@NiceCupOfTea

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NiceCupOfTea

When to start taking Gabapentin

I'm meant to be starting gabapentin soon and not sure if I should start right away. I was meant to be getting married this month but can't because of lockdown and have just had a new date through for 3 weeks (as soon as lockdown ends). I don't want possible side effects to ruin the day but I do want to alleviate the pain I'm in. I'd probably only have started them 2 weeks before the wedding...the other issue is that I could put off starting them til the wedding only for the wedding to be postponed again! Anyone taking gabapentin, what side effects did you have in the first couple of weeks and how long did it take before you stopped having the side effects?

DorisT

@DorisT

I’ve been on Gabapentin for about three years now. Can’t remember any major side effects to start with although husband and daughter say my fatigue seemed worse. It works very well for pain but one thing I would add is that you can’t stop taking it. The consequences could be quite severe. So when you go start remember you must stick with it, as it really works well.

Stumbler

@Stumbler

@NiceCupOfTea , it's your call when you start this new drug. I suppose it does depend on how bad the symptom is which led to this being prescribed. Maybe it's better the devil you know than the devil you don't!

ItsMewithMS

@ItsMewithMS

I took gaba a couple of times. Once was right after hip replacement and only took it for a few days and it just caused drowsiness and I fell asleep...I figured I would just take a tylonel PM if that was what it was going to do ;-0 Then when I had a numb thigh a couple of years later it was suggested again and I told them about my last experience and they said I had to take it longer and wait for that to subside. It did after a few days. Then I mentioned to a friend that is a Dr that takes it for her Lupus and she said she moved from that to Gralise as it is the extended release version and better for her. I moved to that as well and felt it was much better. Gaba basically releases over 4 hours and is done. Over that time for me it kind of peaked in the middle and then had less effect. The Gralise is more of an even release and I would take 3 of the dosage through the day (one around each meal time) and that was better. Not taking it now but told my Dr I had fatigue and could only do about a half an hour of activity at a time so he recommended Modofinal but insurance wouldn't approve and suggested Amantadine to try first. I don't think it helps with fatigue (which I should have described as stamina) but helps spasms through the afternoon and bed time so I am keeping it to help with that. They do take at least a week to stabilize I thought- made me drowsy before that so I took later in the day until I was used to them and then increased dosage

NiceCupOfTea

@NiceCupOfTea

Thanks for your reply @DorisT it is worrying to hear about severe consequences of stopping! I will discuss with my GP/MS nurse. Thanks @Stumbler the Gabapentin has the promise of helping alleviate symptoms of pain and stiffness. I also get migraines about twice a week and it seems to be used for that as well which would be a bonus. I've contacted but not heard back from physio and OT but was hoping they could suggest some exercises or anything for the stiffness and pain instead of going to gabapentin. Interesting to know Bout Gralise as well thanks @ItsMewithMS I am on Amantadine and it helps a little with fatigue. Without it I am utterly useless and with it I am...somewhat useful. Thanks for sharing your experience!

BULLMAN

@BULLMAN

Been on them 17 years. 1200 mg a day. No side effects.

NiceCupOfTea

@NiceCupOfTea

Hi @BULLMAN that's really good, I'm glad they've been good for you, I hope I am the same!

Nat1988

@Nat1988

I’m on gabapentin and they do help me I would struggle with the pains in my back without them and at 32 myself with young children I need to be on the go able to carry on

NiceCupOfTea

@NiceCupOfTea

Thanks @Nat1988 it's good to hear they help you do more normal things, I am hoping they do the same for me! My fiance and I want to start a family when it seems sensible following the pandemic and I'm a little worried about stopping them given what has been said, if I start now but I think I just have to cross that bridge when I come to it. I am in pain all the time, and even if they just help a bit it will be good.

SBGill91

@SBGill91

Hi, I’m on 3600mg a day and have been for around 6 months and thankfully no side effects, but to be honest, no change in pain/stiffness🤷‍♂️, if anything getting worse.... got next consultant meeting early Jan 20, and will be discussing with my MS Nurse at my next Tysabri infusion is a fortnight.

NiceCupOfTea

@NiceCupOfTea

Sorry to hear it hasn't helped @SBGill91 good luck for January, have the recommended anything else? Good luck with your nurse as well! Did your pain and stiffness come on as a relapse or did they just put it down to "yeah that's just the ms background"?

SBGill91

@SBGill91

Thanks.....I think relapse as it’s been as started on my right leg, and over the past 3 months the left leg he joined the fun.....

NiceCupOfTea

@NiceCupOfTea

@SBGill91 I hope there is some relief! Good luck with everything!