Neurontin is helping pain!

I have been living with systematic Sarcoid for 7 years and have been on Methotrexate since July. For me my biggest complaints have been the fatigue and the pain. Well, last week my doctor put me on neurontin. It has been a miracle drug for me! The pain is nearly gone which in turn has lowered the amount of fatigue I'm suffering from. I had to write to tell everyone because I'm hoping it might benefit a lot of you too.

Here's to your good health.

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Wow that is such good news!! I will keep that in mind as I learn what works for me.

D

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I'm so glad that's working for you. I'm going to a rheumy in a few weeks. Maybe they'll put me on that for my pain. It worked for me when I was diagnosed with rsd. So much that I'm walking again. So excited for you!

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Glad to share your good news. Keep up the good work.

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I just started methotrexate las week and I am weaning off pred. slowly.
Did the neorontin replace the Methotrexate?

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I agree. I was put on Neurontin 3 weeks ago and it has greatly reduced the arm and leg pain I was getting. It hasn't really helped me with fatigue so far.

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My neurologist prescribed it for me, and it was like I had some of my old self back. I was shocked that results like that from my very first dose. I was in disbelief. However, after taking it for a few months, the pain slowly came back. I hope that it works for you as long as you need it, but I certainly can agree that it helps with all the aches and pains that afflicts us and limit our abilities. It has no bad side effects or long term damage like vicodin or other narcotic drugs and it is not habit forming. I think I'll ask for another prescription since it has been months since my last dose. Hopefully, I can enjoy not living in constant pain for a few months again.

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Many thanks to all for enjoying my good news.

Denyse-no it did not replace the methatrexate. It is strickly for the horrible pain.

Mikeculkin-I have to somewhat agree with you regarding the fatigue. What I am finding is that my tolerance level is better. What I mean by that is that I can now work all day, make some dinner before I collapse. Prior to the neurontin I was struggling with the pain & fatigue so much that I either didn't make it to work, barely made it through work and never cooked!

Lisalee-I too felt better immediately. I know that my tolerance could build and the pain could return but I'm like you seem to be..willing to try it for any kind of relief. I'm on the lowest dose possible right now and was told it can be taken way up if needed so I'm hopeful that I'll be without the extreme pain for a while. You might check and see if your dose can be increased too once you're on it and feel that old pain returning.

I read and read about things that can help us Sarcee's so I am glad that people saw the post and maybe some will get the same relief that I am getting. If it helps even one person I'll be greatful.

Take care all and remember... Together We Can!

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Hello, I thought neurotin was for neuropothy. Do any of you have neuropothy. I have it in my feet , legs and arms and hands...I have allot of rib area pain. I am wondering if it might help me. I take ultram for pain now. But it doesn't help all my pain. I just deal with it. Have had it since 1997. Some days it is all I can do to just get out of bed...
Best to you,
PillBug

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@TLC 73

first of all that's great news. Like PillBug mentioned my rib area is wild with pain too, do you think it might help this area?

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@TLC73 - thanks for posting and i'm so glad you're getting some relief! does neurontin help with fevers? do you have fevers? does it help with headaches? what kind of pain do you have? seems like there are so many variations here. :)

@allinmyhead, @TLC73 - when you say rib pain, do you mean an ache at the base of the ribs where the liver/spleen hang out? or is it different? i have aches/sensitivity there too...

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@sadiec
On the right side (front), from just under my chest to the base of my ribs. I was blaming post surgery pain from a biopsy 4 months ago, but this is sarc. My doc says I might need to get tested for sarc in my ribs, he needs to do more homework first. It's a constant ache, painkillers aren't working and it's having an impact on being able to keep food down too.

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allinmyhead & pillbug,

I suffer from pain in my joints, particulary hips, shoulders, feet, hands, head and my ribs on the right side too. My rib pain is either Sarc in the ribs or it's from the Sarc that's been confirmed and is taking over the right lower lobe of my lung.

I think this might work for both of you. It has no nasty side effects so it's definately worth trying to see. I cannot take narcotics and my pain was so bad that I wasn't sleeping and was barely making it through the day at work. My goal is to really try to hand on to my job as long as I can so my Doctor is working with me in every way possible. He had been thinking about my pain and lack of ways to treat it and decided to try this. He said if it worked it would be because it's calming the nerve receptors for pain.

I'm still suffering from a very little, very barely there pain but he says we can increase the dose until we totally get rid of it. Having been ridden of the majority of the pain has helped me have some increased energy which is awesome. It's enough to get me through my day. Then I go home and try to make dinner, then I crash. Of course, I'm very lucky compared to many on here who are suffering so much that they cannot do anything.

Let me know how it goes for you if you try it. I'm interest in seeing if it works for a lot of people.

Together we can!!!!
TLC

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hi everybody i had sarcoidosis for 11 years know and i have asthma, gluacoma, COPD, osteoporosis, diabetes type 2, coronary artery disease, heart mummur, high blood pressure, thyroids disease this right behind each other each i take all different kind of medicine everyday if want live so you had yours for 7 years i had mine sence november 17, 1997 and hard sometimes i have my good days and my bad days i just thank GOD that i'm still here on earth to be with my five kids and four grandkids and my two son-in-laws hey just keep the faith and the believe and the understanding that you and JESUS have just thank him for waking-you up in the morning and letting you see a another day keep the faith in your life and pray and read your bible everyday and may GOD bless you oh my named is alberta crite and have a bless day too.

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I'm right there with you with neurontin helping my fibromyalgia pain, and it also helps all of my sarc muscle tremors and twitches. It calms down the neuropathy in my legs enough to get some sleep which is a blessing.
I'm glad that the neurontin is giving you some relief.

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After weaning down on my prednisone, I found that my arm and leg pain came back. My sister, (a registered nurse) stated that she felt that neurontin would be a good medication because it seemed like nerve pain that I was experiencing. I brought this up to my rhumatoid doctor, and his reply was that he does't perscribe that kind of medication. He just upped my dose of prednisone again and increased the amount of time on the dosage before I tapered off again. He also increased my metho to injections. This is my second week on injections, and I have decreased my pred. So far, the pain has yet to return full force. I am uncomfortable, but I can deal with this. I would say that many doctors try to deal with issues in many different ways. I am very glad to hear that your doctor has found something that works for you. Let's hope that it stays that way.

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Thanks to everyone for their encouragement and well wishes!

I hope some of you can find some comfort thaat I have found with this med.

God Bless.

Together we can!!!

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i am also on neurontin but it was prescribed for the injuries i have in my spine but maybe thats why i havent had alot of pain either i have large lumps on both my arms and i am getting them in other areas but i havent experienced alot of pain from them some aching but not severe pain

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I thought Nuerontin was for nerve pain. I take it for trigeminal neuralgia .

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