A question for those who have or are taking NEURONTIN / GABAPENTIN or LYRICA

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1

Dear group,

For those of you who are currently taking Neurontin or Gabapentin, I am curious as to what the dosage rates are like, how many pills do you get in a packet and so on. I’m trying to work out how much I “might” need etc and what it might cost me.

I’m currently on Lyrica and am trying to work out if they’re similar at all - and see, well Lyrica / Pregabalin is very expensive compared to Neurontin / Gabapentin …

Lyrica - 56 pills @ 75mg = $124.00 (under patent)

Neurontin - ? pills @ 300mg = $6.00 (patent expired)

So if I can work out how many tablets I may need in a day, I do understand this is guess work currently, but my doctors are useless. I know I won’t really know till I have to take them myself. Just that I cannot afford to continue Lyrica at that price.

Best Wishes to you all for a pain free day!

Cheers ~ K

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I am currently taking 3600 mg of gabapentin. It was just raised. I have been told and read that is max dose but I talked to someone this weekend who takes 5000. I was initially on 200 mg before Oct. I don’t know how the dosage runs. 2 600 mg tabs 3 times a day. I guess it just depends on how it works. I was allergic to Lyrica.

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Kerry I just posted as Liz K (was lsmo) - decided to add my real name.

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Hi Liz,

I thought that was you! :slight_smile: Thanks for that info, can you tell me how many tablets/pills are in each box? I can’t seem to find that info out. Oh, it says on this pbs list I found that they come in blister packs of 100 tablets. Does that sound right?

My Doctor wrote a script for 300mg tablets… It does seem that Gabapentin requires one to take MUCH higher dose rates to achieve the best results!

Ok, so I would possible at maximum dose rate equivalent to what you’re taking Liz, it would maybe cost me up to $20.00 a month for Gabapentin. Or $124.00 per month for Lyrica … Depending on cost equivalent if my dose rates required increasing or not.

At the moment I am taking 1 tablet twice a day. That would change if I switched to Gabapentin then.

What allergic side affects did you get from Lyrica Liz, and how soon after you started taking it did the allergy show?

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Heya Ro,

Sorry, didn’t see your post there cause I took forever writing my reply to Liz! Thanks for the info, I’m definitely not in the US, but neither am I in the UK :slight_smile: I am in Australia, so even worse :slight_smile:

Thanks for the heads up on how your meds affect you and dosages etc., much appreciated! I wasn’t too confused :slight_smile: I did re-read through your post and it makes sense to me now. I can also understand how Gabapentin messes with the mind - but I"m also finding that any med I take for TN is messing with my mind.

I can’t explain this to family / friends - they don’t understand me :slight_smile: no pun intended. I believe they think I’m just lazy. I’ve got other things besides my TN going on too, and I don’t know if it’s the meds or not, but extremes of hot and cold really affect me. Today, it’s a hot one again - very very humid and I have not got the ability to achieve much at all in this kind of climate. Just sitting here typing and I’m sweating and feel really weak. I’m more active in the evenings, as it seems my brain loses more ability to function between 10 am and 5pm … Very weird …

I don’t know what to do. I don’t know if the Lyrica I’m on now is adversely affecting me or if it’s helping me, I can’t tell yet (I don’t know how any of us can ever know if the meds help now or if it’s just the way the TN is during the consumption of those meds). I don’t know if I should switch over to Gabapentin just because it’s cheaper or stay with the more expensive medication (Lyrica).

I am glad to hear that you are able to get back on your medications again now! I understand that you’ve been without them for quite a while now. I hope that they help you get things under control.

Cheers & Hugs to you Ro!

Kerry xx

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Heya Ro,

Ah, you were on again while I was typing this too! Ah, overlapping comments :slight_smile: happens all the time I guess.

I do understand how that is confusing for me, I was a technical troubleshooter for a paytv company doing customer troubleshooting phone calls in their call centre, helping the customer over the phone to fix their own equipment with instructions from me. I loved doing it, and was great job satisfaction.

Now - I’m unemployable. I used to have what was considerd advvanced comprehension, reading and writing skills - even right back to high school, took further classes to increase my abilities and this further developed my abilities to troubleshoot quickly and yet to assist each caller thoroughly. I also worked in a fast paced independant company after leaving the paytv company, my meds had affected my ability to process information and achieve effective working results ((in other words it had slowed me right down)). But this independant company I moved to closer to home, had been a self starter internet sales company for pet products - I was hired as an administrator. Three months in to this job, and one week prior to Christmas - they fired me. Said I wasn’t going to fit the “companies” requirements come the new year.

My next job was downgrading myself even further in what used to be my capabilities - I now got myself hired in a job as a housekeeper / cleaner with a company that worked for the defence dept, so I got to hang out with army guys, fly boys etc., and upkeep housekeeping for their rooms. It was only 25 hours a week, but it was also just down the road from me, and required little thinking. But then, a co-worker reported to the supervisors that I was taking an anti-epileptic medication and they “released me” from my job contract under the premise that I was a danger to myself an others working in such a responsible position. “officially” the job release papers said I was unable to satisfactorily able to complete my job requirements…

Oh geez, now I’m raving. I’m going to shut up now. I’ve gone totally off topic.

Thank for the following info though : you have 100 tabs in a box. what is the strength of each tab. that will tell you how long it will last by figuring out the strength/# of pills and the fact there are 100 in a box.

That is very helpful info. Many thanks!!

Cheers ~ Ko xx

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Thanks Ro,

In respect to which one helps me best - I just don’t know. The Doctor (Neuro) kept me on Tegretol for far too long a time, it lost effectiveness and then I’m thrown into a pool of which med to choose - so I guess, I have to leap in the deep end, figuratively, and “test” the water.

As Tegretol stopped working, they just added other things, that I don’t even know whether to continue taking them or not. So I’ve gone from Tegretol - to Tegretol + Xanax + Baclofen + Lyrica + Endep.

And 3 weeks into Lyrica I have to say my TN has more or less become a bother in the background which occasional break throughs that are gone shortly after they start. And coming from break throughs that would not go away, would not diminish in any respect without emergency help, that is an improvement. I’m reducing my tegretol dosage gradually - till it’s all gone, I’m now down to 400mg from once taking 1000mg a day.

The TN now when it gets me doesn’t ever get above a 5 / 10. As opposed to before when it would peak at a 10 / 10 and STAY like that, for hours and hours and hours. Repetitive attacks that had no reprieve. The 5 is way more manageable.

Hey Ro, all my explanations are long -winded and even I don’t know whether they make sense to me, in respect to the question or thought I was trying to answer, it’s just whatever my mind conjures as THE logical answer, but I get so easily side-tracked, distracted - call it what you will. I’m doing it right now.

Cheers ~ Ko xx

8

After being in agony all weekend the doctor has prescribed me Gabapentin, 3 x 300mg daily in addition the amytriptilene 10mg per pill up to 5 pills per day if needed. My right cheek and gums have swollen and it’s impossible to eat anything but runny food like yoghurt all weekend.
I feel pretty ‘zonked out’ today but the pain is almost gone except for if I bite on my back right teeth and my face is sore where the swelling is.
I go to see the doc again next week and he is going to refer me to a specialist (about time too!) and hopefully I will find a good drug or combination of drugs to keep it under control.
This TN attack couldn’t have come at a worse time as I started my new job last week, luckily my boss is lovely and understanding, but I feel like I’m letting her down because of this :frowning: I’m just glad we get meds free here in the UK but the service from the doctors can be slower and you gotta push for what you need. Good luck and love to all of you sufferers out there, I hope you find some relief :slight_smile:

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I’m calling my GP as soon as he opens up for “shop” today. As you know, my Neurologist has put me on Pregabalin and I had been noticing sore ‘legs & feet’ when I got up in the mornings lately. Well yesterday I realised anytime I got up from a sitting down position, my feet were sore. Last night I realised why - my feet were becoming partially swollen. Not my ankles or legs, just my feet. I think this is why my GP preferred Gabapentin, as he himself has peripheral neuropathies and had been put on Pregabalin and got edema of his feet and ankles. So he’d had to switch to Gabapentin and put on fluid medication to treat his edema.

Great, lets hope I’ve caught this in time.

Last night before I went to bed, around 3 am I was having TN attack warning signs “on both sides” alternately, and I couldn’t work out how to sleep and not aggravate one side of my face or the other.

It didn’t work… I’ve awoken this morning in pain like before, except this time the majority of its on the right hand side, all compressed around the lower jaw line… My right hand glands under the jaw do feel swollen - I shall have to get in to the Doc to check this out…

Hey M, thanks for the Oxcarbarmazepine idea. It can be added to my armoury of ideas :slight_smile: which of late had been getting too small! Much appreciated!

Ok, I’ve got some phone calls to make…

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Dear Gill,

I am very sorry to hear that you have been in so much pain. Sending all my empathy your way, I know how that feels, though would love to get the zonked out feeling right now :slight_smile: Also, try to remember NOT to bite down on any teeth - your instinct will be to test those spots that have previously been triggering attacks. I highly recommend against doing that! Bad Kerry humour, I know. I am very glad for you that you have an understanding employer like that! That’s something to be very thankful for!

Best Wishes for you to become pain free and at the least for you to enjoy a pain free day!

Cheers ~ Kerry

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I get 90 pills for a 30 day supply. I take 300 mg x 3 daily for a total of 900 mg/day

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I take Neurontin and have been happy with it for the most part. I take six pills a day, two at a time, three times daily. I am pretty sure they are 300 mg each. I hope that helps. I am starting to feel twinges on the other side of my face too and am hoping that it hasn’t gone bilateral on me. Guess we will see. What are they going to do double my prescriptions? LOL, bad joke! D

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dear Kerry, I’m not sure what your doc’s are telling you, but I wouldn’t be inclined to play with meds and figure out your own dosage. I take 3,600mg neurontin, 90 mg baclofen, 450 mg lamictal, 20mg namenda. A couple others, which I fail to remember. I have insurance, but my copays are $20, for a 3 month supply. I know that some are very expensive, but could not quote a price. My best to you! bob

14

Thank you to Misty, Danni & Bob!

Misty, yes that is the starting dose my Neuro put me on. Danni, what was your starting dose? Has your doc raised that dosage for you? Or do you have to titrate your levels yourself? Bob, I don’t wish to “play” with my meds as you say, I’m now taking the start off dose my Neuro prescribed of 3 x 300mg Gabapentin per day, have now been doing so for almost 4weeks and I’m still having bad attacks that put me back in the ER.

I live in a rural town in south east Queensland, Australia. All the GP’s I’ve had are quite liberal and all thoroughly instruct on dosage rates, when titration should be necessary and how to do it. None of them feel the need to govern my intake all that much, unless I need to upgrade to a higher “mg” size pill.

My new GP, as with my old GP who is away for a year now, just tell me to titrate slowly myself, but never more than 1 tablet either way and to allow at least 2 - 3 weeks between titrations to allow for meds to adjust.

I am desperately trying to find a Doctor I can afford (preferably a Neurologist) who will help me care for my TN and monitor me properly. This seems to be a very hard thing to find. Even some of the top names in Neurology in my state - don’t seem to think this necessary, it’s always yes - sorry you do have tn, take your tablets, thanks for coming by - then Goodbye, can’t help you further … It is idiotic! Where is the duty of care, and the oath all doctors swear to - to care for their patients. Here, it’s been well like yes, you’ve got an incurable illness and go away and don’t bother us again cause we can’t help.

I’m registering in a pain management program but they assess patients needs on a priority basis and I had to submit my own 10 page forms along with the Doctors separate submissions (these Doctors submissions were written up from my file at my old GP’s office, by a GP who’d never even met with me once, so goodness knows what he wrote… Regardless, I know wait to hear back from them as to when I may, if I do get an appointment, when that may be and if they’ll be able to take all this on for me, maybe rid me of pills I do not need and take on my “care” needs.

I am on disability though see and even seeing them will cost me AU$199 for a first consult. Hopefully, afterwards the price lowers for ongoing appointments, but even now I do not know if they too will be able to fulfill the ongoing care needs I have. They too, may turn me away as well, but I won’t know until after I’ve forked out the initial fees…

Well, I’m rambling and a little tired - that’s it from me right now. Hope some of this post made sense :slight_smile:

Cheers ~ Kerry

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I am currently on 4800 mg per day of neurontin, the maximum dose. It helps, but I would take more if I could.