Gabapentin/Neurotin Alternatives?

[SjoGirl]

Hello all,

Like others I am on Gabapentin for neuropathy and nerve pain (some from impingement due to arthritis and DDD in my spine).

I am only on 600 mg per day, but it's making me so spacey I can't stand it. I still work and need to take care of things at hone. I'm falling asleep really early, brain fog much of the day. and just feel sluggish at times. I've gained a bit of weight, but nothing dramatic (yet).

Has found a better alternative?

[trc1962]

It is hard to find stuff that relieves nerve pain besides the 2 drugs you mentioned. I just can't function on even 200 mg of gabapentin - makes me feel out of it, tunnel vision and anxiety. As a teacher I have to be on my toes and so I just live with the wierd stuff of neuropathy when it happens. I should add that my neuropathy is weird in that it doesn't always show up and also presents with some weakness too, which is not supposed to be part of SFN. Anyhow, hope you can get some relief!

[Jasper]

Rituxan infusions vastly improved my neuropathy.

[SjoGirl]

Thanks Jasper. My neurologist is recommending Cymbalta. I've been on an SSRI in the past, didn't feel foggy, but didn't feel like myself either. I need to give it some thought.

[irish]

Lyrica is another drug that has been our for a few years. It is similar to the gabapentin but for some people it works better. I have heard that it costs more but don't know the details. It might be that this drug would help you better without making you so tired.

Lyrica is used for neuropathy caused by many different disease processes. Diabetic neuropathy responds to this much of the time also. Good luck. Irish

[Dawnmist]

Tramadol can help. Cymbalta can too. Lyrica can, but as that works on the same receptors in the body as Gabapentin does you would likely find it also makes you too sleepy/spacey (my own experience has been that Lyrica made me a little more sleepy than Gabapentin does). The tricyclic antidepressants can help some people, but those are very drying so are not really appropriate for someone with Sjögren's. Mexiletine (oral Lidocaine) can help some people. Lidocaine patches applied to the worst affected areas can help - but there is a limit of 3 x 10cm x 14cm patches per day used 12hrs on/12 hrs off. The patches can be cut to size/shape, so you can do things like share a single patch across both palms and some fingertips. Some people can get some relief from a capsaicim-based cream, but a lot of people (myself included) find the burning it causes intolerable - if you ever did try it I'd recommend using a very small test area first! I have seen several people say that they have had some relief from medical marijuana, so if you are in an area where that is legal it may be worth a try.

It is quite common that someone will end up needing to use a combination of the above - I use Tramadol, Cymbalta, Gabapentin daily with Lidocaine patches on hands and feet some days as well. Some of the medications (like Tramadol & Cymbalta) can cause problems when mixed - the amount of Cymbalta I can take is limited, as there is a risk of Seratonin Syndrome when taken with Tramadol too - but I have tried dropping out Tramadol to allow increasing the Cymbalta dose and I was severely worse off. Likewise dropping out the Cymbalta made thing much worse too.

All of the above is simply pain management - it does nothing to slow/stop the progression of nerve damage. The only way to treat the nerve damage itself is to treat what is causing it. Assuming that you don't also have another condition as well like Diabetes, Coeliac disease, etc, that means treating Sjögren's/your immune system. Sjögren's nerve damage is progressive. The most common treatments used for autoimmune-caused neuropathies are IVIG, or Rituximab. Both of these are expensive, and not accessible in some parts of the world (I cannot get either in Australia). Other immune suppressants like Cellcept or Imuran have helped some people a little. Of course, there are risks associated with ALL of these options - mucking around with the immune system can cause you to have much higher risk of infection, etc, and put you in danger from some viruses that normally would be destroyed by the immune system (such as a 3 in 100,000 chance of getting the JC virus, which causes Progressive Multifocal Leukoencephalopathy - brain damage that will normally be fatal). I think IVIG has less chance of doing this, as unlike the others it is an immune modification rather than an immune suppressant. Some doctors feel that the risks associated with immune suppression are too high to warrant using them to treat sensory neuropathies.

[wendyoh]

Tramadol can help. Cymbalta can too. Lyrica can, but as that works on the same receptors in the body as Gabapentin does you would likely find it also makes you too sleepy/spacey (my own experience has been that Lyrica made me a little more sleepy than Gabapentin does). The tricyclic antidepressants can help some people, but those are very drying so are not really appropriate for someone with Sjögren's. Mexiletine (oral Lidocaine) can help some people. Lidocaine patches applied to the worst affected areas can help - but there is a limit of 3 x 10cm x 14cm patches per day used 12hrs on/12 hrs off. The patches can be cut to size/shape, so you can do things like share a single patch across both palms and some fingertips. Some people can get some relief from a capsaicim-based cream, but a lot of people (myself included) find the burning it causes intolerable - if you ever did try it I'd recommend using a very small test area first! I have seen several people say that they have had some relief from medical marijuana, so if you are in an area where that is legal it may be worth a try.

@Dawnmist, good info on pain management

I have been experimenting with pain management techniques/supps/meds for sadly about half of my life now.  I have tried most things I think that I would want to with lately little success in the medication department. Your post made me wonder though about mexiletine. I hadn't heard of taking lidocaine orally before but do have some ointment and patches which weren't that effective for me. Topically peppermint essential oil has been the most effective for me with my neck and feet pain. However, when I had significant lidocaine injections at oral surgeon a side effect I liked was it decreased my neck pain too for a while. (I was offered to try at pain mngmt a cervical epidural of steroid with lidocaine but haven't tried it, am scared of injections risks and that the steroid would make me too irritable etc for too long--hated prednisone when tried it once).

When I try meds that are strong or might be psychoactive etc I literally start out with crumb usually to test water because of my extreme sensitivity. I am intrigued to try mexiletine but wouldn't have high hopes that I could tolerate it orally with my track record....everything has been a bust so far due to side effects and I got to try the gamut of classes over the years. There are a couple things I can do a little of now and then if need be. But my question for you is do you know if that is one most physicians feel comfortable to prescribe and also I did a search and see you can actually get lozenges or oral spray online of a med called Orofar that has a little lidocaine in it, do you think that would be a way to test the water? I would assume it has similar chemical comp as melexitene and might be a way to try small dose. They even sell it on ebay. Anyway, I would be curious if you or others have any experience with it. but neuropathic pain is a pain!

[Dawnmist]

@wendyoh Mexiletine was originally used for heart issues but they found that it also worked for pain, and there is a small percentage of people with SFN where it will be one of the only medications that does work for them. It needs to be titrated up carefully, as absorption varies significantly from one person to another. My pain specialist said to pay attention for any tingling in the lips/around the mouth - if you get that, you've reached the limits for how much you can take, and actually need to reduce the dose a little. Too high a dose puts you at risk of cardiac events or seizures - that tingling is the warning sign that indicates that you have to back off so that you are not at risk. I suspect that you are likely to need to go through a pain specialist (or sometimes a neurologist) to get it. I know that within Australia it used to be on the PBS, but when cardiologists migrated to using newer heart medications it was dropped and now is only available through a compounding chemist or by "special access" (which requires individual approval by the Therapeutic Goods Administration - Australia's version of the FDA). Both of those options are expensive here. I did try it, but due to a combination of the cost and delays in getting TGA approval I wasn't able to titrate it beyond a certain point. I don't know if it just wasn't going to help me, or if O didn't get the dose high enough to do me any good, but I really didn't get any benefit from the dose I did take.

I forgot some of the less common pain management options, partly due to expense/awkwardness of them. Lidocaine infusions can help some people. Implanted spinal cord stimulators can help some people - but I have also seen several people say that the stimulator made the pain *much* worse for them. A few people have had some success with an Implanted pain medication pump, but they have a hard/frustrating time trying to get it refilled if they ever have to change specialists (e.g. due to moving interstate, or their specialist retires, etc). Some pain specialists will also try ketamine infusions. If they work you're supposed to get several weeks to several months of pain relief - but I have not seen anyone with SFN report success from these (though they can be effective for fibromyalgia). My own experience with ketamine was that I had a rare reaction (affects about 1 in 50 people) where the ketamine actually caused burning pain - I felt like I had been dropped into a pot of boiling water and everything burned.

I have been participating in a few SFN groups on Facebook, where people have been sharing what has and has not worked for them. It has been very interesting reading.

There are also some herbal supplements that can help. B12 if low can cause SFN. B6 if *high* can cause SFN - so if you already have SFN, you should avoid taking supplements that contain additional B6 unless you are specifically found to be in need of it, and get them to keep an eye on when it is back within the normal range so you don't raise it too high. R-Alpha Lipoic Acid and Acetyl-L-Carnitine (both supplements) can help some people too - but Joe has more experience with herbal treatments than I do.

[wendyoh]

thanks Dawn
a pain specialist gave me a compounded cream to try in the past that had NSAID ketoprofen and ketamine. I was curious to try ketamine as there is some research that it could help with fibromyalgia and stenosis....I have to say I didn't like it, I felt I absorbed it thru  my neck and got the psychoactive effect not just pain relief. It reminded me of dextromethorphan, the over the counter decongestant --both have pain relieving and hypnotic properties and they both creep me out, not worth the medicinal effect for me.

[SjoGirl]

Hi all, and thanks for your many messages and for the in-depth info (reasons why I love this Forum!!).

Dawnmist, the reasons for my neuropathy are degenerative disc, stenosis and arthritis from the top of my spine to the bottom and SjS. The DDD is not so bad or such that surgery is indicated. I can't take Plaquenil so have zero defense against progression of SjS or concurrent issues.

Wendyoh, I've had lidocaine a couple of times, e.g., bone marrow biopsy numbing drug, and do not like the way it makes me feel. I get quite nauseous as it wears off and felt like I was having a heart attack after the first time I had it.

I take Gabapentin not just for nerve pain, I also have ocular migraines and myoclonus.

My neurologist ordered Cymbalta today, 30mg per day and wants me to take both drugs. He is willing to let me titrate off of Gabapentin or take less if the Cymbalta works, but said he tends not to be an optimist about such things. 

Thanks again everyone for the education and for your support, both are much appreciated!

[cccourt1942]

SjoG:  I have NOT taken Gabapentin/Neurotin yet!  The orthopedist has advised it for a strange back condition...am awaiting approval from my neurologist (due to meds taken for another condition thru him).   Fuzzy brain, etc described within this thread scare me.  Does anyone have anything GOOD to say about Gabapentin?  Seriously? And is Lyrica really better? 
Thx for speedy answer. Should hear from my neuro today.
c3

[SjoGirl]

Hello Ccourt,

I found that if I take 500 mg of Gabapentin I am just fine, don't get the fuzzy brain thing and get a fair amount of pain relief. However, pain goes down and fuzziness up if I go up to 600 mg, just the way God made me I guess.

My neurologist prescribed Cymbalta yesterday, I plan to start it over the weekend (when I don't have to be somewhere), he said it and Gabapentin compliment one another and added med could reduce pain another 20-40%. Will let you know how it goes.

FYI my neurologist said he would have to diagnose me with fibromyalgia to prescribe Lyrica. He was willing to do so, but I've heard folks talk about pretty significant weight gain with Lyrica. I am a potential candidate for Type II diabetes so weight gain is to be avoided.

Hope this helps.

[quietdynamics]

SjoGirl.. I have been taking Gabapentin for a number of years in combination with Cymbalta to manage pain which made function very difficult.

Gabapentin: The half-life is 5 to 7 hours, meaning the drug needs to be administered 3 times a day to maintain optimal plasma concentrations.
Gabapentin; peak plasma concentrations around 3 hours post-dose.

Oral Bioavailability: Gabapentin bioavailability is not dose proportional; i.e., as dose is increased, bioavailability decreases. Bioavailability of gabapentin is approximately 60%, 47%,34%, 33%, and 27% following 900, 1200, 2400, 3600, and 4800 mg/day given in 3 divided
doses, respectively. Food has only a slight effect on the rate and extent of absorption of gabapentin (14% increase in AUC and Cmax).

Not sure how your Dr. has you dosing med?

People do react differently to meds?

* Are people who are having problems being dosed 2X's /day?

I did have an "ER event" with follow up care with Neurologist .. so added Topamax. Found that that beyond the ER systoms, the funny bone sharp tingling and  some other symptoms became managed.. so the "pain protocol" grew.

When I was changed to Methotrexate,and Vit D and B deficiencies where addressed, I found I was able to reduce Gaba (but, appears symptoms over this winter escalated .. so either I need to return to higher level of med and get out in morning sun and walk more? or have labs run. I do know since I broke knee that I have osteo.. another page to start.)