Gabapentin stopped working

[Maud-ie]

Gabapentin? I have taken this for about two years' 3 x 300mg a day and it had alleviated the horrible pain somewhat. I have gained about a stone in weight and I am bloated all of the time. Also I find it difficult to urinate. However, the drug now seems to have lost a lot of it's efficacy and I am in intense pain a lot more of the time and having to supplement with co-codamol. (That doesn't really do much either). I cannot take NSAID's as I have a heart condition. Does Gabapentin stop working after a while? Should and how should I stop taking it?

[Hidden]

Speak to gp and tell them there not workking any more dont just stop though xxxxx cold turkey will cause horrible side effectsx

[Hazel_Angelstar Administrator FMA UK Staff]

Medication can stop working after a while because our body gets used to it and looks for more too get the same effect

Best to discuss with your gp, as if it's been helping then a higher dose might be needed ... Or even a change to a different med. Pregabalin is in same group of meds, but some people so better on pregabalin than gabapentin

[Maud-ie in reply to Hazel_Angelstar]

Thank you. Will TRY to get some kind of talk with GP. Fill in that long-winded, irrelevant form just to get a phone call from one. My surgery appears shut during Covid.

[Inthesticks]

Hello Maud-ie. I was on Gabapentin for 2 years. I was put on a low dosage of 300mg 3 times daily to start, rising to the maximum of 900mg 3 times daily over a 4 month period (2,700 mg per day). When I first started on it the first thing to happen was relief of my depression and I also got some of my energy back. My pain was only a little easier. After 2 years my GP changed me to Pregabalin which was supposed to be more effective. I didn't think so but my GP urged me to continue as it can take a while to build up it's efficacy. Another 2 years went by and I was in despair and felt I'd never get relief from Fibro. My GP did some more research and found that a drug called Duloxetine had just come off licence and thus was available for prescription. This drug is a form of anti-depressant like the familiar SSRIs, but it worked on a different level and is called an SNRI which is a Norepinephrine re-uptake inhibitor instead of Serotonin. This has been a miracle drug for me, greatly reducing my symptoms and making life liveable again. I've been on it for over 2 years now and it's still very effective. It may help you, please have a chat with your GP.

It's hard to advise you on reducing Gabapentin as you are on a minimum/starting dose already. It is the dosage I was told to stop taking them by my GP but I went straight over to Pregabalin. In your case if you are not going over to pregabalin immediately, I would recommend reducing to 2 tablets daily for up to a week, then down to 1 tablet daily for another week and then stop altogether.

I am lucky in that I have a GP who is prepared to spend time to research and help me. He reviews me every 2 months and has done so for the past 6 or 7 years. Here in the Scottish Borders, Rheumatologists refuse to see Fibro patients and the responsibility is laid firmly at the GP's door. It is vital to build a good relationship with your GP so they can better understand your symptoms and how best to treat them.

Weight gain on Gabapentin is common, I too put on a stone. Bloating could be due to Fibro rather than the drug.

I also have difficulty urinating like you. As I've been on so many different treatments I suspect Fibro is the cause.

I hope all this is of help to you. Don't ever give up on yourself, something will work for you, it's a matter of trial and error I'm sorry to say. Be positive, and don't let negativity creep in. Above all be kind to yourself.

[Maud-ie in reply to Inthesticks]

Thank you so much for all this invaluable advice. My GP changes every week and they have zero concern once you are diagnosed. Never had a review of Gabapentin since day one two year's ago. Here in London GP surgeries are closed most of the time now anyway.

[Inthesticks in reply to Maud-ie]

I'm glad you found my reply helpful. Currently I'm in a similar situation as you, due to Covid our surgery is closed too. But we now have a system where we can ring in to try and get my doctor to call me back at his convenience later in the morning. It's a rotten and uncaring practice that doesn't make any effort to help it's patients during this pandemic. I do so hope you can get help one way or another. You could try A&E and explain your situation, they may be able to help, just a thought. Feel free to contact me again if there is something more I can help you with.

[Hopinggh in reply to Inthesticks]

Hello ! Inthe sticks,

Your response is very inspiring !

I am in the U.S. I have Fibro and Neuropathy like pain at all times for many years. The neuropathy feels as if its spread almost everywhere now. Feels like a bad sunburn, burning with tingling and jolts sometimes.

I have not taken drugs after reading about all the negative side effects. Seems like when its good its good and when its bad , its terrible.

My dr. Suggested Cymbalta. Im on the fence.

How long did it take to feel better and did you have any side effects at all? How many mgs did you start at and how much are you taking now.?

Thank you for helping as this info can be life changing and so appreciated.

Hopinggh

[Inthesticks in reply to Hopinggh]

Hello Hopingg

Thank you for your kind words, I know so much as I am an old hand at living with Fibro and also ME before Fibro intervened. The right drug or combination of drugs can take years of trial and error, as there are so many options, and I think I've had pretty much all of them at one time or another.

I have noted that you have neuropathic pain, all the burning, sting and tingling, like you I suffered that for years so I know you are suffering hell.

I have checked and the drug your doctor has suggested, over here in the UK it is called Duloxetine. I cannot praise this drug enough, it has been a real breakthrough for me. Within 2 weeks (or less) the truly miserable Neuropathy and burning had miraculously disappeared. I still have some symptoms but they are mild now and don't really bother me. The muscle pain has all but disappeared, I really have to poke and press hard to feel there is some residual pain, so the Fibro is still there but not causing me any problems, thanks to Duloxetine. Your doctor is well clued up to suggest this drug.

I started on 60mg twice daily. This is the maximum dose and is recommended for Fibro by NICE our equivalent of your FDA. The max dosage for all other complaints requiring Duloxetine is 60mg once per day. It is vital that your doctor prescribes it for 2x daily. My GP copied all the relevant material for me to read, so I understood exactly why This high dose is recommended for Fibro. Luckily I have quite a bit of medical knowledge, having taken the nursing Anatomy, Physiology and Pharmacology courses for my work as a medical information specialist. I have a wonderful GP who prints off any Fibro information he gets for me to peruse. I hope this helps you to understand where I'm coming from and why I am confident in my advice.

And my advice is go for it, grab it with both hands. I can't promise it will work for you, we're all different, but for me it has been life changing. The only side effects I've experienced is drowsiness but only occasionally and slight weight gain. I hope this helps you to decide and wish you well for the future.

[Hopinggh in reply to Inthesticks]

Hello! Inthesticks,

Thank you so much for your great kindness and generous help ! You have warmed my heart tremendously and given me renewed hope.

I am so happy for you that you finally found good relief and you are a true inspiration!

My dr feels I have Fibro because of the widespread pain, which I thought was neuropathy. I do not have the pain upon touch, or pressure that , I understand, Fibros have. I have the classic Fibro neck and shoulder pain at times.

In consideration of the possibility that it is full body neuropathy only, do you feel 60mgs , 2x a day is still the good starter dose? My dr suggested 30mgs of Cymbalta for one week and 60 mgs once a day thereafter .

He seems like a stubborn dr. I only met with him twice, once on the phone. I hope I can convince him to reconsider dosing schedule.

If it happens that he might increase my dose to 60 mgs x 2 in the future, do you think the lag in time to full dose will render my treatment less effective, with, perhaps, side effects? It seems going full-force right away was a great way for you and the studied way that works, which you advised was advised to you by your dr. and your extensive edu. On the subject.

I have just started Levothyroxine three weeks ago and had to lower the starting dose from 75 mcg. In half to 37.5 mcg. Due to insomnia. Its a bit better, but Im taking a sleeping pill to help out .

I would like to get my thyroid hormones up a bit, since they are very low, before I start a new drug.

I see Cymbalta/duloxetine in my near future !

Thank you so much for your wonderful help!

You have been a blessing to me, and to others!

Have a wonderful day!

With warmest regards,

Hopinggh

[Inthesticks in reply to Hopinggh]

Hello again Hopinggh,

I am so glad that I've given you renewed hope, we Fibros need all the help we can get. I was thinking about your case last night and remembered that you also mentioned jolts. Are they like mini electric shocks or like little electric snakes wiggling in your muscles ? Especially at night in bed. If so, that is yet another symptom and not normal neuropathy. It is due to a chemical imbalance in your brain, caused of course by Fibro. I have a different medication for this which has stopped it completely. I take Clonazepam 3 mg at night. I was started on 500mcg for 1 month, then 1mg for another month, 2mg the next month and then finally raised to 3mg . Once I got on to 3mg nightly it worked like a dream come true. In the USA two of the brand names are Klonopin, Rivotril which I Googled for you. There are apparently others which weren't mentioned, but I'm sure your Doctor will know which version (if any) would be better. It will help your sleep too. It takes between half an hour and an hour to kick in, I take mine half an hour before bed and I sleep soundly unlike before taking them when I was lucky to get 2 hours because the 'jolts' kept waking me just as I was dropping off. I don't know whether your doctor will agree it is worth trying but you're welcome to tell him my story.

Now to your question. I doubt it would make any difference if you had to take only 60mg a day for 1 week and then go to 60 mg twice a day. My doctor followed the NICE (your FDA) guidelines which recommend 60mg twice daily from the outset. FDA guidelines may be different.

Once you start on Duloxetine I pray you get the relief I've had. For me it's a miracle drug, may it be so for you.

Wishing you wellness for the future

Kind regards

Inthesticks

[Hopinggh in reply to Inthesticks]

Hello! Inthesticks,

So nice and happy to see you on top of my emails as I turned on the computer!

I will investigate that new med, Clonazepam, and its USA brands. Yes, I have both the wiggles and jolts, not often jolts. The sizzling burning is constant.

In reading Duloxetine reviews yesterday on other sites, many people have used it ten years, which is very promising. If it can give me relief well into my 70s, I can look forward to better aging years and i hope the same for you and everyone !

I will discuss all the above with my dr.

One more question just came to mind, did you start Clonazepam well after you started Duloxetine, same time, or soon after ?

Your help, as always, is so appreciated!

Wishing you a wonderful day !

Hopinggh

[Inthesticks in reply to Hopinggh]

Hello Hopinggh,

So glad you were pleased to see me in your inbox and found my information of interest. It sounds like you have a good relationship with your doctor, so many Fibro patients are passed off with ''it's all in your mind'' and left to suffer going from pillar to post trying to find a helpful doctor. Or, even worse they believe the doctor which can lead to severe depression and in some sad cases, suicide. I could weep for those sufferers when there are many different treatments out there which can help. There isn't a cure, yet, but with a good caring doctor onside a lot of relief can be obtained. It's a lengthy process to find what helps and many doctors sadly aren't prepared to invest their time on something for which there is no cure.

Neuropathy was one of my later symptoms to appear, the electric wiggles and jolts were the last symptom to turn up. I started the Duloxetine which worked wonders about 3 years ago if my memory serves me well. It rid me of the neuropathy and awful heat, apart from the wiggles which at the time didn't happen too often and were quite mild. But they built up to be more intense and more frequent, until it was every night. At this point I felt it was time I spoke with my doctor and he felt they were not part of the Neuropathy at all, something else was going on in my brain. He referred to several publications to find the best drug to help and came up with Clonazepam. I think that it was about 18 months after starting Duloxetine that I started the Clonazepam. The time gap had nothing to do with any possible drug interaction worries, it was purely because of the way my symptoms developed over time.

Thank you for all your kind words, they have helped my confidence to open up and help where I can.

Kind regards and best wishes for your health in the future,

Inthesticks

[Hopinggh in reply to Inthesticks]

Hi ! Inthesticks,

Thank you for your rapid , and heartfelt, response.

Looks like you have had quite a long battle and it inspires me to go on too. The pain is more intense. Morning pain now used to be the height of the evening pain years ago.

For now, my next trial will be Duloxetine. The wiggles and jolts are infrequent, but i will know where to turn when it might get too bothersome.

I do not wake up from jolts, yet .

Thank you for all the very good, firsthand, info.

Good luck and best wishes for good health to you in the future too.

I am greatful for you, and others on here, who are able to confidantly give their experiences and help !

Anyone who writes on this site, writes from their truths and their heart. So wonderful to feel so accepted and when we are so in need to fill that emotional void which happens when we are ill and not as readily understood by others in the outside world.

Bless you !

Warm regards,

Hopinggh

[Ritatali in reply to Inthesticks]

I would strongly urge you not to take Duloxetine. I was on it for nerve pain and depression for 6 months. It did help with pain, but I developed a constant gerd cough, with vomiting, and I have become completely incontinent, and have permanent diarrhea. I have been off it a month, and coming off it is extremely hard. Look up cymbalta withdrawal forums, mainly American, but they've had it out longer there. Many call it the most evil drug there is, taking people years to get off it once started.

[MALC19]

I was put on gabapentin by hospital but gp took me off of them. My next appt at hospital i was put on pregabalin. Cannot take any anti inflammatories or ibuprofen due to colitis, so at my next hospital appt they asked if pregabalin helped. I have to be honest and say they didnt help much either. I have been on amitriptyline since being diagnosed with ME which does help with fibro too. I had a fall last year and was diagnosed with sacroiliitis after having MRIs and was waiting on rheumatology since Dec last year but again i think they cannot be bothered due to me having fibro and ME. After the last 30 years i just get used to telling whether consultants etc are interested or not and if they are not i just dont bother saying it anymore.

I know everybody should be treated with respect when going to appts so i have written my medical history and medical conditions down as well as my original diagnosis for ME that forces the medical profession to read it all at every new consultantcy.

Much easier than trying to explain it all and what the pain is like.

Just a simple tip to get doctors to understand and empathise.

[Inthesticks in reply to MALC19]

Like you I didn't have much luck with Gabapentin or Pregabalin. Luckily I have a GP who is prepared to research Fibro in order to help me so I've been through a lot of trial and error to find a drug that works for me. Duloxetine has been my saviour, it only became available 2years ago and I've been on it ever since. Here in Scotland one cannot see a Rheumatologist for Fibro and all responsibility has been placed on GP's shoulders. Before the pandemic it was easier to see a GP than a hospital specialist, so this approach works well, just not so good during the pandemic. In fact Covid could be the reason why you haven't had an appointment for you Sacroiliitis.

I think your idea of having everything written down for a new doctor to read is a brilliant idea, one all us Fibro sufferers should consider doing when having to see a lot of different doctors.

[MALC19 in reply to Inthesticks]

Hi Inthesticks. I did have a really good rapport with my gp but due to covid he is doing phone appts at another gp surgery so haven't been able to speak to him even by phone.

I don't get on with gp that owns the surgery because he is only interested in how much medications cost. He changed so much of my medication for cheaper meds and stopped tramadol and ketoprofen and Asacol for colitis because they are so expensive so really try not to contact gp during covid as he does all phone appts.

Im sure you are right about rheumatology being behind due to covid, it just doesn't help when you are in agony but i do understand that they get busy.

Came up with idea of typing everything down with medical history etc as its very hard to try and remember what to say especially with brain fogs and memory issues, plus it stops them poking and prodding in very painful areas as it does not help with pain.

I try to keep a journal with procedures, consultants and anything else that is said at consultations otherwise you just say “i cant remember” which doesn't help them understand.

I am so very glad to have joined this site as it gives everybody a chance to get it all off our chests.

Keep well and safe.

[Entela15]

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