I have been on Pregabalin for 10 days and it worked well initially but today my GP has swapped me to Gabapentin initially 100 at night for a week. Does anyone have any advice as to what is the best time to take it - with evening meal or later? I’m worried about feeling weird before going to bed especially as I have to put eye drops in at night.
Gabapentin advice please: I have been... - Fibromyalgia Acti...
Gabapentin advice please
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BonnieMagic
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Thanks so much for responding. Fingers crossed it’ll work for me.
I take 300mg gabapentin 3 times a day currently. They make you a bit floaty bur nothing too bad xx
BonnieMagic• in reply to
Glad you’re doing ok. I’m just on 100mg at night for a week, then very gradually increasing. Good nights sleep but bit clumsy today 🤣
Hi I have only taken Pregabalin the other is an alternative. I take 75mg morning 75mg evening before bed .This was a gradual increased process .I gave no problems whatsoever and appears to be helping .
HiI would take at nightime ,I hope it helps
I take 1200 mg Gabapentin. It was built up slowly and I’ve never had any problems with it.
Hi can I ask why he swapped you to Gabapentin? .. as it has more side effects has a shorter half life than pregabalin... ? [Pregabalin is a newer drug and more expensive!]Hmmm...??
He said that Gabapentin had different side effects and felt it would suit me better. I have widespread OA which he said would not be helped by Gabapentin but thinks from examination I have fibromyalgia too. All I can do is trust his judgment and see how it goes.
My doctor has just told me that gabapentin has been shown to have no benefits for fibro myalgia so wants me to wean off it, same for tramadol. Nothing offered as replacement.
That’s awful, how distressing and completely unhelpful for you. Not sure he is right - have you checked with the official body? Last night I read a leaflet on Gabapentin published by the British Pain Society (catchy title 🤣) which was really helpful.
Hi Chardonnylady and BonnieMagic - an enormous review (12.000 patients) came out a month ago showing that amitriptyline compares favourably to pregabalin, duloxetine and milnacipran, with less side effects and more main effects, next came duloxetine, esp. with depression, since they say amitriptyline only helps 'real depression', not fibro-depression. So those are 4 meds you could ask for.
Seeing people asking about gabapentin I looked for a comparison and was very surprised to find that it's true: There is (almost) NO evidence that it helps fibromyalgia, as opposed to the other 4, only one study, not a good one either. The reasons given in several recent reviews it is prescribed so often is that it helps with other kinds of pain, that it has been hyped by the industry and that docs are now looking for alternatives to opioids.
While interested, I myself don't tolerate meds, incl. amitriptyline, so I'm on the supp and PT route, much more successfully.
How are you defining "real depression" vs "fibro-depression"? Similarly, how do you define "fibro pain" vs. "other kinds of pain"?
Thanks for asking me to clarify. I was trying to keep it simple, but you're right, that's misleading.
It's not me saying that, it's the review, so I will edit by adding "they say" (in the first case) and give you the 2 links and quotes. In short: They are distinguishing each of the two by the fact that they do actually help with depression / pain, but not if this is caused by fibro.
(If someone doesn't want the details they can stop reading this post here...)
They are saying that amitriptyline is shown to clearly help with a diagnosed major depressive disorder, but they find that it does help with a depression diagnosed co-morbid to amitriptyline (and I assume that they are clever enough to mean: across the various dosages, which of course is normally much higher in the first case). Although they say "depressive symptoms" for the depression that comes with fibro, they obviously don't mean that it is no depression, just that this will (add: most often) come as a result of the condition(s) and then not respond to amitriptyline.
And that gabapentin is found to help with a few certain other pain types, but not the pain that comes with fibro.
For amitriptyline: Farag et al. 2022.jamanetwork.com/journals/ja...
"In contrast to a 2018 study by Cipriani et al71 that found amitriptyline to be the antidepressant associated with the most efficacy among patients with major depressive disorder, this NMA found that amitriptyline was not associated with reducing fibromyalgia’s depressive symptoms. This difference may be explained by the pathophysiological causes of depression and fibromyalgia. In fibromyalgia, depression can be a direct result of pain, compounded by various comorbidities."
For gabapentin:
Goodman et al. 2019 pubmed.ncbi.nlm.nih.gov/309... "Clinicians who prescribe gabapentinoids off-label for pain should be aware of the limited evidence and should acknowledge to patients that potential benefits are uncertain for most off-label uses." and above that "Such use is growing, possibly because clinicians are searching increasingly for alternatives to opioids." (My "hyped" bit is implied, e.g. by a practitioner comment below.)
Anything we should disagree with?
I am not here to disagree with you, just to clarify some points you raised. The OP was taking gabapentin for pain. I don't think depression was the symptom that medication was given for. 1) That being said, the part you shared from the first paper didn't say anything about efficacy of amitriptyline on pain rather, they measured if their depression symptoms improved? Have you taken a depression screening questionnaire given by your doctor? Most patients in pain will report symptoms that mimic those with MDD due to pain, not due to a depressive episode. So the concluding explanation authors offered has clear flaws, they compared apples to oranges.
2) Gabapentin and associated meds are effective in a subset of patients, not all. That part is fact and the same statistics applies to all other drugs and in most diseases. I didn't see any data that says gabapentin is worse off performer for pain than others. Could you provide them? Thanks.
I wasn't answering the original post, I was answering Chardonnaylady saying "My doctor has just told me that gabapentin has been shown to have no benefits for fibro myalgia" and BonnieMagic replying "Not sure he is right - have you checked with the official body?"
1) The "part I shared" was in answer to you asking about depression. The main line of the study is (as I said in my very first line) to say that amitriptyline compares favourably to the 3 on-label meds on everything except depression. (I can go into more detail if you have more questions on how exactly.)
A depression screening questionnaire isn't applicable, I don't have one, I was just reporting the reviews.
Don't you think they are precisely arguing that MDD is "apples", whilst the mimicking of it in fibro is "oranges"?
2) You are just talking about "patients" and "pain". Everything you say in that context is of course right. But this review is saying that off-label use, definitely including fibromyalgia, has "limited evidence".
BTW I wasn't out to "prove" gabapentin "wrong" when I did a search for gabapentin, it was prompted by the review that came out last month and when I read some people elsewhere comparing pregabalin to gabapentin I tried a search out of curiosity and was very surprised that I could hardly find anything (the last one is pro gabapentin for fibro, but I can't see why:
A review by Cooper et al. 2017 Gabapentin for fibromyalgia pain in adults pubmed.ncbi.nlm.nih.gov/280...
which starts “Gabapentin is an antiepileptic drug widely licensed for treatment of neuropathic pain. It is not licensed for the treatment of fibromyalgia, but is commonly used because fibromyalgia can respond to the same medicines as neuropathic pain.” but concludes “We have only very low quality evidence and are very uncertain about estimates of benefit and harm because of a small amount of data from a single trial. There is insufficient evidence to support or refute the suggestion that gabapentin reduces pain in fibromyalgia.” (FM is not just pain, but if gabapentin is mainly for pain, then that’s a “striking” conclusion.)
A review by Peckham et al., 2018 echoes the results of Cooper et al. above pubmfed.ncbi.nlm.nih.gov/30..., saying “Increasing evidence has emerged suggesting that gabapentin may not be as benign as once thought and may be associated with substance abuse in concert with opioids.” “Reviews on off-label indications such as migraine, fibromyalgia, mental illness, and substance dependence have found modest to no effect on relevant clinical outcomes. This high-quality evidence has often been overshadowed by uncontrolled studies and limited case reports.”
Again in a a review by Moore et al 2014 Gabapentin for chronic neuropathic pain and fibromyalgia in adults pubmed.ncbi.nlm.nih.gov/247...
“Over half of those treated with gabapentin will not have worthwhile pain relief. Results might vary between different neuropathic pain conditions, and the amount of evidence for gabapentin in neuropathic pain conditions except postherpetic neuralgia and painful diabetic neuropathy, and in fibromyalgia, is very limited.”
I had to read this sentence carefully: The comma before "and in fibromyalgia" shows that you can put parentheses around (except postherpetic neuralgia and painful diabetic neuropathy).
Similarly an early review by Tzellos et al. 2010 comparing pregabalin with gabapentin only found one good study about gabapentin, so couldn’t really compare (altho it had been available since 2004). onlinelibrary.wiley.com/doi...
Admittedly I don't understand how this one fits in with the above, and the full article is behind a paywall, so I can't see what they are basing it on and it completely contradicts everything else on pubmed I can find on gabapentin and fibro, which isn't much:
Calandre et al, 2016 (full article behind paywall) pubmed.ncbi.nlm.nih.gov/273...
"Expert commentary: GBP and PGB are effective for the treatment neuropathic pain, fibromyalgia and epilepsy; in addition, they may be useful for the reduction of postoperative pain. PGB is also effective for the treatment of generalized anxiety disorder and GBP for the treatment of restless legs syndrome."
(I don't know what exactly is meant by "expert commentary" in the middle of an abstract?)
(I'd made these notes anyway, and more.)
Also, you said there is fibro pain and there is other kinds of pain. I think that is a dangerous statement to make up. Most pain is a signal. The one thing that charaterizes fibromyalgia is the presence of "wide spread pain" but remember, a deconditioned person who was made to work out four hours straight will end up with "wide spread pain". If we want to justify why drug works or not, we should be careful to not make up new definitions on conditions or traits because clearly, when drugs are being tested in clinical trials they didn't use "your definition" to prove efficacy.
Most importantly, off label use of medication is a blessing. We don't exactly know all the mechanisms of drugs that improve subjective symptoms such as pain, anxiety, or depression. Off label use is permitted only under strict safety conditions and presence of sufficient efficacy. If one drug reduces your flu-induced fever safely would you object using it to decrease COVID fever because the viruses are different? Same rationale.
I'm sure you mean "they said there is" as you said you're here to clarify points and not to argue with me.
I don't yet understand why you think the distinction they make is dangerous. Your example with temporary as opposed to chronic widespread pain doesn't fit to their results which are comparing chronic widespread pain in a few other conditions, where gabapentin might help, to chronic widespread pain in fibromyalgia, for which they say there is almost no evidence that it might help.
I thoroughly agree that off-label use is a blessing, and so of course do the above articles: It's exactly what the first study is saying - that amitriptyline altho it's off-label actually comes off better than the 3 on-label ones. It's just that the same cannot be said for all off-label ones, and it seems gabapentin for fibro is one. Of course it can be tried, but ones with little evidence should be tried before the ones with more evidence, you'll agree. Seeing these studies, I'm happy that my pain docs tried amitriptyline on me first, harming me less than all pain killers.
"but ones with little evidence should be tried before the ones with more evidence" I know that is simply not true in the clinical setting. The fact is that the main reason those off label use drugs have "less formal evidence" is that pharma are unwilling to spend funding to carry a new, full size clinical trial which is expensive. Why? because the drugs are already approved for use (for other indication) and new "data" likely won't lead to substantial financial benefit for the manufacturer. Cost outweighs benefits. And why should pain sufferers wait when they are getting relief readily?
"Seeing these studies, I'm happy that my pain docs tried amitriptyline on me first, harming me less than all pain killers." I am also happy that you responded so well to the first medication your doctor prescribed. However, it is certainly not true that other medications could "harm you more". It can be very dangerous to go read a number of articles and carry the study results as "the fact" or preconceived notion in interpretating drug response or ANTICIPATED response to said medications. The study results are almost always mixed, because we as humans are heterogenous and dynamic, leading to differences in population used for the studies, condition AND context in which they were treated, duration of observation post treatment, and diagnostic criteria use which means presence of selection bias). Also, newer drugs will almost always have fewer studies to support a benefit given the function of time. The only true and proven valid study design to assess two drugs is a comparative study design, which patients are randomly assigned to one or the other without knowing which drug they are given. Similarly, the pain rating needs to be done by an independent rater blinded to what drug they were assessing results on. So yes, biomedical science is complex and beautifully challenging to be done well. And very, very expensive.
You certainly do not need to be taking anything you don't feel comfortable with, my concern is your labeling and judging medications as "facts" based on a few papers and lack of clinician training or experience may lead to diminished success of other patients by increasing mistrust between patients and doctors, and scaring patients into not being compliant with treatment advice (words have consequences). After all, even the real experts in the field understand the limitations in interpretating study findings and published their views as "opinions" (not facts), perhaps as end users we should apply same level of caution in labeling medications that we do not have sufficient knowledge on.
Your first point is a simple wrong-way-round-mistake of mine, so I agree. 2. seems a misunderstanding on your part - apart from that I agree. 3.+4. I agree with, but can't see which point of mine you're applying it to. And the last about dangers of non-compliance I think I disagree with, esp. in the case of fibro, so would like to hear some examples that may convince me. Finally, I'd like to know whether you now agree everything you have no longer mentioned.
1. "Of course it can be tried, but ones with little evidence should be tried before the ones with more evidence, you'll agree." Whoopsy, "my fog": Other way round, I've now edited it in my post above! Do you still beg to differ?
2. I said: "Seeing these studies, I'm happy that my pain docs tried amitriptyline on me first, harming me less than all pain killers."
You've misunderstood me about this point: 4 pain killers and other meds caused severe rashes all over my bodies, gut problems or my focal seizures, whilst amitriptyline summed up to 8 side effects, incl. seizures, in the course of 4 months. That made me give up on all meds, which my docs support. I know about nocebo effects and selection bias etc. if that's what you mean, and act accordingly, I agree with all you are saying, except that it doesn't apply to me. Neither my docs or I see any nocebo effects in my reactions to meds and no placebo in my reactions to supps. And what I was actually referring to the study saying amitriptyline fares pretty well, so I'm glad in hindsight I got amitriptyline first and not the FDA-approved three or gabapentin. But I'm definitely not saying amitriptyline helped or was good, rather its zombification prevented clear-headed symptom analysis and trigger hunting. Like tilidine, I was given it although they knew I had focal seizures. (And like electrotherapy in the fibro clinic, which I told them why I didn't think that's a good idea.)
3. Not sure which of my points your point about "newer drugs will almost always have fewer studies" is referring to. Gabapentin is the oldest, but as shown there's almost no studies on it for fibro. You could now say that doesn't mean it doesn't work, but that can apply to lots, so I doubt you are saying that?
4. I agree with you saying "The only true and proven valid study design to assess two drugs is a comparative study design....". If and when they exist, I use their results. If they don't, I use second best. Isn't that's what they're for?
5. I get that you want to protect patients from not complying with their docs, but I think I disagree to a certain extent. I'm also extremely aware of the limitations of studies, and like showing where they've gone wrong, like the ones claiming that 45% of fibromites have ADHD, you'll remember. But as I've often said, my >50 docs in the last 2.5y since fibro were almost only useful to check that it's not anything else. The ones who tried most to help, harmed me most & severely. My docs & I trust myself most, as I know more about fibro, meds and definitely supps than any of them, and most of them put together, so they let me educate them. This experience is supported by the studies showing how high the percentage of misdiagnoses and wrong treatment decisions etc. doctors make. So I find it much more important to educate ourselves, learn to self-care, understand our own bodies, self-advocate, especially as fibromites. And more to the point: Here I am recommending that if a doc gives gabapentin as first choice without explanation, then I'd advise to ask for why not the other 4, esp. why not amitriptyline. Can you give me an example of any dangers of fibromites not complying with their docs by stopping meds that are harming them or asking to change them, as they have heard that others may be better? Are you telling me to not advise people to look for alternatives to meds, and just do what docs tell them, without discussion, then they'll be fine, i.e. docs usually don't make mistakes? (I realize you're not presuming I'm saying 'stop gabapentin', which I am not. But it seems to me you are implying that I shouldn't say anything bad about any med, cos that might make someone make a decision that is bad for them. And we're not talking about CVD this time, we're talking only about fibro.)
And: I guess that you are not engaging with my many other points (neither agreeing or disagreeing) because we've clarified them and agree? In debates like these I'm used to people saying where they agree, like I'm doing, to make sure of a common ground. Otherwise it feels like senselessly running around in circles without getting anywhere, which I would want to stop.
Not sure where to start but actually I love and do work, to keep it up I need my sleep and self care like eating out and enjoying the nature. Due to limited hours of the day, I didn't intend to and unfortunately can't afford to "debate" with online strangers who just may be on a different wave length. I will therefore fully agree with your last sentence "it feels like senselessly running around in circles without getting anywhere, which I would want to stop." and propose that we call it an interesting encounter. Will look forward to your other opinion pieces here. Cheers!
Well I must say I for one am heartily pleased to read that you are drawing a line under this debate. I found it incredibly unhelpful and lost heart in trying to understand what was a ridiculously lengthy debate. I asked a question in my original post and I feel it was hi-jacked. Am pretty disappointed.
So sorry! A doc someone mentioned had questioned that gabapentin is right for fibro. I'd wanted to show the reason why. Lisa wanted more and more research details. I thought it wouldn't hurt anyone to expand as the thread had "ended" 2 weeks ago. But of course you get all our long stuff, how annoying for you! Next time I'll just post the links and not all the quotes or arguments, anything else via PM, so it won't happen again!
Bottom line I'd say is: Several reviews say gabapentin may not help with fibro as well as pregabalin, duloxetine and amitriptyline. Lisa I think disputes that research and says: Trust your doc.
Sorry!
Hi Bonnie,I take Gabapentin at night before I go to sleep. It also helps me sleep.
I take 600mg twice a day I take 1 mid morning & the other one early evening no later that 9 pm if that’s any help
Often with Gabapentin and Pregablin your system can take a couple of weeks to get used to it. I know with Pregablin I initially felt as though I was from planet Zog but now apart from some help with the pain I don't have any side effects. I am on what a lot of people would consider a low dose but that is my choice as I am on a lot of other meds and am very sensitive to many. From what friends who are on gabapentin have said they seem to have less side effects on that than when they took Pregablin. Hope it works for you.
I’m definitely on planet zog today! I’m hoping to stay on a low dose too as, like you, I’m very intolerant of many meds.
Hi Bonnie, I'm now on 150mg morning and night for pregabalin, I'm more mobile during the day (although it takes an hour or so in the morning for the painkillers to help). I have restless legs, painful too overnight, at first the pregagbalin helped but the edge has gone and the restlessness and pain is sneaking back in. Will be online again booking an appointment for a telephone consultation.
Good to hear from you though I’m sorry the pain is sneaking back in again. It’s all such trial and error isn’t it? I obviously took my nightly dose too late last night as was awake for two hours then really groggy this morning. Takes my painkillers a while to work too but after my morning walk I feel much better. Hope your doctor sorts you soon and I love your forum name!
No need to be sorry, we all go through similar symptoms and deal with our pain in our own way. I'm happy anyway , it's not too bad during the day. It'd hardly surprising when I take codeine, paracetamol, pregabalin and CBD and wild lettuce tinctures. It's hard to tell sometimes which is brain fog or too much of one or both of the tinctures. At least I can walk the dog a couple of miles or do the DIY jobs about the bungalow. x
Lord god almighty I thought funny too, coming up with a user name that wasn't already taken is enough to make anyone profane lol.
Hi, this drug only worked for a short while and it hardly helped the pain but gave me side effects. I tried for over like six months, then gave up.
So if you find it doesn't work for you either, look at more natural methods of treatments.
I take turmeric tablets, these were fantastic once I had been on two tablets a day for like a week or two, I progress to two a say gently, as its been known to upset some people.
It helps my pain so much better than the pharmaceutical meds I was offered.
My doctor told me that it works for me because I must have inflammation in my body.
I now take a cocktail of vitamins and supplements to manage my pains etc.
So don't worry if this medication doesn't work for you, there are plenty of other options you can try.
LisaSnowFMA UK Volunteer
Where?
You mean where did you use the wrong word? Now you've corrected to: "If we want to justify why drug works or not, we should be careful to not make up new definitions on conditions or traits", but before it read like this. Again I'll be deleting all this of course!
Typo!
That's really wild. I remember correcting "defination" to "definition", but not the "Jew" word, at all! Scary!
But I spose the autocorrect-typo is scarier. Certain words should make your gadget blink, flash and sound a whistle. ;-DNot what you're looking for?
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