Medicines That Help/Don't Help With CIDP Pain

Hi Folks ~

Here is the condensed version of my history of CIDP. In 2003, I couldn’t call the cats into the house for breakfast. My mouth wouldn’t “pucker.” I thought at 42 I had a stroke. I was whisked to the hospital and by the time I had arrived my face was “frozen.” This being Columbus Day weekend, the Neurologist was off duty (small hospital) and they said I likely had Bell’s Palsy and come back in the morning to see the specialist. Next day, the Neurologist said it was a rare case of bi-lateral (both sides of my face) Bell’s Palsy. Sent me home with Prednisone and use a heating pad on my face.

Soon, I began to lose feeling in my feet, arms and hands and began not being able to walk more than 30 feet. But, on the positive side, my facial movement began to return slowly. After weeks of testing (some of those really sucked) I was diagnosed with CIDP. I began IVIG and oral steroids again.

Now, 14 years later, I am still trying to find the perfect mix of medication to deal with my pain. I am fortunate, I can walk without any crutches, stand for a while, drive a vehicle and use my hands to type. My feet have the sunburned feeling all the time and have the sharp “ZINGS” whenever they feel like it. I have the aching, sunburned feeling in my hands mostly every night. My neck has never been good, but it hurts when I drive long distances. But, compared to many of you here, I consider myself lucky.

Medicine I am taking: Topomax 125Mg daily, Cyclobenzaprine 10 Mg & Alprazolam .5 Mg at Bedtime, Medical Marijuana (As needed) That’s it. I feel that I could be taking something better, non-narcotic, to control my pain.

For over a year I have been on Topomax since Gabapentin, Lyrica (and another one ?) way back all gave me weird side effects. I am only using the “flower” of marijuana (smoking) and am researching the different other forms of ingesting marijuana since CIDP was only recently added as an approved disease for legal medical marijuana in my State.

Marijuana does help. I have read so many others here at Ben’s Friends say the same; pain subsides, relaxation causes less burning and “shocks, zings” and in moderate use most would recommend it to others with CIDP.

As for the Topomax and Cyclobenzaprine, I am asking if anyone has had these and maybe gone to a different drug that has helped them better. Is there any success stories from folks reading these forums that know of better drugs to combat the nerve pain that could make us with CIDP more educated when talking with or Dr. about medications.

14 years of this has been a journey. I never gave up hope and came a long way from my first diagnosis. I read all the new posts here and feel each and every one of your frustrations, pains and disappointment. I have been right there with a lot of you.

My longest minutes were watching the IV bottle drip the last few drops of my IVIG so you I could just get the Hell out of that room and go home! Five hours in that chair every day, for six weeks drove me crazy.

Lets all talk about what medications have worked - and not worked - so we can then talk to our doctors and maybe make a few of us here feel better.

Thanks and peace to all here,


1 Like

Thank you for your message. Ive never posted, but here goes.
I’ve tried SO many meds, as well. (CIDP since 1998) Lyrica/gabapetin really helped but also gave weird side effects. Metanx definitely helps to prevent stinging legs that prevent sleep. My doc wasn’t aggressive with IVIG , as my blood pressure got too high & an ‘episode’ occurred. That was years ago & I’d like to try it again b/c I’ve heard it’s improved. I succumbed to hydrocodone 8 years ago. It no longer helps completely. I strictly take 2 a day. Most days it takes the edge off. I’d like to purse going to one of the centers for CIPD excellence next year. I believe there are now 9 in the country.
My doc has talked about strong steroids; I’m terrified as I saw my beautiful, late sis-in-law’s journey through RA with them.

Thank you for your reply, marybgast. My sleep was so disturbed that Topomax was prescribed to minimize the “zaps” that were occurring every 15 seconds when they were at their worst. I had gone weeks with only a few hours of sleep per night. After a few weeks of Topomax, the zaps slowed enough to sleep. I will ask my Dr. about Metanx and see if he feels that this may be something to add to my current scripts or replace Topomax. Thanks again and best to you. Feel free to keep in touch with me on how you are doing. -Ross

Thanks for the reply, Ross :slight_smile: Again, good luck.
Metanx is a medicinal food (vitamin, I guess) that I understand many docs put them self on for its preventative benefits. It’s prescription & specially compounded; I pay by month aprx $60. I’m one to go as generic as possible, so got off a couple times (tired of paying), but couldn’t sleep.
An added plus is that I haven’t been ‘sick’ for years!

Hi Ross, Got the same same Zapps and Zings in my feet. I was diagnosed with CIDP only 4yrs ago. Under went IVIG ever 3 weeks 80gms of gmmagaurd. I’m chronic non-responsive to IVIG. Doc put me on methotrexate, body didn’t tolerate it well so she took me off. I’m. Currently on a cocktail of 60mg of Cymbalta, 100mg of Topomax, and 450mg of Lyrica daily to control the pain. Yes, it was excruciating. I’m feeling ok. Hands and feet are still numb. But I can still walk, for now. Thank God, no side effects from the Lyrica!!!

Thanks Bobby for your input. I am glad to hear that Lyrica is working for you. So many have side effects from that one. I am also happy you, like me, can still walk. My numbness in my feet and hands was what was left over after a year of IVIG and steroids. I have been living with that for 13 years.

Just as a side note, I no longer am working with the initial neurologist that diagnosed and treated me, I work with my primary physician. He is a wonderful doctor, but I know more about CIDP that he does. So for the most part, he will listen to me when it come to trying different medications.

Haven’t commented on this forum for some time, but this is a topic I look for, in hopes of finding a nugget I can use!
I’ve had CIDP for about 6 yrs, been on 80mg a day of prednisone for first two yrs with some success, not counting the roid rage! Tried Gabapentin, bad side effects!
After finding a Neurologist with CIDP knowledge, he put me on IVIG 90 mg of Gamunex.
I just learned to live with the sharp pains in my feet! UNTIL, I read a GBS post by shear luck about a supplement called R-Lipoic Acid…not one to just jump on a treatment I researched it and found blind test studies had been done with injections of 1200 mg of R-Lipoic Acid for feet pain on diabetes and CIDP patients in Germany with some success… I don’t remember the percentages but it looked good enough that I went on Amazon and bought 60, 300 mg capsules of NaRALA R-Lipoic Acid and started with 600 mg a day. I started on the lower dose because the writer indicated might upset the tummy. How ever after a couple weeks “Shazam” no shooting pains in my feet! I took the R-Lipoic Acid a couple more weeks then stopped…the shooting pain did not return for a month or so…now when I get a sharp pain in my feet I take a dose or two and pain is gone for weeks at a time!
If you’re new to CIDP I would recomend this before Gabapentin and if you are on Gabapentin and want to try this, Gabapentin like Steroids you have to be weened off it!
Also only the R-Lipoic Acid works not the alpha or just Lipoic acid it has to HAVE the R.
God Speed Everyone!