trying lyrica......starting low....general ramble
 

ages since i have been here but am still hanging on waiting for the day something stops the pain.
so hi to everyone from sunny australia
:D

here in australia Lyrica has now been put on the *free * list which means we can access it for the price of an ordinary script.
i have been on gapapentin for a few years now and am fortunate that my neuro has the power to write scripts on the hospital pharmacy and i dont pay the huge price for it that otherwise applies here

anyway.........i asked about lyrica so she has given me scripts. she, like most neuros i suppose, feels she has little to offer so is happy to comply with any of my not unreasonable requests and works in a multi disciplinary hospital clinic and helps out for me with my balance issues (the result of flu vaccine )
i finally today got up the nerve (!!!) to take a tiny dose after a meeting this morning when i knew i could relax at home.
i have a lot of drug sensitivities and interactions and got the PN from a flu vaccination nearly 7 years ago

i have opened a 75 mg cap and tipped out about 3/4 of it and am testing how i go and will slowly up the dose. it is pretty much what i do with any change of drugs. everyone dealing with me knows i do this!!

meanwhile i took my last dose of gabapentin last night . i am on 200/100/400 which i realise is nowhere near as high as others go.
i am pretty much over the sleepy feeling from the morning 200.
i have tolerated it reasonably well over 3 years , kept driving and kept up a good number of activities but am still very hindered by pain for walking and am tired and short tempered from pain effects at times.
i was told i did not need to taper. my pain is to my knees and into my hands and as we go into winter the cold is really affecting them. i wear gloves to counter that but wonder if others have that effect????

i started today on lyrica while i have a family member here to call for if i have a reaction.
my pain levels today are pretty horrendous and i am effectively now without much for pain as i cannot take morpine/codine or tramadol.
my fall back of Doloxene is off market and may not return here. i know it is totally off market most places but here there is some ambiguity and i live in hope of its return in a few months. meanwhile i have 10 days supply in a country where it is probably worth as much as gold ingots to others :winky:

i might be having a bad day or i might be already missing my 200/100 mg so far.
how long does the lyrica take to kick in at 75mg?
are we talking hours or days?
i cant afford the weight gain and simply have to keep the capacity to drive so i am not sure how i will go . since i only have half my balance remaining i cant afford to have side effects that will be balance /dizzy related .

i have read back to see how much positive is said re lyrica but dont see a lot.:(

any feedback would be welcome

thanks :grouphug:

I'm not sure if this is what you want to hear, and I'm also weary of writing this, as I'm sure there are people who feel it's working perfectly for them.

But.

1) On a personal level, I tried it 2 years ago. Lyrica was not on the list of accepted treatments for neuropathy over here, so the neurologist had to fill out forms to state that I had already unsuccessfully taken other anti-depressants (I was not suffering from depression) before I could get it.

Now for sure, a medicine that was that difficult to obtain, and so horribly expensive, raised the expectations. When I came out of the pharmacy, I could already feel the pain go away a bit!

Sadly, that was the only time it did something for me, and after a few months I stopped taking the pills.

2) My GP confirmed that most of her patients who were put on Lyrica weren't very positive about it, and she personally did not understand why it had become so popular.

3) I tend to believe Pfizer, the manufacturer, when they stated, last year, that Lyrica did not perform any better than placebo in their own trials.

To quote them verbatim: "Lyrica, when compared with a placebo, failed to meet the diabetes study's primary endpoint of a specified change in pain."

This means that it works about as well as sucking your thumb... Of course, this was only a trial with PN patients who were diabetic, but as the (pain) symptoms of PN often are very similar - no matter what caused it - I tend to read into this that it doesn't work for PN period.

This information is not new of course, and you may already have come across it, while reading this forum.

But, as they say, your mileage may vary, and I'm not an expert.

you definitely should have been titrated down on gabapentin as you titrate up on lyrica. gabapentin and lyrica are anti convulsants and should not just be suddenly stopped. that can cause seizures.

i asked about this ages ago of both my GP and the neuro i was first prescribed gabapentin from. both said i didnt have to titrate down as i was not epileptic and thus was not going to fit.
the current neuro, mentioned nothing about titrating up or down on either drug.........it was simply my idea to titrate up the Lyrica because of my many drug sensitivities /reactions

i will check with the clinic on tuesday

thanks for that.:)

i went and had an almight fall 30 hours ago (tripping on the dogs tennis ball) and was really lucky to not have broken both my hip and my neck...ending up smacking my head on a gum tree !!. spent 24 hours in accident emercency dept and decided, with the doc, that given my feet pain that i would go back to neurontin for the time being to get some relief.
leave lyrica til i have settled down and tried some other pain meds for all my joint pains.
hard to know sometimes if it is working or not as i have bad days and terrible days and yesterday was a terrible foot day.........that got better after my evening dose of gabapentin !!!!!!!!!!!!
coincidental or not i dont know but i usually find that when i am in that hospital my feet are more settled:confused:

wide O............i understand where you are coming from.
Lyrica was very costly here up til a few months ago, as was gabapentin off label.
i am just fortunate i get gabapentin cheaply from my neuros hospital via some deal they must have with the government or some subsidy .......dont know the details.
it did not apply to Lyrica tho.
now the government subsidises Lyrica for all of us and can be had cheaply via GP prescription

my GP and neuro have always been pretty pragmatic about it and said they had patients who it worked for/or not.
if nothing else works and if you can afford to buy it........try it.
i think that now it is so much cheaper there will be a move to try more people on it because it is cheaper and because there is always the hope it might work. as i have understood it it was designed for nerve pain so i suppose peoples hopes are raised.
in discussing it today with the emergency doc he said he felt it was worth a go if people are distressed.
again a very open ended kind of discussion with a doc i dont know, but who was very pragmatic about discussing pain management generally and some drugs specifically that were relevant to me /or not.

the Pfizer study is interesting in light of the study done here a few years ago now where diabetic neuropathy patients were given Vit D when found to be low .
there was excellent results for approx 50 % as i recall.
i was low on vit d when i heard of it and immediately packed in the vit d with no results on my pain but i gained a normal vit d again.
the study deliberately excluded those with PN of unknown cause and only used diabetics.
i asked my then poditarist to ask one of the docs, who he knew, a bit more about the study and if they would repeat anything with a different subject group.........but he disappeared and i never heard anything further.

it is also interesting in light of a pain killer i have taken called Doloxene which has been banned overseas for sometime. it is currently unavailable here and leaves me high and dry as i am allergic to all forms of morphine or morphine look alikes.
there were several reasons for taking it off market and one was the belief that it was not working as anything other than a placebo.
for me..........that is not the case .
interesting

so yes i guess i have always known that Lyrica was problematical.....same as many think gabapentin is.
or put it this way........the people who treat me are not pushing any drug but rather saying when u reach the point where u cant stand the pain .....then these are the drugs we will try for you......plus a few other drugs for other people who are not me. !!

i am sorry u did not succeed.:hug: i have no feelings either way about it and no real expectations . a poll elsewhere (not a medical related group) was pretty much more negative than positive when i asked at the time i had to decide on what to take .......so i went with the gabapentin. sort of scary how drugs are chosen !!!:(


but i think i will still be willing to try Lyrica again when my joints settle and bruises disappear.


[QUOTE=Wide-O;978688]I'm not sure if this is what you want to hear, and I'm also weary of writing this, as I'm sure there are people who feel it's working perfectly for them.

But.