Had Gabapentin caused anyone’s RLS to flare or worsen??

[Tbone87]

I’ve only been on low dose gabapentin (300mg) for 10days. When it first kicks in I feel like my RLS will be under control but quit the opposite. After a few hours my RLS kicks in and has been worse these past 10 days then it was prior to starting Gabapentin. I also been getting these body jerks when trying to fall back to sleep! Like my whole body jerks (like that feeling your catching yourself from an fall) and I am wide awake again. I decided to stop taking it tonight and my RLS has hardly flared up tonight. I did need some relief so I used some medical cannabis but just can’t sleep due to my insomnia. Anyone experience this before? Thanks

[SueJohnson]

Gabapentin doesn't make RLS worse. It can cause involuntary contractions of muscles, muscle twitching and muscle pain. You might want to try switching to pregabalin. Although it is basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. The equivalent dose would be 50 mg.

[ChrisColumbus in reply to SueJohnson]

Sue: I know nothing about gabapentin, but at only 10 days in couldn't these symptoms just be in the initial adjustment period? Mayo Clinic re oral gabapentin says "Some side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine" and appears to suggest that (amongst many things) trembling or shaking, tingling in the hands and feet, twitching, and other unlisted reactions, could fall in this category.

mayoclinic.org/drugs-supple...

[SueJohnson in reply to ChrisColumbus]

Yes that's true.

[Tbone87 in reply to SueJohnson]

Thanks SueJohnson. I think I am going to request to switch to pregabalin. I was having headaches and also experience a day of mood changes (bad thoughts and anger) that was out of character for me. Should I request to increase dose? I know 300mg of gabapentin is starting dose. I think I need a lot more if this drug is going to help my RLS

[SueJohnson in reply to Tbone87]

I would start with 75 mg of pregabalin which is equivalent to 450 mg of gabapentin and then wait to see if you have the same side effects. If not you could increase by 25 mg every couple of days, again waiting to see if you have the same side effects. I wouldn't go past 150 mg though until 21 days after you started gabapentin since it takes that long to be fully effective.

[SueJohnson]

Or as Chris pointed out the side effects may go away as you get used to it.

[707twitcher]

I’ve experienced something similar. I’ve been off pramipexole for five weeks now, using Suboxone (buprenorphine). I tried pregabalin initially when coming off pramipexole, but stopped it when I found how well the Suboxone works for me. But I started it again last week to see what happens now that pramipexole is out of my system. 75mg at bedtime. RLS symptoms were worse on day four and five, requiring me to use more suboxone. So I stopped the pregabalin and was able to return to normal dose of Suboxone immediately. I’m guessing that damaged dopamine receptors from 12 years on pramipexole have something to do with this. Since the Suboxone works well for me, looks like I will just stay on it indefinitely.

[Tbone87 in reply to 707twitcher]

Well glad you found something that works. How much Suboxone are you taking?

[707twitcher in reply to Tbone87]

Still experimenting with dose. It does leave me a bit fatigued the next day, so I’m trying to find the smallest dose that works. For now, between 1/4 and 1/8 of a 2mg strip; so .25 to .5mg.

[Bigsorefeet]

hi, new to this forum , I was diagnosed with RSL , it’s only my toes on both feet that are sore, pins and needles and ache when I lye fat or put my feet up. Have been on about 4 different medicines, gabapentin etc, but nothing works , only thing they do is give me a good nights sleep. Going back to neurologist in Feb, I fear nothing will work .

[SueJohnson in reply to Bigsorefeet]

It may not be RLS. All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.

If you meet all of those conditions I can give you some advice - reply back here.

[Bigsorefeet in reply to SueJohnson]

Hi, thank you for the comments, I have the symptoms 2,3,4,5 not 1 , my neurologist is adament it’s not neuropathy. The toes on both my feet are burning but can feel cold, pins and needles like electric flowing through them , got an urge to wriggle my toes and was told that’s a symptom of RSL , grateful for any help, thanks

[SueJohnson in reply to Bigsorefeet]

Then you don't have RLS as the urge to move the legs is perhaps the most important of these.

[Bigsorefeet in reply to SueJohnson]

Thanks

[ScribblerCLT]

Yes, it might have even crippled me, I wouldn't touch it again

[Hotrodder]

Sue Johnson My whole saga of RLS began when I was prescribed Duloxetine for my depression about 10 years ago. The Duloxetine apparently caused my RLS. I was then prescribed Gabapentin as a first line treatment. The Gabapentin appeared to make it worse and left me very tired and in a fog for most of the day. I could actually fall asleep standing up in the middle of the day. As a result I was then prescribed Ropinirole to replace the Gabapentin which helped control the RLS a bit but caused augmentation and I needed to increase the doses at the same time. I am since weaning off Ropinirole and am down from 4mg a day to now .5mg at bedtime. I really don't have any idea what line of treatment after Ropinirole could be but I feel that I need to get off the Ropinirole. By the way, I have discontinued the Duloxetine about 3 weeks ago am searching for an anti-depressant that doesn't cause RLS as a side effect. (Any suggestions)

While weaning off Ropinirole I was supplementing it with Gabapentin 300mg in the morning and afternoon. The Gabapentin again made me feel in a fog all day and I could no longer drive for fear I would fall asleep at the wheel. I had my ferritin checked and it was 128 non fasting. I informed my GP that I would like to get it up to around 300 and he put me on Geritol for a month to see if that would raise my ferritin without getting an infusion.

I am really struggling now with the Ropinirole withdrawal and no anti-depressant. I have convinced my Doc that I need a low dose Oxycodone to get at least a few hours of sleep at night. He has reluctantly prescribed a 30 day 5mg per day. I don't think that will be sufficient as Mayo Clinic said one could take up to 30mg per day without any addiction issues and the 5mg doesn't appear to be the answer.

I am sooo looking for help and advice to get me through this.

I don't know if this will help anyone, but I feel better just talking about it.

Thanks

Hotrodder

[SueJohnson in reply to Hotrodder]

You are lucky you are in the US as there are 2 antidepressants that are safe for RLS - Wellbutrin and trazodone. Wellbutrin is the best and may even help RLS. Trazodone also helps anxiety and insomnia

The problem with oxycodone is it only lasts 4 to 6 hours so if not taken every 6 hours can cause mini withdrawals although there are some that are lucky enough not to have them.

Geritol won't help you raise your ferritin as it only has 18 mg of elemental iron. Take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout.Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

There is no reason to take gabapentin in the morning as RLS symptoms are at night when you want to be tired. It won't help in any case until you are off ropinirole for several weeks and your symptoms have settled. Let me give you my usual advice- forgive me if I have given it to you before:

To come off ropinirole, reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it. Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin . Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."

If you find after being on gabapentin for awhile that you are having brain fog, you might want to try switching to pregabalin. Although it is basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Divide the gabapentin amount by 6 to get the correct dose. You can switch directly.

If it is still a problem then you need to wean off it very slowly like 25 mg every 2 weeks and you will have no withdrawal effects. Then your option is a low dose opioid, but I would suggest buprenorphine rather than oxycodone as it lasts 24 hours.

On the reduction of ropinirole. If you find the above is still too much, you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.