Horizant

[veldon7]

I've been on Gabapentin 600mg in the evening for a couple mths. I've noticed increased appetite and fingers are swollen. I am still having to take Mirapex .5 to .75 at night. I want to stop the Mirapex, but the Gabapentin doesn't work by itself. I am thinking about trying Horizant, if I can afford it. Is the only difference in the Gabapentin the time release and absorbtion? I wonder if that will make a difference, and if I will be able to stop the Mirapex. I have gained about 20 lbs and have unctrolled eating binges.

[jakesmom]

I couldn't take the Horizant because it made me fall asleep at my desk. I, like you, want off Mirapex due to swelling. I have gained 80 pounds in the 10+ years I have been taking it. My current dose is 3mg divided dose. I am also on Lyrica and the swelling is getting worse.

[veldon7]

I asked a Pharmacist what is the difference in the Horizant and the Gabapentin, he said the only difference is that the Horizant is timed released and may last through the night, the Gabapentin wears off sooner and you have to take more of it, the Gabapentin may wear off in a few hours, but it's cheaper, and it's the same drug. I have not had much relief with Gabapentin, and I still have to take the Mirapex, so I don't know why I should take it if I still have to take Mirapex. It also can cause breast swelling, I have noticed that I have had breast swelling and I have large breasts, so I don't need this! The Requip doesn't work as well for me, but I am tempted to try it again because the Mirapex caused binge eating. Does anyone know if the Requip causes binge eating?

[jakesmom]

I Googled it. Yes, Requip is also linked to compulsive behaviors like eating and gambling.

[jakesmom]

Have you tried Neupro? It is a patch. If you haven't, ask about it and ask for samples. I had no side effects at a low dose, but I needed 6mg and it caused nausea. It is pricey, but the company has a discount coupon that makes the cost to you around $30.

My neuro is great about giving me samples and has saved me a fortune in failed attempts. Unfortunately I have $500 worth of samples that I can't use.

My current trial is Lyrica. I love the way I feel, but to made a dent in the swelling caused by Mirapex and lyrica, I have to drink a gallon of water a day.

[veldon7]

Thanks for the info., I am still taking Gabapentin, but it's not really helping the RLS, and the Mirapex can cause heart problems too, from what I read, and I've been having chest pains off and on for a couple years, too bad it has all these side effects, because it usually works for me, even only taking .5 to .75, the Requip doesn't work as well. I will ask about Neupro, do you still have to take the Mirapex with it?

[debbluebird]

I didn't read all the way back on this thread, so sorry if I am repeating. It sounds like you need to add an opioid.

[pjmccoy1]

Have you tried Neupro? It is a patch. If you haven't, ask about it and ask for samples. I had no side effects at a low dose, but I needed 6mg and it caused nausea. It is pricey, but the company has a discount coupon that makes the cost to you around $30.

My neuro is great about giving me samples and has saved me a fortune in failed attempts. Unfortunately I have $500 worth of samples that I can't use.

My current trial is Lyrica. I love the way I feel, but to made a dent in the swelling caused by Mirapex and lyrica, I have to drink a gallon of water a day.

Jakesmom,
Why did you stop Neupro patch? I was on Horizant, taken off due to severe depression. Then new RLS specialist put me back on it with hopes could treat around depression. Unfortunately, my depression drug (zoloft--yes a "no no" in RLS land) which works for me, now causes RLS to flair up earlier in day and progressing up the thighs so had to stop. And depression has returned with a vengeance. Only taking St. John's Wort to control but I am planning to get off Horizant next week after psychiatrist visit. I've never had this kind of depression ever and it's been horrific since Oct 2013. I don't think Lyrica will be an option either due to same family - Gabapentin and depression issues. I have never had this kind of depression - wanting to die, wouldn't consider suicide due to my faith, thank GOD, but think about it a lot. Just want to sleep forever, weariness and burden on family to subside. Tried Neupo Patch but it drove me mad for about 3 days and quit it. Horizant also causes teeth pain and sensitivity probably due to teeth clenching and grinding. And achy joints, pain in thighs and RLS gets worse right but manageable right after I take it. Yet about 1 hour before I take it, RLS is also flaring up too. But sleep is better. I'm mortified to take opiates. Mortified.... what if I start them and I need more. I'm 52 so feeling like it's too early to go down that path based on everything I read you eventually will develop tolerance and need and more.

[ViewsAskew]

PJ - I know I can't help you feel differently. I hope that if you think about these things, you might come to a different place about opioids.

In studies, people with WED/RLS rarely get addicted to opioids - it's lower than the regular population. And, it's only about 7% in the regular population. They're not sure why it happens less to us, but we rarely have issues.. We do have dependence - meaning our bodies get used to it and if we stop abruptly, we get sick. So, we taper. And, sometimes, we do get tolerance, meaning we need a higher dosage to get the same results. But, it's not that common. Several people here have taken the same dose of opioids for years.

But, there is an exceedingly easy way to prevent any of these things. It's called a drug holiday. If you take opioids for 10 days, take 3 or 4 days off, then go back to opioids. If you can take pramipexole or ropinerole, they make a great sub on the 3-4 days you do not take opioids.

I hear you on the depression with the alpha delta ligand drugs - Gabapentin and its sister drugs. They definitely affect me, too. I didn't stay on long enough to get suicidal, but another of the mods did. It was terrible.

BTW - have you had a serum ferritin and a hemoglobin test? Please get both if you have not. And, ask for the actual results, not just whether it was OK. Let us know.

[debbluebird]

I took Gabapentin and did ok. I took Lyrica and I was depressed and suicidal. Now I take Methadone. Have taken it for 3 1/2 years. I take 5 mg. I started with 1/2 tab. It caused nausea at first. After several months that stopped and never came back. When I was on gabapentin I was taking five different drugs and was a mess. I started methadone and was able to get off everything but that. Now I take 5 mg 2 to 3 tabs throughout the night and evening. I never go over that. I feel so much better. I'm sleeping, and I'm not a mess during the day. I am no longer depressed. My doctor felt better about methadone instead of oxycodone. I had taken darvocet before they took it off the market. That was when I was taking the five drugs.
Do go and get your ferritin checked. Also if my WED/PLM ever got worse I would alternate the methadone and pramipexole. I think that's the best way to go too. But we are all different and you should do what is best for you.

[CarolWR]

This thread about Horizant really proves again that people react so differently to meds. My experience....I received uneven help from gabapentin and could not tolerate the side effects of Mirapex and Requip. Horizant has definitely helped me, and I don't have the morning lethargy that I hear about in the postings. I was told that the 600 mg. pill is all that should be taken dairly...that additional ones wouldn't make it work better...so that's all I take.

I supplement the Horizant with the use of a king size heating pad that does not turn off automatically. I lay it over my thighs and tuck in, or put it vertically under my legs with a cloth on top....set for medium heat. Most of the time this works, along with getting up 1-2x per night to stretch. Without the Horizant component I'd be getting little sleep.

[pjmccoy1]

Thank you for your response. I hope I didn't offend anyone about my fears of opiates. By no means did I mean to come across judgmental. Just fearful. I guess I haven't seen any long term studies about the tolerance and dependence stats. Fortunately, my RLS is not as horrific as I have seen many that suffer with this crazy syndrome, or auto immude disease, whatever it is. And I don't know which came first, chicken or the egg, Zoloft cause RLS but was managed for 8+ wonderful years with Clonazepam and Sinemet. I loved Sinemet, but augmentation started and I've been off that since Fall of 2012. I was taking Horizant along with Sinemet and started feeling really bad but couldn't pinpoint it. But for me, it was the Horizant. And yes, it helps with RLS but I've been back on it 4 weeks now and it's wearing off and I get some flair up during the day during sedentary job (acctg work). I'm started a new anti depressant (certain it will drive RLS wild again as it's not on the "approved RLS anti depressant list") and will be tritrating off Horizant even though most people can stop it abruptly without any withdrawl symptoms. Not my experience. Here's my question for those who have had successful treatment with opiates, how long before you have to do drug holiday or dial up dose? And, this is my OCD and anxiety kicking in, what happens if I take the opiates long term and then I get really sick and need something for pain and nothing will work because I've become tolerant to pain killers? I just don't have pain with my RLS so I don't understand the opiates connection. I have some achiness in my thighs but not what I would describe as pain. I've been told by 2 Neuro's and a Psych I am a very complex case because of depression on top of the RLS and failing or unable to tolerate the firstline RLS Rx's. That's not very encouraging. Anyhow, I sincerely appreciate your feedback, and again, I apologize if my questions about opiates offended anyone. That was never my intention. It's just my own fears and issues.

[Rustsmith]

PJ, I can promise you that your questions about opiates have not offended anyone.

I am like you in several respects. My WED occurs without pain, but I have severe urge-to-move issues and rampant insomnia if I am not properly medicated. I am somewhat fortunate to be new to treatment (after 8 miserable years). As such, I have not yet progressed to the point of needing opiates. After reading a number of the discussions that found on this board, I realize that they are probably in my future but I don't want to complicate my life with them until I need them. You see, I am a competitive runner and am occasionally subject to drug testing. All but the lowest level opiates are on the US Anti-Doping Agency's banned list. So if I make the change, I will have to be very careful in the selection of which events that I enter so that I don't end up like a number of the pro-cyclists who are now banned from all forms of competitive athletics (even at the amateur level). There are also some work related issues that I would rather not have to deal with.

As for your questions about experiences, I will leave those comments to those who use those medications.

[Polar Bear]

No offence taken at all. We all have different opinions and fears and needs.

I use opiates together with ropinerole/requip.
They are at the lower end of the spectrum i.e. Tramadol and Codeine, I've been using them for perhaps 3 years without increase, although recently the Tramadol was changed to the slow release and is much better. I've never had a drug holiday.

You say that you don't have pain with your WED/RLS. Neither do I, not in the conventional sense. But my creepy crawling symptoms are 24/7 and without medication are intolerable, and so I would would define intolerable as pain.... that is only my own opinion.

You question what would happen if you ever needed pain relief following surgery. I would hope that pain meds at the lower end of the scale would be sufficient for WED.
As for myself, without my medication my lifestyle would be so bad that at present I take whatever it takes and hope that if I ever needed pain relief following surgery that I would still have many options. On the other hand, my DIL who is a palliative care nurse said (in a caring way) that she hopes I never need pain relief.

[ViewsAskew]

PJ - not at all judgmental. As you said, you sounded afraid. I just wanted you to know that it doesn't have to be so scary. No one here wants you to take anything you don't want to (or take anything if you do not want) - just to know the facts so you can make the best choice for you.

Your new AD may not make it worse. The research shows that most ADs may worsen it, but that none always worsen it. In the ones they reviewed, they found that some had as low as 2% chance of increasing WED; the highest was 20%. Even at 20%, you've an 80% chance it will not. So, here's hoping .

One of our members, Neco, has used the same dose of opioids for many years - no increase ever. Debbie, who posted above, has not needed an increase. I, on the other hand, did. For me, the first increase was soon - the doctor said it was likely I didn't have enough to start. The next came at about the year mark. Since the literature shows people using the same dose for up to 7 years (the study was for 7 years), the doc assumed I just had worsening symptoms. And, it could have been. But, I think it was tolerance. I refused the next increase and tried other options.

Eventually, I stumbled on alternating pramipexole and an opioid - every other day. I used that for a few years - no augmentation, no increases, no dependence, no anything except depression from the pramipexole. It always had weird emotional effects on me - but the depression was truly terrible. Particularly because I'd get better on the day off, then worse. That roller coaster was awful.

I've been back on methadone - alone - for a year. No signs of any tolerance yet. And, it's at the same dose I used when I took it when I needed that last increase. So, essentially, for about 5 years I've been at this dose.

Several people here have had surgery while using opioids. It's never been an issue. I've had two broken bones in my hands - it wasn't an issue for me, either.

I don't have pain, either - mine is what I call the electrical kind. They aren't sure yet, but in some research the endogenous opioid system was implicated as being part of WED. Years go, in the 40's, Dr Ekbom realized that opioids helped almost all people with WED. Sure, some of us can't tolerate them, but if you can tolerate them, they almost always work. Again, no one knows why. But, they don't know why the other drugs work, either, because they still don't know the cause of WED!

I was going to say something else, but the refrigerator delivery people came and now I have no clue what it was .

The best thing, in my opinion (and not a humble one regarding this) is to become as educated about the disease as you can. Buying the book, CLinical Management of Restless Legs Syndrome, helped me tremendously. The second edition is out, so if you decide to buy it, do please by the newest one.