Looking to connect with people who have non-diabetic neuropathy

Posted by Ann broussard @user_ch98d0b5c, Aug 6, 2018

Would. Like to find people with this issue

Interested in more discussions like this? Go to the Neuropathy Support Group.

pkagarwal | @pkagarwal | Aug 15, 2022

I started with 100 mg of Gabapentin at night and slowly started to increase and was up to 2400 mg at night. Each time it would work for a few days and then stopped having any effect. And eventually 2400 mg was not doing any good. I added 30 mg Duloxetine to the mix and that was good for a couple of months. Then that stopped working too. Increased Duloxetine to 60 mg and so far it has been effective for the past 4 months. i have slowly started to reduce Gabapentin (100 mg every two weeks). I am down to 1500 mg of Gabapentin a night along with 60 mg Duloxetine. Let's see how far I can take this. Fingers crossed.

mrw70 | @mrw70 | Aug 15, 2022

In reply to @poodlemom6 "I started with Duloxetine by itself and had to add Gabapentin as my feet would not..." + (show)

Okay , good to know --glad that works for you

pattisd1955 | @pattisd1955 | Aug 15, 2022

In reply to @bonniethompson1234 "Hi, Patti! I felt that not much was helping with the gabapentin. But I’m experimenting a..." + (show)

I see. I wondered if it might have something to do with side effects. I’ve cut back on my caffeine intake starting today and am hoping it makes a difference. Best of luck to you💜

pattisd1955 | @pattisd1955 | Aug 15, 2022

In reply to @pkagarwal "I started with 100 mg of Gabapentin at night and slowly started to increase and was..." + (show)

I hope it works for you!🤞🏼

artsyseven | @artsyseven | Aug 16, 2022

In reply to @bonniethompson1234 "I take gabapentin twice a day without much relief but last year we added duloxetine (Cymbalta)..." + (show)

Try spreading the gabapentine out over multiple times a day instead of two times of taking it. I found if I take a bunch at a time then it actually causes the nerves to be worse. I am able to spread mine out over 5 times a day. It made a big difference as it keeps the drip steady in my system nicely.

chuckc | @chuckc | Aug 16, 2022

Hi Chris,
I have had PN for over 30 years and now I have an issue with balancing. A year ago I was in PT for balancing but nothing seemed to work. I am interested in your balancing exercises. If I close my eyes while standing I would fall.
Thanks,
Chuck

poodlemom6 | @poodlemom6 | Aug 16, 2022

In reply to @johnbishop "Hi @poodlemom6, Welcome to Connect. Thanks for sharing your experience with Duloxetine. Do you mind sharing..." + (show)

Thank you - glad I found this group. I was diagnosed with Invasive Ductal Carcinoma (IDC) in February of 2021. Had a lumpectomy and due to my Oncotype score, I had Chemo and Radiation in my treatment plan. Radiation was completed after Chemo. I had four rounds of AC in May and June of 2021 and 11 Taxol treatments beginning in July of 2021. I did 10 treatments of Taxol at full strength, one at half-strength and did not have the twelve dosage due to the neuropathy in my feet. That is why I take Duloxetine (60 mg) and Gabapentin (300 mg) at night and have been since December of 2021. I have not tried other treatments.

bonniethompson1234 | @bonniethompson1234 | Aug 16, 2022

In reply to @artsyseven "Try spreading the gabapentine out over multiple times a day instead of two times of taking..." + (show)

Hi, Artsy! I have 100 mg capsules and usually take one in the morning and one in the evening.

Arthur W Roberts III | @awroberts111 | Aug 17, 2022

In reply to @chuckc "Hi Chris, I have had PN for over 30 years and now I have an issue..." + (show)

I've had Non-diabetic PN for ten years, resulting from a very small cancer in my spinal chord at T11. My balance is shot, because my doctors did not discover it until my B Cell Lymphoma was one and a half years old. It is very small, but it doesn't need to be big to interfere with nerves in the spinal chord. If it had been radiation treated within a couple of months, maybe I wouldn't be in a wheelchair.