Neurosarcoidosis. 2700 mg of Neurontin daily???

Hi Friends,

I have been prescribed 2700 mg of Neurontin daily (900mg 3 times daily) by my new Neurologist. He repeated all tests plus added some and they all came back normal. He said that Neurontin was a good med for sarcoid. He didn't say I had it. My first diagnosis from another Neuro was that I had Neurosarc. But she wanted a second opinion so she sent me on. The new guy said he would start treating the symptoms and if I had no improvement he would send me to Mayo.

My question is this:

Does anyone have experience with Neurontin? My pharmacist said he has never in his career seen anyone prescribed so much daily. How much do you take? I do need pain relief and some quality of life back. The Cymbalta has helped with my over all mood. And I am in hopes that the Neurontin will take away the pain. Will it stop the the tingling (feels like electric current)?

Thanks for you

bigjoe

Edited March 19, 2009 at 1:47 pm

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Hi Joe, I have no experience with Neurotin but would like to know how Cymbalta has helped you... did it help any of your nerve problems? I wanted to switch.

Sorry to be off topic!

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Cheryl,

Cymbalta makes me a bit nervous. But I can handle it. It helped with nerve pain a little for about 4-5 hours per day after I take it. Within 5 weeks of 60 mg. I was my normal playful self.

Hope this helps,

Bigjoe

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Hi.
I am on Gabapentin, another name for Neurontin.
Today I went from 300 mg 3x's a day to 600 mg 3 x's a day and will eventually be increased again, according to my PC Doc. It does help, I found relief for about 6-8 hours on 300 mg. but I found that I needed the increase as my symptoms have persisted, increased.
I was told that slow increase was best.
To me, your dosage doesn't sound like too much when it comes to the symptoms.
A second professional opinion never hurts.
- Take Care,
Sheryl, (SP)

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Wow!! That seems to be alot of medication.. I take this also but not this much, and it can make you sleepy. I also take Methotrexate weekly, along with a mess of other medications that really don't seem to work. I have been taking them for over 2 years and I can't tell if they are working or not. I do however take methodone 4 times a day with all the other meds. I have become immune to these I believe. But life goes on right!!!
I wish you the best to luck and hope that you finally get some relief.

Lisa

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I've taken various dosages of Neurontin, with and without Lyrica. My neuro said it's hard to take too much Neurontin; excess gets flushed from your body. Sometimes I feel I need more if anything. It does make you sleepy, and maybe forgetful (I can't remember). To me this is the wonder drug that kept me from suicide.

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Neurontin serves as a bandaid. It numbs or keeps you from feeling the peripheral neuropathy. It doesn't heal anything, doesn't fix anything, just covers up the symptoms so you don't notice them. I currently take 1800mg a day of neurontin, 25mg/wk Methotrextate; 15 mg/day prednisone, B12 shot every month; prilosec.
i just started remicade (2d infusion last week.) I have mutlisystemic sarc (nerous system, lungs, spleen, joints, muscles, etc. My pulm dr explained to me that most of the drugs we take for sarc are bandaid drugs. The only ones that actually do anything to treat symptoms are prednisone (inflammation) and methotrextate (other types of inflammation). My Neuro Dr explianed that neurontin is a bandaid drug to keep me confortable so I might be able to do light house work, etc. It doesn't prevent damage, doesn't fix damage. The only drug that will help me fix damage, inparticular nerve damage, is Remicade. It actually flushes the inflammation out and allows the nerves/joints to heal. After my first two infusions, I have flushed out 6 lbs of inflammation and puffiness. My jaw and face puffiness are significantly reduced (I still don't look like myself-but I can see glimpses!) My joint pain has reduced. My neuro and pulm both hope after my 6th infusion I will be able to get off the Neurotin and prednisone.

On a side note-Neurotin is a fairly safe drug, however in some people it can cuase suicide like tendencies. If you have thoughts of suidcide or feel severly depressed, you need to get to your doctor!

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Nothing beats prednisone for neuro pain in my opinion. I have had neurotin, Lyrica and tegretol and all they made me was suicidal, and the lyrica affected my eyes. At that dose, I'd be watching for signs of depression and report any suicidal thoughts to your loved ones.

Pris

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That seems like a lot of meds, I dont have alot experience with those drugs at this time. My plum doc is just keeping me at 20mg of Pred. And I have minny flare ups daily.

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Hi Joe!
I have been on Neurontin for 4 years. I have Neurosarc only. My Neurologist said it's a very clean drug and leaves your system quickly. He started me out on lower doses and increased it as my pain returned. I haven't had an increase in over a year but if I need it I have faith in my neuro and a need to not feel like I am being stung by a hive of bees! I take 800 3X a day. I do have dizziness and less balance when I first get an increase but I always adjust to it. I am also on 60 Cymbalta for my back pain. The first night I took one I woke up without the pain and my frozen toes wiggled! I am also on a bunch of other pills and get a Cytoxin IV treatment every 3 weeks. My ventricles are being clogged by the sarc gunk & I have a cvp shunt because of the fluid buildup. I went with the Cytoxin because my 4th ventricle is trying to clog also. Bummer but it's the hand we were dealt unfortunately. I wouldn't worry about the Neurontin unless you're having a problem with it. Just because your pharmacist hasn't seen that high of a dosage doesn't mean it's unusual. The pain relief is worth it to me, but this whole message is just my opinion and I'm not a doctor just another sarkie!

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By the way Joe I forgot to mention that my neuro sent me to a sarc specialist who recommended the Cytoxin. I see them every 3 weeks unless they're at a conference.

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I am on Gabapentin, generic name for Neurontin. I started taking 400mg 2x a day but I couldn't function through the foggy feeling it gave me. So now I just take 800 mg at night and I have been doing so for almost 2 years. I have pain in my neck and it helps me get a great night sleep! Which is vital for me so I can keep up with job and family. It is the only drug I am taking at this time, but I will tell you I have been coughing for 18 months, Drs are not sure what is causing it -- is it the gabapentin??? Nobody seems to know for sure.
I also have a freind who takes 2400 mg of this drug she has MS. I asked a Dr friend about this amount and he said it's a lot but if she needs it then it's OK.
Hang in there! Everyday with Sarc is an adventure. Friends even on line ones make the journey easier to bear.
Lisa H

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I have had a love affair with Neurontin for quite a few years, but I was never told to start out with such a high dose! The most I ever started out with was 300mg 3xday, then increased it gradually, over a period of months. The most I ever took was 24 mgs but I know some people take more. If you take this dose and have trouble, ask your doctor about getting used to it more slowly. And good luck - it REALLY helps me with my neuropathy.

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Oops that is supposed to be the most I ever took was 2400 mgs, not 24mgs.. sorry. Sarc head... ;-)

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Thank you so much for all of the responses. You were all so helpful. I am on a gradual increase over the course of several weeks. I have already experienced good things and feel this may be a good drug for me. thank you again

bigjoe

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What are the symptoms of Neurosarc? I know everyone is different. Just wondering. I have a new symptom and it is in my arm, shoulder, then neck and spine. I have had both ears to hurt for 3 weeks now, and over the weekend, I had 3 headaches. I never have headaches. I realize that it could be sinus and allergy but the spine bothers me. My orthopaedic told me that if they found something in the spine, I would have to see a neuro, not him. Another 2 months waiting on an appointment.

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slwhite,

My symptoms are: head to toe tingling and pain. The pain is nerve pain. It comes and moves around all over the body. Sometimes it lasts a few seconds and sometimes it lasts hours. Last night I woke up three times in pain. Once I had to sit up on the edge of the bed to wait for it to go away. It was in the middle of my back just right of my spine. I also had pain in my right ribs and then my left. Other pain last night was in my feet, arms and legs. Before I went to sleep I had pain behind my right eye that was throbbing and lasted for a couple of minutes.

The Neurontin is for the nerve pain. I have to build up slowly and I am looking forward to having more of it my system. As far as my ears are concerned I have pain sometimes, but mostly my ears itch on the inside daily.

Thank you for asking.

Joe

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I hope your Neurontin is building up in your body. Your pain will start to disappear with the increase of Neurontin as you keep taking it. Good luck to you!

Neurogirl

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slwhite,

I forgot to add that I have constant bone pain as well. I have three lumps on my bones. One on my left arm, one on my right shin, and one on my right radius (which just popped up over the past week). The worse bone pain is in my left arm.

Blessings,

Bigjoe

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I was just perscribed Neurontin. My Dr. said that dosing is hard ti figure, because you can go up to 3200, you just have to see what dose makes you feel best. However, my pharmacist, who is really excellent and up on all my meds, said that after 1800 it really doesn't do anymore to help. Hope you are feeling good.

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I had to come off of it. It made me more dumb than Is my new normal. I have a lot of problems with my ability to get words and Nurontin was a real killer. I currently am taking very little for pain. I take lyrica and over the counter stuff if I am completely beat down with pain in the evening. I hope it works for you. Blessings, joe

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