Gabapentin for lupus pain

[BonnyB]

Hi, does anyone take gabapentin for lupus pain? Wanting some advice on how or if this has helped you, thank you.

[sgipps]

Hi I,ve taken this for a month on a trial and the dizzyness was awful helped the pains but stopped after that

[Wytchylady]

Hi Bonnie. I was on Gabapentin for a few months. It helped as a nerve block. Eventually reduced it as I didn't want to stay on it indefinitely. X

[KnitSewPurl]

Hi Bonnie ,My husband was taking it not lupus related for quite a while for nerve pain post surgery and he hated it alot. Could not wait to come off it as soon as possible. He could not function or do his job properly great as a nerve pain. He was on the lowest dose he could be on.

I know what Gaba can do to a person and seen what it can do . So I myself as a lupus sufferers am not keen to go on it when it was suggested to me recently. It was even shocked when it was suggested. When I am stable on my current meds and still not up to my maximum dose. So yes,

May I ask why Gabapentins when there is loads of other drugs available on the market that can help with the pain .

Unless you have been through on all other drugs or allergic to them them yes possible option.

Gaba is also quite addictive. Like all drugs you have to stay on it for a specified time. Then wean yourself off it or stay on it .

Hopefully you will weight the pros and cons and come to a decision .

All the best xx

[BonnyB]

Thank you everyone. Been on it a while. At first it helped with pain but I'm not sure it's affective now. Was awful when I first started. It helps me to relax and sleep. I'm at rheumatology appointment next week, going to discuss it with her then as she won't know I'm on it as not seen her for over a year. In hindsight I don't know if this Dr just prescribed to shut me up from moaning as I was in a flare. X

[dg70]

Yes I do. I only take one at night as two made me too groggy. Its brilliant. For the first time in a few years I slept at night. It totally covered night pain and aches but it does make me Dizzy. I get up for the loo and bash about a bit but it's worth it for sleep. I don't take it in the day yet as I'm often driving and couldn't do that on gabapentin. I will have to think about it though as pain gets worse. I was given amitryptaline first and found it awful, didn't stop pain and gave me horrendous nightmares. Hope it works for you.

[Chris21]

I’ve not taken gabapentin but do take pregabalin for neuropathy pain. The rheumatologist suggested I take it as I was getting ‘electric’ shocks, feeling of insects crawling on arms & legs which also disturbed my sleep. I was very reluctant as had read it was an opioid. I’d tried amitriptyline and another that can’t remember name. Both made my mouth too dry, not great with sjogrens. Eventually I went and had a straight chat with GP and told her my concerns, she pointed out that any medication we take, we can become addicted too. She said I should take 600 mg a day but we’d start on the lowest dose possible but not too expect to see any difference but we’d work up slowly to the correct amount. That was over a year ago and Im Still only on 100mg a day but it’s enough to keep the shocks n crawling feeling away. It also made me feel better after talking to the nerve people when he said it’s just a sedative to settle the nerves. 🤷‍♀️ the only problem I had (GP had warned me not to drive for a few days) was I felt drunk and didn’t have a care in the world (quite a nice feeling it some ways 😄) but it wore off and since then I’ve had no problem. Some may say why stay on it at such a low dose but why not if it helps?

Do have a good chat with your rheumatologist next week and hope you come up with a solution that’s best for you. 🙂

[KnitSewPurl in reply to Chris21]

Funny / strange though no one even suggested Nortriptyline this is an alternative for amitriptyline. When they wanted me to go on amitriptyline I said no I wanted Nortriptyline, so they did give me Nortriptyline as it was non drowsy as amitriptyline. I am on quite a low dose now was on a hefty dose along time ago it has help alot with the nerve and pins and needles.

Recently Pain clinic tried to suggest all sorts of meds to me trying to switch my meds. Especially my pain meds I just said no. Whilst I am stable I am not going to switch any of the meds to make it worse.

I don't want To find I cannot function and do my work . I am only a slight build person a small amount of high dosed drug would whacked me like a ton of bricks. And I find I cannot function at all totally out useless asleep. Which I cannot afford.😅 Not in this moment in time too much precious time to waste on sleeping...

[Chris21 in reply to KnitSewPurl]

yes, there’ll be plenty of time to sleep later on in life 😊 I think they like to suggest changing meds because our system can get too used to a medicine that we’ve been taking a long time and can stop working, so rather than upping the dose we’re on changing it to a different one with a lower dose. We’ll have different meds that we personally prefer and if it helps why not stick with it 🙂

[Cottar]

Hi BonnyB, I’ve taken gabapentin for over 10 years for chronic pain and it has really helped a lot, the pain is now bearable but I know that, like all medications, everyone reacts differently. I would suggest giving it a try and seeing how it works for you, I must say that the pain relief was pretty instant for me and it changed my life. Good luck and I hope you find something that helps.

[lupime]

I have been on gabapentin for over a year and have found it very helpful . I went on it for erythromelalgia burning pain in my feet and it has dulled that to a copeable level. Coincidentally it has also helped with sharp electrical like pains elsewhere which my rheumatologist says is fibromyalgia. I haven't had any bad side effects other than dry mouth, which is not good as I have Sjoegrens . I am on a high dose 1400 mg which I hope to reduce at some point.

[CavendishCool]

Really sorry, but this was the first medication I was taken off of on entering hospital after being on it for 4 months. The private pharmacist was not impressed. Tbh, it didn't do much for the nerve pain I was experiencing. I take Amitryptalin instead which does help to take the edge off the pain, but it doesn't get rid of it all. Apologies for being so negative. 🙏

[Little_duck]

I am on pregabalin which seems better out the 2. Its helping but not 100%

[marypw]

Do remember we’re all different, but personally I hated gabapentin and pregabalin because I felt like I was on another planet, so didn’t take either of them for more than a couple of days. But I’m fine with 20 mg amitriptyline which helps me sleep, so I’ve been on that for years.

Good luck next week.

[chrisj]

I take one 300m capsule at night to ease the burning in my legs and its done its job, helps with sleep as well. Yes it leaves me feeling groggy in the mornings but it soon wears off so for me its worth it.

[MrsMarigold]

I do take a very high dose of gabapentin. It is not considered an opioid here in States but I know it has been under review. For people like me, a terrible spinal condition after 2 surgeries/ cervical spine, Erythromyalgia, electrical shocks due to spine, neuropathic pain and more I’m thankful for it. I never was dizzy from it or had a bad reaction. My dose is about 1800 mg a day. This med is not for my lupus at all. Without it I would be unable to walk.

[smudge]

It is difficult Bonnie as we are all different with different meds but it is about trial an error.I was on Gabapentin 300mg 4 times daily for about 6 years and it was fine for me until, I believe the menopause, my symptoms were much worse. My Rheumatologist suggest I either try Duloxitine or Pregablin which I had tried 10 years ago and no adverse resctions were noted on my file. So I reluctantly agreed to which I was prescribed Duloxitine for 6 weeks and I had very little to no sleep, I was very anxious, emotional and shaky. When I finished the trial, my GP said that it clearly states on my records that Duloxitine disturbed my sleep as you can imagine this really annoyed me. So I also reluctantly agreed to trialling Pregablin to which for me as I increased the does my weight rapidly increased so I wanted to stop as I didn't need weight issues on top of what they already can't control. I waited 9 months for a Pain clinic appointment which I have so far tried Tapentadol which was not helping sufficiently enough with the pain.

I have previously tried Amitriptyline for nerve pain in my shoulder but this made me wide awake!

I am now awaiting to trial another med with the pain clinic. I also have an appointment with my Rheumatologist this week which I need to ask about Hydroxychloroquine (Blackrock) which there are still supply issues with

[Chantev]

Hi Bonny

Was on it briefly after I read that it was given for seizures etc. Stopped it and never looked back. But it did stop my neuropathic pains. Good luck.

[Mthapa]

I am on Gabapin 300mg since the last 4 months for my IBS - symptom (pain, gurgling). I was told that pain on my tummy/rectum is nerve related. It did help me to a great extent , my only concern is massive hairfall . I am not too sure if it's the Gabapin or lupus itself that is causing the hairfall. Other than that it's really helped me with the IBS flares.

[BonnyB]

Many thanks everyone. So sorry I haven't been able to reply to all of you individually but in a flare and it's been a tough week so I really need this appointment at the hospital on Monday. Very interesting reading everyone's replies though. It has helped me with sleep and buring legs and feet at night. I suppose you start these things expecting a miracle, sadly some symptoms still there but suppose that's always going to be the case. Plus in our wonderful world the symptoms change so much, my family say it was such and such last week... yeah I know and believe me I'm having a hard time keeping up with all these symptoms too🤣

[stiff19]

as we are al different with different meds its personal. I was on them years ago and pregabalin but didnt like either and amitryptiline which was ok just to help ease and helped sleep but all left groovy feelings amitryptiline less so but functioning properly was more important to me than the nerve pains so I don't take any .but good luck with any trials to suit you 🙏

[Lucylou72]

Hi Bonny. My reply is a bit late. I take gabapentin for nerve pain as and when needed. It really helps and usually after a couple of days I can stop taking it. I just have it for when it's needed. I find if I continued I'd eat the house and all its contents as it makes me really hungry x