This Is MS Multiple Sclerosis Community: Knowledge & Support

I've been in a great deal of pain lately, mostly legs and feet (my arches) The neuro suggested I start neurontin.
Can anyone share their experineces with this drug. I hesitate to add another 'everyday' drug to treat a 'not everyday' issue.
Does it take a few days for it to build to an effective dose?
Can you use it and go off it when you're feeling better? or is it dangerous to do so?
In the pst I have been able to get through these painful spells by forcing myself to take a swim, but this one has me unable to get up off of the couch.
I have to work today (need the insurance), and am worried about the grimace that has taken up residence on my face.
Also, the product monograph warns that fatigue and dizziness are potential common side effects.
Tired and dizzy is my life, I can't imagine adding to that.
Please share you experiences...

hi msm, please check out the sleep issues thread, which deals specifically with neurontin.
http://www.thisisms.com/ftopict-6553.html
also please have a look at this pain thread
http://www.thisisms.com/ftopicp-50149.html#50149

Neurontin is the same as gabapentin which I have been taking for some time.
It has helped me with pain issues, although at times it doesn't feel as effective. I think my body is catching on to it and I'll need to try something else.

If you are on it regularly, do not stop taking it....you need to ween yourself from it by decreasing dosages. You do have play by taking a bit more as needed for a bad day or decreasing the next but never just quit. From what I read there is a maximum dosage (1800mg) so you need to discuss this with your doctor.

It does make me sleepy and a little spacey at times, but was a trade off for eliminating some pain. Your body does build a tolerance to it though and there are other drug interactions.

I'm sharing a personal experience with the med, but I highly and utmost recommend reading more about it:
http://www.medicinenet.com/gabapentin/article.htm

I think it may lose it's initial effectiveness and I'm currently looking into more alternative methods of pain/sleep management. I have nothing to report yet but will be a die hard when I find something that works.

I hope you find some relief.
Be well.

Thanks for your replies,
I'm still ont he fence as to whether I want to take this stuff. I hate the thought of every day. and..
I'm sleepy and spacey every day as it is.!! Not to mention the other potential side effects..tremor, loss of coordination, I'm there already!
I understand that my neurologist doesn't want to send me down the slippery slope of narcotic dependence, but I feel that I would rather take a vicodin a couple of days now and then than be physically dependent on another drug.
I'm in the process of weaning from oral steroid dependency of about 15 years duration that was started as the only available tx for another autoimmune disease called pemphigus. I am tired of always having to have my drugs on me!!I've been held ransom by Dr's offices that wont rrenew till I see them. I may not be insured much longer, TRAPPED!!

Trapped is an understatement with ms. It would be a good title for our hypothetical ms story book.

I completely understand your point. I feel and have felt the same way about pharmaceuticals and dependency. I could be on many more products, but the totebag was getting too heavy when I left the house.

Personally, there are two sides to every story. Either you take what the doc gives you, or you go on a search for something that nature provided. Neither is an easy route.

If you are really opposed to the medication, try searching foods with anti-inflammatory properties, for example celery. I am no expert, but I can say that diet DOES make a difference, as well as vitamin levels. D3 and B12 also made a difference in my life. When my levels were low nothing stopped the pain, not even the neurontin.

The neurontin hasn't killed me, it made my life better when it was filled with pain, but now I'm searching for a way out. I cannot recommend whether to try it or not or convince you either way. I wish I had a solution for both of us. If you need a temporary band aid solution, it did work for me, but long term, it isn't in my cards.

Take care.

I haven't taken neurontin, but I'm in the middle of a flair that's making me consider it. Have you guys heard anything about taking a tricyclic anti-depressant for nerve pain? I've heard some of these, like Cymbalta, work fairly well.

I have been taking Neurontin for a month now. The dose starts out low and is built up over time. I am taking 900 mg a day and will probaby go up to a higher dose in a couple of months. It has helped the pain somewhat and I guess it could be worse. The days I take my Rebif shots I seem to be more tired, sleepy, uncordinated from the neurontin. You stop it just like you start it over time. My Dr said it is the easiest to tolerate and works the best for MS pain so I am trusting his judgement until something changes.

I am going to research natural alternatives in the meantime.

CF

If you take this stuff you need to consider what it is doing to the levels of Vit-D and B12 in your body. Thanks Jimmylegs for putting me onto this.

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My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

msm! you've helped me solve a mystery. i didn't know what kind of autoimmune condition might affect the skin, but now you've put a name on it for me. what version of pemphigus do you have?? what is it like?

hey no worries napay. did you check out the zinc thread?

px, sorry i don't know about the anti-depressant for pain. what exactly are your symptoms?

from other threads on neurontin:
http://www.thisisms.com/ftopic-6526-day ... sc-60.html
here is a list of nutrients that are depleted by neurontin (gabapentin). if you consider this drug for pain relief please also consider that it will subdue pain without addressing any potential underlying nutritional causes for pain or other neurological symptoms...
http://www.thisisms.com/ftopic-6553-0-d ... rasc-.html
nutrients depleted by gabapentin
-vitamin b6
-vitamin b9(folic)
-vitamin b12
-vitamin d
-vitamin e
-vitamin k
-biotin
-calcium
-L-carnitine

source (includes reference list)
http://www.publix.com/wellness/notes/Di ... n#Dni-Supp

Jimmy,

I did some quick google searches, and it looks like some people are using antidepressants for nerve pain. Most of these are associated with diabetes, and I'm not sure if they are routinely prescribed for MS pain.

My symptoms are mainly a burning pain in my right thigh. It's hard to describe, but it feels like the inside of my leg is being soaked in boiling water. The odd thing is, it mainly occurs while I'm sitting in a chair; if I get up and walk around, the pain will go away. But if I sit down again or stand for a period of time, it will return. This started Sunday night/Monday, and seems to be worse later in the afternoon.

I'm also getting some numbness and burning in other parts, like my arm or the tops of my feet, but this is more transient and not as intense.

I've been trying the massive doses of vitamin B, like you've suggested, and that might be helping. I noticed last night the pain wasn't as bad. Today, though, my left arm, feels numb and uncoordinated, and the tops of my feet feel freezer-burned. Fun stuff.

I promise to get there. Kim's not walking so good the last few days and it's just a tough time right now. hard to explain, but I'll get there soon. Ken

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Understanding MS 101: Doctor Talk and People Talk<br /><br />

patientx,

My Mom has been taking Elavil (amitriptyline) for her diabetic neuropathy in her feet for several years. It helps her to sleep also. I also took it for a short period of time. It did not help my MS related issues and it made me feel like crap, so I stopped it.

I'm now on Neurontin - Gabapentin and it is working better for me.

CF

hi px, glad to hear it's somewhat alleviated so far. what meds are you on all in all? is the burning pain your main symptom, or do you deal with other issues too? what supplements do you take besides the Bs?

ken sorry to hear you're having a bad go of it right now. hope things pick up for you soon.

Jimmy,

The only med I am currently taking is Copaxone, for about 3 months now.

Supplements:

Vitamin D; was only 800 mg/day, but I'm bumping that up to 2000 mg/day plus calcium.
Vitamin B complex; 50 mg/day
Fish oil; 5 g/day (but I haven't been very reliable with this)
NAC; 600 mg/day
r-lipoic acid; 100 mg/day

Also, I've been trying to really cut down on saturated fats, no hydrogenated fats, and haven't been eating red meat for the past 6 months.

My symptoms really started last summer, and I was diagnosed in August, so I'm still pretty new to this. My symptoms till now have been a lot of tingling and numbness. My legs and lower back will buzz if they get overheated (either from external heat or over-working them). So far, nothing too bad, and nothing compared to what a lot of people here go through. This burning pain is new, and is the worst symptom up till now.