Anyone have any experience of gabapentin?
Uctd
Sjogrens, with lupus features
Current medication- hydroxychloquine.
The pain in my hands and feet, going up in my legs and hips has become unbearable.
It's a numb, tingling, stabbing, thrombin pain.
Gp wants to try me on gabapentin for nerve pain.
Thanks in advance x
gabapentin didn’t suit me,but Amitryptline helps with my back and lung pain.
I’m not medically qualified,but I would suggest that you may consider trying the Gabapentin.
I never read the list of side effects before I take different medication. It can put us off.
I’m retired so if I feel unwell I can go for a lie down/rest.
Good luck
I feel like it's hard getting going in the morning, have to wake at least 2 hours before work.
Then after work I'm shattered and in pain, go bed early.
Everything I have goes into work, nothing left for myself and my family.
I love my job, have no plans to give it up. Jyst need to find a balance.
Thank you x
forgot to say Amitryptline lessens the pain discomfort so that I can sleep better
I hated gabapentin - felt like I was on another planet. I take amitriptyline which also helps me sleep.
But we’re all different, so you just have to try these meds and see which one works for you.
Hi. BonnyB. I have a spine disorder that flares with lupus. Gabapentin has been wonderful for killing nerve pain. I’ve been taking it since 2019. It made me very tired until I just persevered until it didn’t. I’m taking high doses divided into 3 times a day. My life is much better now. Best to you
Pleased it's helped ypu and many thanks x
Hi Bonny
I’ve been on gabapentin for 4 years and it’s was a bit brutal to start with I felt like a zombie but I persevered and found it helped massively , I can sleep and the shooting pains in my hands , feet and hips have been reduced. I tried different drugs but couldn’t tolerate them and if you start on a low dose you can work out an appropriate dosage. I really didn’t want to take them at the start as heard lots of horror stories but I realised with the help of the consultant it was better on a cocktail of meds to try and help me live a better quality of life and still work part time than not. Good luck if you do start taking them x
I take Gabapentin in the evening and it really helps my pain and neuropathy. You should try it and see what suits you. With these autoimmune conditions it really depends on the individual and no one medication suits everyone. It’s a matter of trying what the rheumatologist suggests and go with it. Good luck
I took it but had to stop due to it causing headaches. I now take Amitryptiline (not sure that's spelt right...) to help with pain at night, Fluoxitine and hydroxychloquine. The combination has helped but still have a little pain, especially in my hands. X
Yes, gabapentin brilliant so far. No side effects. I started on amitryptiline but I had such bad dreams I swapped to gabapentin. I only take it in the evening at the moment but I sleep like a log for the first time in years. I used to toss and turn all night with aches and pains. The effects seem to last through some of the day and my peripheral neuropathy pain is better than it was. I will take one in the morning once I get used to it because at the moment it does make me very sleepy. Hopefully it will help you but if it doesn't there's at least another 3 types of pain meds you can try.
Dr said I'll be increasing my dose slowly. I'll keep you posted on how I get on. Thank you x
Yes do let me know. I started on one, now on two at night and can increase to 3 which I may do soon in the morning. I do have codeine on prescription for joint pain too but I don't need to take that much at all now. Hope it works for you.
I had one last night. Slept from 11pm til 6 am. That's not happened for years. I was desperate for the loo when I did wake though.
No side affects to report so far x
So happy for you. You'll need tena pants for a while 🤣I had not gone to toilet in the night for years but the first few nights on gabapentin and I slept right through too. It does wear off a bit and I do get up for a pee now but my night pain and tossing turning has not returned after several months. Enjoy sleeping again. 😴
Thank you x
In the days before Lupus, yes there were those days, which feels like another life, I was placed on Gabapentin for nerve pain which was due to a spinal injury which was because of the nerve being knocked out of place due to the disc at L4 and L5 so my nerve pain was never going to get any better until surgery, which I duly had. Gabapentine did nothing for my nerve pain because I had a physical problem. I was on a massive dose and spent 4 months somewhere that I could not tell you about because it was a blur. Luckily I didn't have to function because I couldn't stand up in the end and was totally bedridden and couldn't move unless it was commando style along the floor. Luckily or not I worked for myself and so did not receive anything moneywise for 10 months, although I couldn't remember if shops existed! Morphine was given after and together with Gabapentin which also sent me into Land of Blur. Once I'd had my operation, the first medication I was removed from was Morphine and they literally halved the dose of Gabapentin at the same time stating that I should immediately begin to reduce the dosage on a weekly basis under the direction of the GP which I did and I hasten to add, it took me 12 months to do this as the side affects made me feel utterly awful. Anyhoo, my story is also a history of there's nothing wrong with you; it's just a back ache, a herniated disc, blah, blah all of which was true. That was 4 years ago. I have since been diagnosed with Lupus which attacks my joints, and I also have nerve pain mostly in my right leg and it is awful, so I can understand how you must be feeling. Mine is also due to osteoarthritis in my right hip and knee according to the x-rays. My GP prescribed Amitryptalin at it's lowest dose and said it gave us another layer of dealing with the pain before Gabapentin, which he felt would be a last resort for me. So far, the Amitryptalin has helped with the night time pain; it helps me fall asleep and it keeps me asleep for maybe 4 hours. I don't know if this life story will help you; maybe it will be different for you, but reverting back to my stay in hospital for my back, which I had to pay £10k for privately because of the waiting list even though I fitted the criteria for emergency surgery (another story), the private pharmacist said that Gabapentin should only be used short term with frequent reviews. I do hope that you find something to help you; so far Amitryptalin seems to ease my sudden and random nerve pain, but I am by no means pain free. Some nights I still pace the floor until I'm utterly wasted and eventually fall asleep, but at least it is not every night like it was before Amitryptalin. Wishing you some respite from your pain. Namaste 🙏
What a nightmare for you. They've said it is a trial and not a forever drug as your body get used to it , so not as affective.
Hopefully I get on OK with it. X
I’ve been taking gabapentin for nerve pain for about eight years and would be lost without it, it makes the pain bearable. I was first given amitryptaline but that didn’t suit me at all, although I never had any side effects to the gabapentin, just a real lessening of the pain. I’m also taking Hydroxychloroquine so I’d say give it a go and see how it works for you, we all react differently to things and I really hope it works for you.
Hi Bonny, for me Gabapentin is the only drug that gives me any relief from the pain in my legs. It can upset your tummy initially and can make you drowsy initially until you get used to it. I was initially put on nine a day and could not function so my advice would be start at a lower dose. Good luck xx
Lansoprazole was in the package on collection from the pharmacy, so that must be for tummy troubles. Dr said 3 , 3 x a day at first and build up.
The pharmacist ( who is brilliant) said one at night 3 days. Then increase. Thank you x
I took Gp a year ago. I have SLE, also have 4 herniated disc's in my neck that were giving my unwanted pain. I was prescribed Gp and it was sixes in providing relief. Good luck
Hi. I'm on gabapentin for nerve pain and it works really well for me. Stops the pain and I personally have no side effects from it.
Can you drink alcohol on it. I won't have any when I first try it but I do like a wine, or g&t. Not daily or weekly even but don't like to think that option is removed completely x
I wouldn’t have a life it wasn’t for gabapentin. It’s always worth trying to see if they help you. They will start on a low dose and if it doesn’t work try taking it up before you give up. I have been on them 7 years and I have just had to take mine up quite a bit higher. Good luck.x
Hi BonnyB my lupus nurse started me on gabapentin 10 days ago one a day for first week then 2 a day second week and up to 3 third week. I’m currently at week two and haven’t noticed a change. I have 2 fractured vertebrae and the pain is up my spine into my head so obviously nerve damage too. I thought I should have seen some sort of change by now but I’m afraid I don’t . Maybe they will benefit you more. Good luck I hope you get some relief soon.
At what time of the day do you take them?
I've been in pain today as the one I had before bed has obviously worn off. After 3 days I've git to increase but again later in tge day as it might make me sleepy. The aim is to finally take one in the morning.
Gp did say go up to 3. 3 times a day .
Having said all this I do feel better for sleeping well though. X
After reading the replies BonnyB I think I’m going to have to double up this week to see if I can get some relief. I have been taking one in the morning and one at night but it doesn’t even dull the pain. So I’ll double up at bedtime tonight and see if I can get a good sleep😉good luck x
Hope it works for you flower x
Hi there - I often have pain that starts on the heels of my feet, at the back which then goes up the back of my ankles and into my calf muscles all the way into the backs of my knees. Sometimes I wake up with it, sometimes it comes on when I'm walking, sometimes when I'm watching telly. No rhyme or reason to it. Often in both legs but then settling in the right - this seems to be a feature with other joints too.
Anyway, I'm also on hydroxyc, but find that Etoricoxab really, really helpful for managing pain. Doesn't seem to have any side effects and doesn't affect my stomach.
It was prescribed by the rheumatologist but I get it from GP now too.
Hope that helps.
Hi, BonnyB I have exactly some of the same issues with lupus. I was put on Gabapentine a few years ago and it does somewhat help my numbness but be careful they do make you very sleepy 🥱. I’ve been on hydroxychloquine now for 6 months and fine that’s helping me more. I wish you all the best 👍
I will , thank you for the advice x
Hi Bobby, hope you are doing Ok when this msg is received. I have taken Gabapentin for over 4 yrs. They were prescribed for night hot flushes, very old solution apparently but I cannot take hmt due to having a stroke back in the 80's ( when my sle was diagnosed). I take 2x 50mg at night. Don't try & do anything, even walking, after you take them at this time as they are like very heavy sleeping pills, from my personal experience. I find up wake up with a hangover kind of feeling, which is not great. My pain is not relieved by them I find, but everyone's experience is different I guess. I find I get alot of stomach issues ( pain& bloating caused by constipation) . I can't even imagine taken them during the day, as they do make u feel so so drowsy. Good luck lovely.
I just saw your post and wanted to add what Gabapentin did for me.
I have GCA, lost sight of one eye, and had a part in the other. I had regular visits with my ophthalmologist and visual fields done frequently. My right eye didn't show any improvement despite all the prednisone and Actemra, TCZ, weekly. He referred me to a neuro-ophthalmologist who discovered I had optic neuritis. He initially put me on 1200 mg of gabapentin per day...you talk about sleepy. Over a year, my right eye improved little by little, and I only have a few blind spots in it. It was amazing to read over half the eye chart.
I now take the Big G three times a day, morning, noon, and night, and it doesn't make me sleepy any more. That was my only side effect, but I gained so much more. I also have neuropathy, myopathy, and PAD...I have no feeling in my lower legs and feet...but no pain. I'm guessing that might be due to the gabapentin too. It is working for me..good wishes to all. 💞l
Hi BonnyB
I'm 61, diagnosed with Lupus SLE 10years + and on a small dose of hydroxychocloriquine.
I was going down the Gym, housework, cooking etc until my latest bout of sciatica started November and as not cleared up by end of January this year, in desperation accepted to try Gabapentin which I had previously refused. It has been good for me.
Now, going about my normal activities without pain (excluding the gym which I haven't yet re - introduced) and have reduced my dosage from 12 tablets a day (3x4) to the current 3 (1 in the morning and 2 at night) with the plan to be off them completely by mid May.
I hope this helps and best of luck.
Thank you for letting me know how it's been for you. Pleased it's helped.
I had 2 last night, was very groggy this morning. Had to go into work later as I didn't feel OK to drive. Will take another 2 tonight and tomorrow night. Then try 1 tablet in the morning Saturday, increasing them slowly. X
Hi BonnyB
Good that you are introducing them slowly, and I'm sorry to hear about the grogginess.
Things look much better when you are not in pain and I hope this medication or any alternative that you may have to try do the trick for you.
Very best
Thank you x
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