Horizant

[LanaCSR]

Does anyone know if it takes a while for this medicine to start working and, if so, how long?

[Barb574]

Horizant makes me feel very dizzy and unsteady.....can’t seem to tolerate more than 1 300 mg pill....Limited results & bad side effects

[LanaCSR in reply to Barb574]

Regular gabapentin does that to me, but this is my second attempt at Horizant and I haven't had any issues.

[Joolsg]

Hi Lana

I note from your previous posts that you previously suffered augmentation on ropinirole and have absorption problems due to a gastric by pass. Iron infusion raised your ferritin to 254 and that gave you complete relief from RLS - but only for 2 weeks. Your levels probably dropped off because of the bypass. Have you had levels tested recently?

Some people on here report they only got relief from iron infusions when their serum ferritin was raised to above 350; one person when it was above 650.

I suspect your RLS is linked to iron absorption because of the gastric bypass. Regular infusions of Injectafer ( Ferrinject), say every 8 -12 months would probably resolve your RLS completely without the need for meds.

You also mentioned you were on Lyrica a year ago.

If Horizant is the only med you are now taking it should take a maximum of 2-3 weeks to become effective or quicker than that if you were still taking Lyrica until just before the Horizant because they are a similar class of meds.

Also check other triggers like anti histamines or benadryl cough medicine. I presume you are no longer taking ropinirole or the other dopamine agonists you mentioned previously.

I hope you manage to keep your iron high and that the Horizant starts to work for you.

[Madlegs1 in reply to Joolsg]

Also be careful not to take any magnesium within 3 hrs of the Horizant.

[LanaCSR in reply to Madlegs1]

Thank you!! Good to know!

[Dreamsleep in reply to Madlegs1]

Why is that? My doctor and my pharmacist said there are no interactions between the horizant and magnesium

[Madlegs1 in reply to Dreamsleep]

Both your Dr and pharmacist are incorrect. They really should know better.

Magnesium interacts with some 200 medications ( it binds with the active ingredients)

webmd.com/drugs/2/drug-1558...

[Kmoore464 in reply to Madlegs1]

I did take magnesium. Why is that not a good idea

[Madlegs1 in reply to Kmoore464]

The link explains explicitly that magnesium binds with Gabapentin/ Horizant and decreases its efficiency.

[LanaCSR in reply to Joolsg]

You are correct with the history on me. I recently had iron infusions about 2 months ago but they have not made a difference yet and I go back to see the doctor in about a month and hopefully will find out how my iron levels are doing at that point. But the RLS has just been getting worse. I had to get off of the Lyrica because of the side effects. I got off of the Requip awhile back because of the augmentation. So I felt my only choice was to go back to the Horizant which I was on about a year ago and did well on for a while but then it didn't seem to continue working as well but that was after a long period of being on it and trying tramadol at that point thinking that maybe all I needed was the tramadol. So I weaned myself off of the Horizant and my RLS did not get worse. So I just figured the Horizant wasn't working for me anymore. But my RLS has been so bad lately that I didn't know what to try. The iron infusions don't seem to have done anything yet and I didn't want to go back to anything that would augment and the Lyrica had bad side effects for me. So now I am trying Horizant again with my first dose being yesterday and I couldn't remember how long it took to start working for me the first time which is why I posted the question. Thank you for your response and for your queries.

[LanaCSR in reply to Joolsg]

Do you think based on what I have added in reply to your reply to my post that I am doing the right thing? I realize everybody is different, but I have heard of medication "holidays" when it stops working as well (or at all). So that's what I am trying with the Horizant. And thank you again, Joolsg, for taking the time to read my post and reply. Your opinions (and everybody else on here) mean a lot to me! I don't know how I could get through this without y'all.

[Joolsg in reply to LanaCSR]

I have heard that drug holidays reset all the receptors and then make the drugs work better when you start them again. It is mentioned in Dr Buchfuhrer’s medical text book. I would love to have the guts to try that but the thought of going drug free for over a month terrifies me.

Dr Buchfuhrer has told me in the past that he thinks the alpha2delta ligands don’t work so well for people who have augmented on dopamine agonists and I think that’s why Gabapentin didn’t work well for me initially. Lyrica (pregabalin) has worked better for me.

I think a drug holiday is a good idea if you can manage it.

I wish you good luck with it.

[LanaCSR in reply to Joolsg]

That is really interesting and very hopeful! I took a drug "holiday" from the Horizant, but I was on other meds during that holiday, mainly tramadol and Lyrica until I just couldn't stand the side effects from the Lyrica anymore. I definitely couldn't go without any medicine at all with this RLS. In fact, even though I was augmenting on the Requip, it worked really well as far as keeping my RLS symptoms at bay. My only complaint is it made me nauseous every time I took it. But even with that, if you tried to take my Requip away from me back then, I would've gone crazy...lol. And now to think that I was able to wean myself off of it after being on it for many years and not taking it anymore is such a freeing feeling. Of course, now I am taking tramadol and Horizant. So thankfully there are other options out there for me. And it may be my future to cycle through these medication holidays in order to keep this RLS from ruining my life. Joolsg, I don't know if this may help you or not, but I was prescribed gabapentin when I was early on in my RLS diagnosis and couldn't tolerate it at all. I was dizzy, bumping into walls, extremely sedated, nauseated, etc. But when my neurologist a few years later suggested the Horizant, he called it gabapentin and I told him I tried gabapentin and couldn't tolerate it. But he told me that Horizant is a different kind of gabapentin. So I decided to try it and it worked great for me for probably close to a year and then started not working as well. Honestly, I don't know if it's psychological, but I took my first dose getting back on the Horizant last night and I truly noticed my RLS wasn't as bad! Of course, that was around suppertime, and in the early morning hours it was really bad again. I have to work up to 2 times a day. So by Day 4 I will be on twice the dosage that I am currently on. Hopefully it won't take a full 3 weeks to work for me again. Maybe my body somehow remembers the Horizant and will make it work sooner than later this time? Good luck and thanks again!!

[Joolsg in reply to LanaCSR]

Sadly horizant is only available in the USA. We can't get it here in the UK. It's gabapentin Enacarbil and is much better absorbed than Gabapentin.

I wish you well on the tramadol and Horizant. We all try to juggle meds to achieve some respite from this horrid disease.

[LanaCSR in reply to Joolsg]

That sucks! I am so sorry to hear that. I will keep you in my thoughts and prayers. Only us who live with this disease know how difficult it can be. I am still suffering even as I type this, but I am hoping it will get better once I can increase the dose on Friday and not be because Horizant truly no longer works for me. I can't tell you how tempting it is to want to go ahead and jump up to the full dose, but I need to follow the rules. It is so hard to be patient when we are suffering. Ugh! I wish you well my friend.

[Sara_2611]

I dont know LanaCSR Im really sorry but ive never heard of it