[LolaLola]

Hello, A friend with Lupus has just been prescribed Gabapentin for quite severe pain related to her Lupus and Fibro.

She is on prednisolone and Plaquenil already., plus other meds not related to lupus.
We would love to hear how other people have fared with this.
x Lola

 

[lin]

i have taken this in the past for my epilepsy, it did nothing for me, now i have lots of pain, that was still there, i was on lots of this stuff a day
but i think we are all different so may help one and not another so good luck

Lin xxx

 

[Pink Pearl]

I've been taking gabapentin aka neurontin for 13+ years. I use it to control my migraines. For me, it has been the difference between life and existence. I use it as part of a combo of different meds which work well to control the migraines. I am down now to about 3 to 4 a year, from the high of 1 migraine which lasted 4 1/2 months. I was on a much higher dose when we started than I am now, but if I do start to get one, I can add in a dose or two if needed.

Neurontin works well at changing the way that the brain wires and transmits signals. So, it doesn't surprise me too much to hear that it is now being used for more than migraine control. If it works, then great. If not, then revisit the situation. Personally, I haven't noticed any difference in areas other than migraines, but I have been on it for a long time and it could be doing benefit there and I just haven't connected the dots. Since I don't skip doses, I don't have any comparison either of going off it for a day or two.

I hope it does the trick for your friend.
Sally

 

[lazylegs]

Hi Lola,

My daughter takes it for Fibro. It definitely reduced her pain however it did not eliminate it. The initial side effects were terrible for her but after 2 months they subsided and she started feeling some relief.

At one point she was having symptoms the doctor felt might have been cause by the drug so she was weaned off of it and put on a different medication. That is when she saw how much it had really been helping her. Fortunately she was able to go back on it.

Best wishes to your friend.

Take care,
Lazylegs

 

[LolaLola]

Thank You for the replies. I will pass them on. My friend Jo, is thinking of coming here herself so hopefully will introduce herself to you soon. I think she is at least willing to try this medication.
x Lola

 

[Lily]

Hi Lola Tell your friend that it has made a huge difference to me pain wise. I was put on it about a year ago for peripheral neuropathy, trigeminal neuralgia and just generalised headaches where vasculitis had done some damage to my brain. We slowly titrated the dosage upwards to watch for side effects and guage it's effectiveness. I'm only on 1200mg daily split in 3 doses but it has made a big difference. My pain is just a very dull in the background pain at times now and other times it's not even there. Before that I was in agony especially from the neuropathy.

So I guess I am a success story as far as this drug goes

love
Lily

 

[Pink Pearl]

Hi Lola
When I was first put on neurontin, I was having what were diagnosed as migraneous giganticus. The neurologist I was seeing then: Steward Tepper, MD, was still in Seattle. He has since moved to CT, their gain, our loss. He told me that research had shown that it was safe to take up to 13,000 mgs daily. I was taking 1,600 mgs 5 X a day. I now take 1,600 mgs twice a day, up it if I need to. Rarely do I need to add in another dose any more.

I often need to take higher than usual doses of meds due to scaring in my small intestine from celiac disease. The scar tissue doesn't absorb like a normal small intestine does so large amounts are needed to get a therapeutic amount absorbed.

Considering the **** my life was in with the extended migraines, any relief was welcome!

I also have peripheral neuropathy in both legs and mildly in my hands. I have very little feeling in my left leg and foot below the knee and about 1/2 damage in my right leg below the knee. I didn't make a connection with the neurontin for this, but must admit it may help there too. I don't skip any doses, so don't have comparison with or without.
Sally

 

[debatat]

Hi Lola

I was put on gabapentin for my nerve pain, when I was first diagnosed with ms. It really helped, I didnt realise how much until it was stopped due to side effects I was having. Turns out the side effects were not from the gabapentin but to disease(not being ms but lupus and sticky blood!) I often comtemplate trying it again.

Hope it works for your friend

Deb

 

[xinxiang37]

I am also on neurontin. It was perscribed to me for the relief of neuropathy pain. I had a work related accident in which i was beaten up by my student (autistic and severly MR) who didnt understand what he was doing. I have long term damage from the incident. I was waking up 4-6 times a night with numbness, tingling, and dead arm.

Since taking the neurontin i rarely wake up in this condition. I call it my miracle drug. I have missed doses and notice a hugh affect on how I feel in the morning. I feel like I didn't sleep all night and cant function normally until I take my next dose. I understand it helps with sleeping like a sleeping pill would. I almost sleep through the whole night.

I dont recall any side effects that I experienced while taking it. I have been on it for about 1 year.

 

[LolaLola]

Xinxiang, I am very sorry to hear of the assault on you. Even though this Student had no idea what he was doing , it must have been pretty shocking for you. I am glad the medication helped you.
x Lola

 

[LolaLola]

Thank you all, I have passed your experiences on. Just one more thing though, my friend is quite worried about any possible of psychiatric/psychological side effects. Is this something anyone has experienced?

Many Thanks again,
x Lola

 

[Lily]

Hi Lola,

I have no side effects at all. I know they use it also in bipolar and that concerned me a bit when I read about it thinking what would it do to someone without bipolar, but no problems here.

love
Lily