Good evening @jlf2.....I was searching for a particular post and I just saw yours about Medicare.
I just might have a couple of suggestions for you. Last year I had a "heck" of a time getting coverage for a new product for neuropathic itch called Dupixent. The first thing I discovered was that this injection product was not even listed on the Medicare Formulary. I had to request a special exception just to have it placed on the Formulary "momentarily". After that was corrected, I found that the copay was way out of my monetary league.
This "itch" had been a major cause of my most difficult and fearful days. I spent time in the ER and my dermatologist even came in from her vacation to tell me to stay out of the ER and Urgent Care because they wouldn't know how to help me. She ordered a topical medication at least for my face which was inflamed and itching. She had already submitted the prescription directly to the company for approval and I was ready to go.
I happen to have a daughter who has spent 30 years working with patients in a dental surgery center. She took over the search for the copay and lo and behold she got it. I don't know all the details but I suspect there are some issues relative to those of us over the age of 60. Pharmaceutical companies need to qualify for additional research and development funding before the current products face the creation of generic copies with much lower prices.
So.....the medication was temporarily placed on the formulary and I was approved for the copay support. Whew....it took a year. The medication worked from the first time I tried it and has given me another chance at living an itch-free and therefore pleasant life. You may be able to find a way to fund your prescription by digging a little deeper.
May you be free of suffering and the causes of suffering.
Chris
@jif2......I forgot one other important issue. In order to qualify for the co-pay coverage from the drug company I had to submit the "refusal" I received from Social Security to provide support for my low-income status.
Hi there all. My PN is a result of inflammation of my arteries. The blood flow is diminished and the large nerves are affected.
I’ve tried Lyrica, and the rest. I couldn’t take anything without falling asleep.
For me, I use lidocaine lotion when things get bad otherwise I just wait it out…
My biggest problem with my feet is Raynaud’s disease. Now, that causes me pain! It requires me to keep my feet, and sometimes my hands warm. Ugh!
I have peripheral neuropathy due to Arachnoiditis. Had a stim put in 2 years ago and now it's failing. I also have Ehlers Danlos and found out too late, I shouldn't have ever done the repeated joint injections into a bunch of my joints. So, no injections.
I also have hashimotos and since 10', no thyroid. I was rx'd the same ol' gabapentin as everyone else. I did research into gabapentin and discovered it is a thyroid inhibitor. Plus, it didn't do much for my pain.
Going back to the Dr who installed my stim. I think the leads may have moved. Does anyone have a newer stim they really like? Right now, I have the medtronic stim.
I have been diagnosed with idiopathic peripheral nephropathy with pain in my feet only at night, and sometimes up my legs as well. I have tried Gralise, which worked but my insurance company would no longer pay for this medication. I've tried Metanx as well and that also worked and my symptoms went away. Now my symptoms are back and I'm using CBD oil on my feet at night. This helped for a while, but now I am experiencing pain in my feet during the day as well. I'm at a loss at to what to try next because I have also tried Gabapentin 100 mg, and I am loathe to try a bigger dose because of serious side effects. Also, I read that the Covid 19 vaccine can exacerbate PN, and I'm wondering if that is the cause of renewed PN. Whatever the cause of the renewed pain, I'd like to find some treatment that will reduce or eliminate the pain so that I can sleep at night.
I have been diagnosed with idiopathic peripheral nephropathy with pain in my feet only at night, and sometimes up my legs as well. I have tried Gralise, which worked but my insurance company would no longer pay for this medication. I've tried Metanx as well and that also worked and my symptoms went away. Now my symptoms are back and I'm using CBD oil on my feet at night. This helped for a while, but now I am experiencing pain in my feet during the day as well. I'm at a loss at to what to try next because I have also tried Gabapentin 100 mg, and I am loathe to try a bigger dose because of serious side effects. Also, I read that the Covid 19 vaccine can exacerbate PN, and I'm wondering if that is the cause of renewed PN. Whatever the cause of the renewed pain, I'd like to find some treatment that will reduce or eliminate the pain so that I can sleep at night.
Welcome @mkay1, Sorry to hear that you are struggling to find a treatment to relieve your neuropathy pain. I also have idiopathic small fiber PN and posted my story in another discussion here - https://connect.mayoclinic.org/comment/310341/. There are a lot of different treatments that members with neuropathy have found helpful. Learning as much as you can about your condition and what treatments may help is one of the tools in your control to help yourself. Here are a few discussions that might provide some help:
Thank you for the referrals. I'm eager to dive into reading them. In the meantime, about lifestyle changes: I walk 30 minutes everyday on a treadmill, as well as neighborhood walks, my weight in on target for my height and age, and our meals are Mediterranean oriented. I don't take any drugs, and use a number of supplements to manage my health. PN is my only problem, but it dominates my ability to sleep at night, and now is an annoyance during the day.
Hello, I have had non diabetes peripheral neuropathy for ten years. It gets worse each year. Painful spikes in my feet toes and calf’s. Extreme itching top of my feet, ankles. Very few treatments work. On pregabalin 150 milligrams twice daily, fluocinine steroid cream, my understanding is that it gets worse and nothing to reverse damage. Avoid sugar & white flour.
You've had it for ten years? Didn't the doctor find the underlying cause in the beginning?
Doesn't sound very encouraging for the rest of us. I have physical therapy, and also will check about electrical nerve stimulation. Also walking three days a week will increase blood flow.
I'm not giving up yet.
Hello @user_ch98d0b5c -- I read from your earlier post that you do not know what the cause is for your peripheral neuropathy. I also have idiopathic small fiber peripheral neuropathy. They suspect hereditary but don't know. You also mentioned you have an upcoming appointment at John Hopkins with Dr. Hoke in September. I know it must be frustrating waiting and wanting some answers.
@user_ch98d0b5c have you found anything that helps with the pain?
I've found that I always wear socks, even at night. I mainly do this because I can't tell if my feet have been injured when I step on something walking around the house. I've found that socks made with bamboo fiber are really soft, stretchy and very easy to put on and take off. I guess they probably wouldn't help you if you can only wear flip flops. Have you tried any kind of shoe that doesn't cause you pain?
I was not sure by the title of your discussion if you were trying to locate members who do not have diabetic neuropathy or that do have diabetic neuropathy?
I do NOT have diabetes or the pain, except from my arthritis. That I control with Advil, Extra Strength Tylenol, Creams for controlling Arthritis Pain.
But the Neuropathy has advanced from feet to upper thighs with the heavy feelings, standing on sandpaper, extra sensitivity to cold, and the feel of feet and legs being asleep with no control when walking. Advice from my Primary Doctor was to see a Neurologist.
I do NOT have diabetes or the pain, except from my arthritis. That I control with Advil, Extra Strength Tylenol, Creams for controlling Arthritis Pain.
But the Neuropathy has advanced from feet to upper thighs with the heavy feelings, standing on sandpaper, extra sensitivity to cold, and the feel of feet and legs being asleep with no control when walking. Advice from my Primary Doctor was to see a Neurologist.
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I'm going to ask my pain doctor about this when I see him on the 18 th MRT.
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2 Reactions@jif2......I forgot one other important issue. In order to qualify for the co-pay coverage from the drug company I had to submit the "refusal" I received from Social Security to provide support for my low-income status.
I know....it's a lot of work but worth it.
Chris
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1 ReactionHi there all. My PN is a result of inflammation of my arteries. The blood flow is diminished and the large nerves are affected.
I’ve tried Lyrica, and the rest. I couldn’t take anything without falling asleep.
For me, I use lidocaine lotion when things get bad otherwise I just wait it out…
My biggest problem with my feet is Raynaud’s disease. Now, that causes me pain! It requires me to keep my feet, and sometimes my hands warm. Ugh!
-
Like -
Helpful -
Hug
2 ReactionsI have peripheral neuropathy due to Arachnoiditis. Had a stim put in 2 years ago and now it's failing. I also have Ehlers Danlos and found out too late, I shouldn't have ever done the repeated joint injections into a bunch of my joints. So, no injections.
I also have hashimotos and since 10', no thyroid. I was rx'd the same ol' gabapentin as everyone else. I did research into gabapentin and discovered it is a thyroid inhibitor. Plus, it didn't do much for my pain.
Going back to the Dr who installed my stim. I think the leads may have moved. Does anyone have a newer stim they really like? Right now, I have the medtronic stim.
I have been diagnosed with idiopathic peripheral nephropathy with pain in my feet only at night, and sometimes up my legs as well. I have tried Gralise, which worked but my insurance company would no longer pay for this medication. I've tried Metanx as well and that also worked and my symptoms went away. Now my symptoms are back and I'm using CBD oil on my feet at night. This helped for a while, but now I am experiencing pain in my feet during the day as well. I'm at a loss at to what to try next because I have also tried Gabapentin 100 mg, and I am loathe to try a bigger dose because of serious side effects. Also, I read that the Covid 19 vaccine can exacerbate PN, and I'm wondering if that is the cause of renewed PN. Whatever the cause of the renewed pain, I'd like to find some treatment that will reduce or eliminate the pain so that I can sleep at night.
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Like -
Helpful -
Hug
1 ReactionWelcome @mkay1, Sorry to hear that you are struggling to find a treatment to relieve your neuropathy pain. I also have idiopathic small fiber PN and posted my story in another discussion here - https://connect.mayoclinic.org/comment/310341/. There are a lot of different treatments that members with neuropathy have found helpful. Learning as much as you can about your condition and what treatments may help is one of the tools in your control to help yourself. Here are a few discussions that might provide some help:
--- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
--- Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/
--- What helps the symptoms of Small Fiber Neuropathy?: https://connect.mayoclinic.org/discussion/tingling-from-small-fiber-neurapathy/.
You might also find the Foundation for Peripheral Neuropathy helpful - https://www.foundationforpn.org/living-well/.
Have you looked into any lifestyle changes to see if they might help?
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1 ReactionThank you for the referrals. I'm eager to dive into reading them. In the meantime, about lifestyle changes: I walk 30 minutes everyday on a treadmill, as well as neighborhood walks, my weight in on target for my height and age, and our meals are Mediterranean oriented. I don't take any drugs, and use a number of supplements to manage my health. PN is my only problem, but it dominates my ability to sleep at night, and now is an annoyance during the day.
-
Like -
Helpful -
Hug
3 ReactionsYou've had it for ten years? Didn't the doctor find the underlying cause in the beginning?
Doesn't sound very encouraging for the rest of us. I have physical therapy, and also will check about electrical nerve stimulation. Also walking three days a week will increase blood flow.
I'm not giving up yet.
-
Like -
Helpful -
Hug
2 ReactionsI do NOT have diabetes or the pain, except from my arthritis. That I control with Advil, Extra Strength Tylenol, Creams for controlling Arthritis Pain.
But the Neuropathy has advanced from feet to upper thighs with the heavy feelings, standing on sandpaper, extra sensitivity to cold, and the feel of feet and legs being asleep with no control when walking. Advice from my Primary Doctor was to see a Neurologist.
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Like -
Helpful -
Hug
2 ReactionsAre you planning to setup an appointment with a neurologist to see if they are able to determine a possible cause of the neuropathy symptoms?