Has anyone here found that Gabapentin loses its effectiveness? When I started taking gabapentin before my infusion and it really did help. It stopped my legs and helped me sleep. Now, I don’t think it is working and I want off of gabapentin
When I started, I quickly went up to 1800mg a day, gabapentin was helping. Once I got the infusion (iron sucrose 🙁)., I quickly went down to 900-1200mg.
I found the less I take, the more effective it is? I know this doesn’t make sense, but, if I take gabapentin at dinner and then before bed. When I wake up in the middle of the night, I try to go back to bed an hour or so later, my RLS is bad. ALMOST like rebound RLS?
So, last night I only took 300mg. I took it too close to bed so settling down was hard. I feel a bit more awake this morning. I also took ibuprofen, which I never do (sore neck from sleeping on the couch), so that helped
My original plan was to wait for my iron to come back up. I am supplementing daily with 650mg ferrous sulfate.
Has anyone eliminated gabapentin? What did you do? Was it hard? How long did it take?
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If you reduced the gabapentin after the iron infusion then if your symptoms were less, this is likely to be due to the infusion, not the reduction in gabapentin.
It is true that the proportion of gabapentin you take that is absorbed gets lower as the dose you take gets higher. If you take twice the dose, you don't absorb twice as much. I have read that taking more than 1200mg may not increase the amount you absorb significantly enough to make it worthwhile. So in reverse, if you reduce the dose, the amount you absorb may not get lower by much, but it will get lower.
If it were true that the less gabapentin you take, the less your RLS symptoms are that suggests the gabapentin is making your RLS worse. This would be augmentation and augmentation due to gabapentin, if not impossible is rare as augmentation is caused by an excess of dopamine and gabapentin is not dopaminergic.
The pattern in which you take the gabapentin can affect the results. Possibly the best way to take gabapentin is to take it two hours before bed, as it doesn't reach it's highest level in the blood for at least that long. You can increase the actual amount you absorb by splitting the dose, i.e. (approx) 2/3 of the total dose 2 hours before bed and 1/3 3 hours before that. If by "dinner" you mean a midday meal, this is way too early as at least half of it will have disappeared by midnight.
Furthermore, the higher the amount of gabapentin in your blood at bedtime, the longer it will last through the night.
Most people, I hear, stop taking gabapentin because of either its side effects or because of a reaction to it. If you're not experiencing either of thosr, there doesn't seem to be any real reason for stopping it.
However if you do wish to reduce it, you can do so in steps of 100mg. I did at one time reduce from 900mg to 300mg and I did it in 100mg steps every 2- 3 days.
Thanks Manerva, If I am learning anything, it is that I need to express myself better.
I was diagnosed in about 2015, immediately they put me on pramaxipolie/mirapex. I saw a Neurologist who did a memory test and told me ropinerole was my only hope and quadrupled the dosage. I did not know anything about augmentation and my wife and I decided the neurologist was a hack and I quit taking ropinerole. Suffered for 6 months. Found gabapentin online and asked my Doctor.
Was on Gabepentin for 6 months before I started my searches on Google scholar and PubMed. Gabapentin in the beginning helped stop my legs and gave me enough sleep to think, but like I said. Nobody bothered to check my iron. I figured this out by myself. I then went to my doctor and got an infusion of iron sucrose (5 of them, 200mg each time). It was a wild roller coaster, I felt really good for about a week and then started going backwards, not all the way, but noticeable. I have since learned Injectafer would have been the better choice. Since my ferritin was a 7, 5 years prior and a 30 on my last test, I think it is safe to say, I was low.
My last Ferritin, 8 weeks after my last infusion was 120. I am shooting for 200-300. My test is in mid February.
My issue is that the Gabapentin while it certainly helped when I needed it. Doesn't seem to be helping all that much anymore. It helps me sleep if I wake up every two hours and take more. Not my kinda thing. So, I have slowly been taking less. While I feel a bit cranky, I do think some of that is withdrawal. (sticky, no good feeling). So I am slowly taking less.
I don't think I am augmenting on it at all. I just don't think it is effective anymore. It kind of feels like a weight. I wish we had better words.
Everybody's experience is different and I envy you that you have apparently managed to get iron infusions which have given you some relief.
Of course, gabapentin can cease to be effective and if it's clear that this is the case then there is no point in continuing to take it. The way to reduce it is, I believe, is as I said.
To clarify my earlier post, before stopping it, it is a good idea to make sure that there isn't some other factor other than gabapentin ceasing to work.
My concern was that it doesn't seem possible that taking less will relieve RLS more because that would mean taking more would make symptoms worse. The only scenario I know where this happens is with augmentation.
Nonetheless, given that you have the ability to research about RLS and make your own judgements I should go with what you think is best.
I hope you do manage to get your ferritin up to your target level. That, all being well, should have a significant impact on your RLS.
See this excellent book from Amazon: “Restless legs syndrome - coping with those sleepless nights”by Buchfuhrer, Hemingway and Kushida. Probably the most up to date source of information.
perhaps this experiment is good news but it raises a question.
You have had an iron infusion but it didn't raise your ferritin level by as much as your doctor expected. Does this indicate something about your body's ability to absorb iron? I think we need an opinion from a blood expert. Is that a hematologist's job?
I presume you know that Doctor Buchfuhrer only recommends three types of iron infusion.
These are INFeD, Injectafer and Feraheme
Just for interest
Infed is also known as Pri-Dextra, and Dexferrum are the brand names available for this drug in the US. It is also known as iron Dextran. (Note Because fatal anaphylactic reactions have been reported after administration of iron dextran injection, the drug should be given only when resuscitation techniques and treatment of anaphylactic and anaphylactoid shock are readily available. (See BOXED WARNING and PRECAUTIONS: General, pertaining to immediate availability of epinephrine.))
Injectafer. . The active indredient is ferric carboxymaltose. Called Ferinject in Australia
Feraheme Active ingredient is ferumoxytol. Also brand name Rienso. ( Note: It is necessary to monitor patients for signs and symptoms of hypersensitivity for at least 30 minutes following Feraheme injection and limit administration of the drug only to when personnel and therapies are readily available for the treatment of hypersensitivity reactions)Label.
Thank you for the thoughtful response. I did not know anything back the. I was on my own at that time. Back then I trusted Doctors, not the internet.
I went to a neurologist at OHSU. He only did a memory test. I was in the throes of my disease. I failed the test. He told me ropinirole is my only hope. Then the neurologist quadruple the dose. Mind you I told him I was diagnosed anemic!
So after augmenting, my wife (a nurse) and I decided to just stop taking it. I never knew why until after I joined some support groups, I learned about DAWS. It was ugly.
When I determined it was my iron I did not know there was a difference in formulations. So I got iron sucrose. My bad. Did I mention I WAS going to the Doctor and a Neurologist?
So yeah, health care in Oregon is officially third world!
It never worked in the first place I guess my tolerance is high Lyrica help very much I diden tell have any withdrawal symptoms from stopping gabapentin..on 900 mg lyrics an 6 50 mg tramadol. An I haven't slept a wink rubbing my ankles my right leg is throbbing..even taking all that..I'm so sorry you have this as well Le'Roy
I haven't, but I've read on here that people decide to take 'drug holidays' when they stop taking a drug for a period of time because the said drug is no longer effective, but then they return to that drug later and it is effective again. Just mentioning this in case you decide to completely come off gabapentin, but then your RLS is so bad you have to go back on something and you don't (or can't) find anything else that works. All the best.
Thank you. It’s looking like getting off is not going to be an option. ☹️ I guess I will stay at 600mg if that works. On about 5-6pm and again at 9pm. I am hoping that is enough.
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