Does Gabapentin lose its effectiveness over time?

[BAK524]

I was a little concerned to read on rlshelp.org the following about gabapentin:

"The effectiveness of this medication often diminishes after 1-2 years." I thought gabapentin had a better track record than this! I thought that it was the #1 "go to" drug for RLS. Please let me know if this drug has failed for you with extended continued use, and I'd love to hear from folks who have been using gabapentin successfully for many years.

[Elffindoe]

Lets hope it doesn't. I've been taking it since 2018. It' still OK so far.

[RKM7]

I’ve been taking Gabapentin since April. Initially it worked well and I enjoyed many nights of uninterrupted sleep without RLS symptoms. But I’ve had to increase my dose to 900mg (split dose). Some nights are better than others. I’m grateful for improvements but recognize I might not achieve 100% relief. I’m taking Gentle Iron every other night, not taking magnesium, trying yoga, avoiding food triggers - etc. I have a friend who also has severe RLS - she takes Gabapentin and a low dose opioid. She still has some nights with symptoms.

So I’m not sure if these are examples of diminished effectiveness or just the reality that Gabapentin only offers limited relief.

[Keaney27]

One of the first meds I trIed was Gabapentin, but for me after 18months and several increases in dosages it became less effective. After trying ropinirole and pramipexole I’m now (after seeing the neurologist) on Rotigotine Patches which have helped significantly for the last two years.

[Hidden in reply to Keaney27]

Interesting. Now that you're comfortable and sleeping reasonably well do you have an eye out for other avenues to improve your symptoms of RLS yet even more?

[Keaney27 in reply to Hidden]

At moment, not looking at any other avenues. If the rls deteriorates again the doc said they would move to 3mg of Rotigotine, but that is dependent on augmentation. I will just see how things go and cross any problems as they come.

[SueJohnson]

I have not heard of this anywhere else. They might mean you may need to increase your dose after1-2 years. Looking at the site, they list dopamine drugs before they list gabapentin, which does not make me trust the site.

[LotteM in reply to SueJohnson]

It is dr Buchfuhrer's site! It has been around quite a while and is rather old-fashioned in its webpage design. Also, he keeps adding information without editing the existing layout. I did get the impression he updates (older) text once in a while when new insights have emerged.

Essentially, it is a laydown of his experiences with very many patients. Do check out the many pages with letters from pages and his replies. Very informative.

[Woolfy1]

HiI have been taking gabapentin for about a year and a half. I take 900mg in split dose, it really worked for me every night initially. It still does help really well but most nights I will have a little bit of RLs, and some nights it feels like I have forgotten to take them! It's not always easy to find a reason for that. Alcohol definitely does make things worse.

I worry that the efficacy will reduce but for the time being I'm really pleased with them and will increase to 1200, if GP, agrees if needs be.

I'm curious if others have had a strange side effect? Has gabapentin affected your voice? I find I am much more hoarse..

Be interested to hear ..

[LotteM]

Thanks for posting fatniss. Rlshelp.org is dr Buchfuhrer's webpage and the info is based on his very extensive experiences with very many patients. He is one of USA's top RLS-experts. Actually, this observation is not different from what we read here. Note that it says "often". Also, keep in mind that most people on this site and I suspect most people that go to see dr Buchfuhrer have refractory RLS.

It will be interesting to find out whether this "often diminishes" applies to so-called 'naive' patients, thus people for whom gabapentin is their first medicines for RLS. Or whether it applies to all patients, and that maybe the diminished effect predominantly occurs in patients that previously augmented on a DA.

[BAK524 in reply to LotteM]

I'm thinking about the long term. If gabapentin/pregabalin eventually lose their efficacy, and dopamine agonists eventually lead to augmentation, should't we just move opioids to the top of the list?

[LotteM in reply to BAK524]

There are other aspects that may support your suggestion. Such as the fairly recent research into the relevance of the mu-receptor - to which opioids connect and exert their effect - in the instigation of RLS-like symptoms.

However. But. (Isn't there always one? Or more?).

Given the problems caused by opioid overdosing and the sentiment against them, it will be a long term thing indeed.

[Thursby]

I am very concerned re. GABAPENTIN CAUSING SEVERE irreversible brain dementia. It happened to my very conscious and cognitive mom. I sent the literature to her Canadian GP, and she did NOTHING about it......PLEASE be mindful of EVERY CHANGE you experience. It happened in just a few weeks......and she couldn't READ anymore!!!!!!

[Guitarpickin]

My neurologist said we build a tolerance to gabapentin and for some bizarre reason he said the tolerance is permanent. I questioned him about this (because it sounds crazy). He tried to explain how it is stored in our body or permanently alters some organ (maybe the liver or kidney or something). It literally made no sense to me because I’ve never heard of maintaining a tolerance to anything after abstaining. But because I couldn’t understand what he was saying, it means I didn’t retain it. Sorry. Wait, some part of it is coming back... I think he said our body (can’t remember which organ) becomes more efficient at processing the gabapentin, making it less effective over time and that the “memory” of how to process it efficiently is stored permanently in the tissues of the organ so that it never goes back to the baseline. Or something. Even though the “why” was unclear, I definitely remember being told we build a permanent tolerance.