t think that doc knows anything about RLS. So I am thinking of asking her for a referral to Mayo perhaps, or asking if she would consult with them. It is a distance away but I trust the doctors there.

Hey Penny/Pauline-having been to six sleep specialists (for both RLS and apnea), the doctors I’ve found to be most experienced in treating RLS are those coming from a neurological background. Those I saw who came from pulmonary background ran the gamut from barely acquainted with RLS to quite familiar with it. If you can get referred to Mayo, I’d recommend trying to get in to see a specialist coming from a neuro background and one whose profile lists RLS as a disease treated. If you’ve not already done so, check the Foundation’s list of Quality Care Centers too. Good luck!

[debbluebird]

Sorry to hear about your difficulties. I augmented with mirapex. I now take methadone 5 mg tabs, every 8 hours. I also take 600 mg gabapentin every 8 hours. I find spreading the meds out helps with insomnia. I can't take lyrics due to side affects.