Safe to take Gabapentin for life?

[Nightbird11]

I haven’t been able to find any reliable info on whether Gabapentin is safe to take for life (30+ years), specifically for severe PLMD with pain. My husband has this and has not started it yet, as his neurology visit isn’t until later this week. His case seems to be different than any we have read about, maybe someone here has experience though as there are some incredibly knowledgeable and helpful folks here (for which I am so grateful, thank you). His legs jerk all night and he wakes up feeling exhausted, dehydrated, and with extreme leg pain- sometimes bruising on the backs of his knees or on his big toes (joint where toe meets foot). An electrolyte drink like LMNT or Electrolit helps him to feel semi-human in the morning, though still extremely exhausted and in pain. He suddenly has no quality of life and is bedridden at 59 and in near constant pain thru the day, which eventually subsides by night, only to start all over again in the morning. He saw Dr. Buchfuhrer 6 mos or more ago, who said he had never heard of anything like this and did not think PLMD and then recommended he see a neurologist. Dr. B did however recommend Gabapentin, as my husband has occasionally had bouts of RLS and PLMD in their typical forms for 15 years. This new severe thing I describe above came on suddenly over the past several months. His diet is very good/healthy, he takes supplements to support legs (b12, magnesium, vit d, omega 3, turmeric), P.E.A. as recommended by functional med dr., and plenty of water. Occasional MM use for help with sleep and pain. No alcohol, no nicotine, no sugar. Sorry for the very long post. We are just feeling lost. Any thoughts from anyone here on what this is and if he should give Gabapentin a try as well as how long it’s safe to take? Thank you in advance.

[SueJohnson]

Yes one can take gabapentin for life. I am on it at age 82 and will be doing so.

[Nightbird11 in reply to SueJohnson]

Thank you Sue for your reply. If I may ask, how long have you been taking it? Trying to determine if my husband started taking it now at 59 could he safely and effectively take it til he reached your age or beyond? The drs we have consulted say they don’t know, which is troubling.

[SueJohnson in reply to Nightbird11]

I have been taking it for almost 3 years.

[Joolsg]

Has your husband had a viral illness in the 6 months before the sudden worsening? Viruses, including Covid, can trigger leg jerks. If Dr Buchfuhrer recommends seeing a neurologist, I would certainly follow that advice. He's one of the top experts in the world.ncbi.nlm.nih.gov/pmc/articl....

[Nightbird11 in reply to Joolsg]

Thank you, Joolsg. We will be seeing a neurologist on Friday, after waiting for an appt for 4 months. No known virus in the last 6 mos (thankfully have managed to avoid C so far and the flu). But we have also had vaxxes for both…who knows what that may have caused? Though it’s interesting (to me) that I would be fine and he is in a horrible state, possibly from the same vaccine. Again, I guess we just chalk it up to the good ol’ “everyone is different” adage. Years ago, also years after the PLMD began (much more mild then), he was diagnosed with Lyme disease, yet had no Lyme symptoms. Just was tested on a whim due to the “weird” PLMD sensations he reported to his PC physician. So that is something that stands out in his history. That said, he did 2 rounds of Doxycycline and was cleared of it (much reduced viral load). Just 2 weeks ago we requested another Lyme test, just to be sure, and nope. It was completely clear. Thanks for your reply, I really appreciate it and wish you well.

[Amrob]

Personally i wouldn't be worried about whether it's possible to take something for life (and i'm a good decade younger than your husband). Provided a medication is deemed safe in the short to mid term, i think it's actual benefits likely outweigh it's potential risks. Your husband sounds like he desperately needs some quality of life. I have severe PLMD and there's no question i require medication to control it at this point in time. I'm optimistic there'll be breakthroughs in medical research and therapies not far into the future. This means he probably won't have to take gabapentin for life.

[Amrob]

I haven't heard of pain being part of PLMD before. Has your husband had a sleep study? My understanding is that PLMD is usually straightforward to diagnose with a sleep study as it typically follows a pattern of repetitive movements. I have observed PLMD in two others (beyond myself) and it's almost unmistakeable once you know it.

[Nightbird11 in reply to Amrob]

Yes he has had a sleep study and it was diagnosed. He has the typical movements with the toe flexing/ankle flexing. I have watched it many a night. He also has developed much more intense jerking of his legs and hips along with that. All of it causes him leg pain, but not always. Definitely the fatigue, brain fog, headaches and a weak / nauseous feeling like he might pass out upon waking and for hours later sometimes. He’ll have huge bags and gray coloring in his face too. Electrolytes seem to help a little bit. Thanks for your replies. I agree with your previous comment about Gabapentin and not to worry. You make very valid points.

[bookish]

Hi, just be aware that gabapentin may affect folate and possibly B12 levels, especially over a long period of time ( nature.com/articles/nrneuro... ). I was on gabapentin for nerve pain/neuropathy along with some other meds, for 14 years or so, but had an underlying folate/B12 issue which had not been diagnosed. It got worse, I came off the meds 9 years ago and am better now with (self) treatment of the underlying deficiencies. None were easy to get off, magnesium helped and continues to help me considerably. Is your husband already gluten-free? If not, would be well worth a trial. Cheers

[Nightbird11 in reply to bookish]

Thanks Bookish. Glad to hear you are better now. He has had all labs done and all are normal except ferritin is on the low end for RLS sufferers at around 70. He was vegetarian for a long time and we guess that was what caused it. He takes a Heme iron supp daily and his level is going up. He is not gluten free and is also not Celiac. But maybe it is worth a try. He will do anything now.

[Whippetmama]

I've been taking gabapentin (and now pregabalin) for 50+ years with no side effects. I don't think you need to worry about that.

[Nightbird11 in reply to Whippetmama]

Thank you. That’s reassuring to hear Whilpetmama. I’m glad it’s worked for you for so long!