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Sjogrens Topics => Living With Sjogren's => Topic started by: Whynot2019! on September 13, 2017, 05:05:59 AM

Title: neuropathy
Post by: Whynot2019! on September 13, 2017, 05:05:59 AM
What do you use for neuropathy? I have MS as well as Sjogrens and the pain is in many parts of my body and some times very intense. I try to limit Gabapentin due to side effects. The pudendal neuropathy is helped by Nortryptylin but it makes my eyes and mouth dry. Help!
Title: Re: neuropathy
Post by: Carolina on September 13, 2017, 05:40:01 AM
As far as I know, Gabapentin (and Lyrica) are the only effective medications against the pain of neuropathy.  For me the side effects are minimal (some 'slowing down') and that allows me to take 3600 mg of Gabapentin daily.

Other possible ways to cope:

Cymbalta is on label for many kinds of pain.  All most all antidepressants help with pain.

Meditation and relaxation help with pain.

Mild exercise helps with many kinds of pain, but not nerve pain for me.

NSAIDs and Steroids help with inflammatory pain, but again, nerve pain is not inflammatory pain.

I wish you the best in finding relief.

Regards,  Elaine
Title: Re: neuropathy
Post by: Joe S. on September 13, 2017, 03:05:57 PM
I have used other options for neuropathy. When I was more flexible I used foot patches for it. Now with help, I use an ionic foot bath with less success.

You may find that Acetyl-L-Carnitine and R-lipoic Acid will help with your MS and your neuropathy. My VA doctor was happy to see that I was taking those supplements and she mentioned that they were good for neuropathy.

Good luck in finding what works for you. Check all medications and supplements for side effects, drug interactions, and counter indications. You may find that some meds you are taking are giving you problems. Talk these over with your healthcare professionals.
Title: Re: neuropathy
Post by: vrystaat on September 13, 2017, 08:18:55 PM
I have been on Lamictal for 15 years. Lamictal (lamotrigine) is an anti-epileptic medication, also called an anticonvulsant. Lamictal is used either alone or in combination with other medications to treat epileptic seizures in adults and children. Lamotrigine is also used to delay mood episodes in adults with bipolar disorder (manic depression). But in SS Lamotrigine (an antiepileptic drug) can be used for chronic neuropathic pain or fibromyalgia. Neuropathic pain is pain coming from damaged nerves. It is different from pain messages carried along healthy nerves from damaged tissue (a fall, or cut, or arthritic knee). Neuropathic pain is treated by different medicines than pain from damaged tissue. It is not off-label and is mentioned in several articles: The drug is relatively cheap.
I have used it for so long, that I cannot do without it. A useful action is that it can also be used for Bipolar and Mood stabilizer actions. It has shown promise in combination with antidepressants. It must be taken under strict Physician supervision.
Title: Re: neuropathy
Post by: Carolina on September 14, 2017, 01:37:18 PM
Dear vrtstaat:


Lamictal is in the same category as Gabapentin.  Most of the anticonvulsants, if not all, work for nerve pain. 

I'm glad you have found relief.

Regards,  Elaine
Title: Re: neuropathy
Post by: A Mom on Spin on September 14, 2017, 01:49:22 PM
I, too, take Gabapentine (600 mg three times each day.). I also take the antidepressant Effexor which is used off label to treat neuropathic pain.  Because I have small fiber neuropathy only, my insurance company has refused to cover IvIG infusions which I was hoping would halt the progress of my neuropathy.

 I also take alpha lipoic acid and spend lots of time bathing in Epsom salts and baking powder.  Will have to try the L-Carnatine that joe suggests also.  I have a tough time finding shoes, clothing and bed clothes that don't irritate my burning skin. It's trial and error.  Lots of errors!

Title: Re: neuropathy
Post by: SjoGirl on September 18, 2017, 01:38:58 PM
Gabapentin has fortunately worked for me. I can only take about 400 mg a day or I feel dopey otherwise.