Horizant

[tweedy66]

How much horizant is usually given. Just tried my 1st night with it. Saw no improvement....does it take awhile for good results to kick in? I'm still on 6mg ropinirole as well. Finally got an appt at mass general with a dr winkleman..... not until march!! Busy, popular specialist but i need help before then!!

[Joolsg]

Hi Tweedy,

6mg of Ropinirole is way too high and as it’s no longer working you could be augmenting so will need to reduce very slowly by 1 mg every 3 weeks and as you drop a dose, take tramadol or OxyContin to deal with the increased RLS you will experience.

Horizant will not help your RLS until you’re off Ropinirole for around 2 weeks.

Sorry I can’t give more positive news but until you’re through withdrawal the RLS won’t improve.

In the meantime get your serum ferritin checked and if it’s below 100 take ferrous bisglycinate every other night to get levels up.

Also take magnesium citrate 3 hours apart from the Horizant.

Jools

[rls_optimist in reply to Joolsg]

Hi, Tweedy. I generally agree with Jools, who is one of the most thoughtful and experienced members here. I'll just add a few things, from my own experience.

First, I see another neurologist in that same Sleep Lab at mass general, and have had good luck. Dr. Winkleman is the top expert there. He's the head of that lab, and he is a central figure in the latest research and publications on clinical guidelines; you'll be in very good hands with him. You may be able to get in to see him much sooner if you call the Sleep Lab every morning at 8 AM and see if he has a cancelation for that day.

When you see him:

- Have him refer you to a hematologist to get your iron (ferritin) levels tested, you may be a candidate for oral iron therapy, if not IV infusions.

- You definitely need to start reducing the ropinerole as Jools outlined. Discuss this (and the Horizant) with Dr. Winkleman. He will likely recommend taking an opioid during the process of reducing ropinerole. I've found methadone to be by far the best (and in his publications, he does, too). It is very effective but gentler than oxycodone (the other main option), it allows me to sleep better, and has less of a "high", so the next-day side effects are much milder for me (your mileage may vary).

- As Jools says, Horizant (or any other gabapentin-related drug) will not help much while you're reducing ropinerole: for that, the opioid is needed for the "heavy lifting" (as Dr. B puts it). But in between and after, it may help you. I am on a different DA (Neupro patch), but that's insufficient. I definitely get benefit from adding gabapentin. (Also: I have just gotten an iron infusion, and hope to reduce or eliminate the Neupro patch.)

- In the meantime: it may take several days for the Horizant to take full effect. If it fails to help after that, you may need to increase the Horizant amount. Also, make sure to take it no later than 5 PM, as recommended. Even 4 PM may help more; it takes several hours to reach full blood levels.

Good luck!

[tweedy66 in reply to rls_optimist]

And...forgot to mention how thrilled I was to hear about Dr. Winkleman....unfortunately I live in Vermont....southern, but it still is a 3 hour or so drive. I did mention this to the receptionist and she was going to make note that I would need a bit of a heads-up. Although....if they called some evening to offer an appt the next day..not too early...I would do it!! Can't imagine many people cancel ?!

[tweedy66 in reply to Joolsg]

Thank you!! Such helpful info....my PCP is trying but certainly doesn't have the knowledge I get from all you RLS sufferers.....only we know! Any advice, experience with Lyrica?

[Lindy14]

I agree with you Tweedy. He/she needs a preliminary assessment done by the "specialist" to get an idea of how his/her body has reacted to the initial prescription. We all know it can take a fair while to find the right combination, but it's worth the effort.

Some natural approaches alongside the medicines might help to ease the discomfort while he/she's waiting.

I find my medicines won't work totally by themselves and at night I need a means of keeping my legs cool so an electric mattress cooler works ALL NIGHT. They are expensive so it's worth trying a cheaper non-electric mat first to see if it's the change in temperature that can work for you. If you know someone who has one it's worth trying that first, or, as I found out, just take the covers off your lower leg while keeping them on your upper body when you're in bed.

What definitely "collared" this for me was a holiday when I forgot to take the cooler!!Hubby asked me to manage!! However, he found out they do have some value as I stayed in bed and he was on the receiving end of all the kicking!!

They should be doing more research down this alley as I think they'd save money on the extra tablets we're taking.

[CoMtWo]

Now after 7 months on Horizant (per what I see on this chat), how are you doing? Is that your sole RLS med at this point?

Last night was my first time on Horizant (600 mg - which I took at 6pm, but will try at 5:00 pm tonight). I've been on a combo of 0.50 mg of pramipexole and 400 mg of plain gabapentin for the last 8 years (had been on lots of other RLS-supportive meds that stopped working for me for the prior 5 years). About 3 years ago when I'd had to increase things I'd been using up to 0.75 pram and 700 gabapentin as the initial dosages I'd gotten of both seemed to "wear off"...but I didn't like being so medicated (along with stuff for high BP and Cholesterol), so in 2015 so I purchased the Relaxis pad and making myself use it (it took a while to tolerate it), I was able to get down to maintenance doses (what my sleep doc called maintenance - the 0.50 pram - which I now understand is too high, and 200 gab). Then after doing OK for about a year, I started realizing that the pram was acting up again - I started to eat uncontrollably and became very anxious. My RLS also started earlier/was nastier each day. My doc said to increase the pram, I resisted. Then he said that increasing the gab up to 600 or so was ok - which I tried for a while, leaving the pram the same "overdose" of 0.50 mg. I then pushed my doc into re-testing for iron/ferratin levels - which he'd initially said (when I first met him) were "ok at 57 for iron" - and yep, same mid 50's. So I then started feeding him literature and he agreed to supervise my iron increase. (325 ferrous sulfate, 250 vit c)

I'm up to 127 or so in iron and the other associated #s are up) and the sheer horrors of late afternoon/early evening RLS have abated somewhat, but even on the meds I was then taking until about 6 weeks ago (still 0.5 pram, 400-600 gabapentin) PLUS medical MJ from a vaping pen at bedtime) I felt things were really getting out of control relative to sleep - hardly any. I also felt that my 15 pound weight gain in the past 2 years was primarily due to the obsessive eating I'd begun and which while my doc resisted my self-diagnosis that it was the result of the pramipexole failure and causation of obsessive behavior - he'd seen it only when folks were on Parkinsons levels of pram), I figured that no, it wasn't "me" but the meds.

So I recently took about 6 weeks to taper off pram while upping the gab to 600 mg. So I've been off the pramipexole for a week, just subsisting on 600 and sometimes up to 700 mg of gabapentin.

My doc didn't think Horizont worked better but agreed to a trial. So last night was my first.

My CPAP machine says I slept 7 hours - but given how restless I was wearing it, I figure I actually got about 5-6 hours - but that's much better than the 2-3 that was my usual. My husband still has to leave to another bed around 2:00 am when my legs kicking around wake him up - but it DOES seem that by 2:30 or so, I'm getting some better sleep - at least from my one night's trial. Though I do have admit, that at 1:30, when I woke to go to the bathroom, I did take a hit on my med marijuana vape pen - which I'd been using for about 4 months. I tried to stay off it last night - but after lying in bed for 2.5 hours and not sleeping and beginning to fidigit more, I felt I needed (I'd usually taken 3-4 tokes, just did one last night). I'd tried to do 0 MJ when trying Horizant but just couldn't.

So my question to you is , after all this "TMI" is are your still on Horizant and if so, are you using it with anything else to help things? And how is it alone and/or the combo (and if combo, with what) is it working for you? I've 29 pills left of the free trial Horizant pills before heading back either to straight (much cheaper) gabapentin or trying to convince my doc to prescribe low dose methadone (he's really averse to doing anything like that - and I have to admit, I'm scared of opioids as well - my mother was addicted to phenobarbital when I was growing up - not a nice thing to group up with!!!.