Gabapentin doses : Hi. My neurologist... - Restless Legs Syn...

Restless Legs Syndrome

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Gabapentin doses

ToJa2 profile image
18 Replies

Hi.

My neurologist has suggested that I shouldn’t go over a dose of 1200mg Gabapentin. I’m currently taking 1300mg and she said I need to review this.

I did read on here that the maximum dose was much higher than this?

Any advice appreciated as I need to go back to her with further info. Btw the 1300mg I am taking doesn’t really work, it’s a bit hit and miss,

Thanks in advance

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ToJa2
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SueJohnson profile image
SueJohnson

Print out the appropriate section of the Mayo Clinic Updated Algorithm on RLS

Https://mayoclinicproceedings.org/a... and show it to your doctor. According to it "Most RLS patients require 1200 to 1800 mg of gabapentin daily." And the maximum is 3600 mg. Also, it is important that you take it the correct way: Take it 1-2 hours before bedtime. Since you need more than 600 mg take the other 600 mg 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. If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin.

ToJa2 profile image
ToJa2 in reply to SueJohnson

That’s great thank you. She is also suggesting that I reduce my dose down to 900mg. Is this safe to do this from 1200?

SueJohnson profile image
SueJohnson in reply to ToJa2

Don't do it. If 1200 mg is not enough, 900 mg is certainly not going to be enough. If she won't read the part from the Mayo Clinic and if she insists you reduce it, see another doctor or ask for a referral to a neurologist or sleep doctor. As far as whether it is safe, one needs to reduce very slowly or one will have withdrawal effects. If done slowly enough, one won't. Have you had your ferritin checked?

ToJa2 profile image
ToJa2 in reply to SueJohnson

I have but not the full iron check I don’t think. I need to try and make an appointment with my doctor for this.

When I do, what exactly do I ask for?

SueJohnson profile image
SueJohnson in reply to ToJa2

When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning as that is when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100. Improving it to that helps 60% of RLS patients. If your ferritin is less than 75 then take 2 tablets of 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it interferes with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.

ToJa2 profile image
ToJa2 in reply to SueJohnson

She is a neurologist so you would hope that she knows!!

SueJohnson profile image
SueJohnson in reply to ToJa2

Unfortunately most doctors are not up to date on the treatment for RLS. You are lucky in that she prescribed gabapentin as most doctors prescribe dopamine agonists which are a no, no today.

ToJa2 profile image
ToJa2 in reply to SueJohnson

Thank you Sue You have been very helpful

Daewood1949 profile image
Daewood1949 in reply to ToJa2

Sue always is

Daewood1949 profile image
Daewood1949 in reply to SueJohnson

Doctors do not study pharmacology. for alot of hours in med school. would ask my pharmacist about reducing it slowly. Sue is right. Withdrawal is terrible

Joolsg profile image
Joolsg

If you're in the UK, neurologists are not very familiar with RLS or the dose and timing of drugs. If your neurologist wants you to keep the dose to 1200, ask if you can switch to pregabalin as it's better absorbed than gabapentin and may work better for you. Gabapentin isn't absorbed as well at higher doses and that's why she may not want you to go above 1200mg.As you say, gabapentin isn't very effective for you so it may be an opportunity to switch to pregabalin or add a low dose opioid.

After augmentation on Ropinirole, many people don't respond to the Alpha2Delta ligands, according to Dr. Buchfuhrer. They didn't help my RLS at all, but did make me very sleepy.

ToJa2 profile image
ToJa2 in reply to Joolsg

Hi

I am in the UK.

I did try Pregabalin first but hated the side effects. I have very little side effects on Gabapentin.

I have managed to get another appointment but not until October which is better than nothing as it seems very hard to even speak to a neurologist at all these days.

In the meantime im going to try and get my ferritin properly checked.

Many thanks for the advice

Joolsg profile image
Joolsg in reply to ToJa2

Hope you get to speak to your neurologist soon. I never responded to gabapentin or pregabalin after augmentation on Ropinirole.Out of interest, who is your neurologist?

I'm now doing very well on low dose Buprenorphine.

67Waterman profile image
67Waterman in reply to ToJa2

What side effects did you have with Pregabalin? And when did you take it and how much? I have just changed from Gabapentin to Pregabalin so am curious. With thanks!

ToJa2 profile image
ToJa2 in reply to 67Waterman

I can’t remember the dose as was a while ago but I had terrible bloating, fluid retention and stomach cramps with it.

marsha2306 profile image
marsha2306

I take 2400 mg a day. I’m told that anything over 1200 at one time is ineffective. I take 900 in morning, 600 in afternoon and 900 in evening.

SueJohnson profile image
SueJohnson in reply to marsha2306

Actually any amount over 600 mg is not as well absorbed. For example if one's RLS was at night, the recommendation is to take up to 600 mg 1-2 hours before bedtime. If one needs more than 600 mg, take the extra 4 hours before bedtime and if one needs more than 1200 mg, take the extra 6 hours before bedtime. So you would be better off to split your 900 mg accordingly. And if you really need it all day, you would be better off taking Horizant which lasts 24 hours. I know it is expensive in the US and most insurances don't cover it. However Horizant has a prescription savings card which if you qualify for makes it inexpensive. horizant.com/savings

marsha2306 profile image
marsha2306 in reply to SueJohnson

I am doing what works for me and my doctor is a very prominent RLS expert at Hopkins. Thanks for your info but I am not even taking 1200 mg at one time anyway. I was merely pointing out the information ai was told by a very credible source.

I take 900 mg at 8 pm.

PS I also have nerve damage and need it.

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