Wanted to share my husband's neuropathy med -it works!

[WriterGirl1969]

More on his symptoms:

Sheets on his toes at night made him feel like his toe nails were being ripped out.
Yes....bad bad foot cramps!
Extreme burning sensation.
Going barefoot made it worse.
Horrific feeling of being badly bruised.


We just did an experiment...he hasn't put any on since this morning....should have done so a couple of hours ago....he was sitting at about 4 -5 in pain. It took exactly 4 minutes after he applied the creme to go down to a 2/3 in the toes, ball and shin....5 minutes later it is a 1 - at most. (arch prob more like a 3)

I don't have the % of each drug, but I am going to try and get it for you. The pharmacy goes through so much of this they mix up a quart at a time, and they said most patients get wonderful results.

That's amazing, Tammy.
That line about the toe nails is EXACTLY what I go through. I can't keep my feet under even a sheet for that reason, and then they freeze all night, which sucks and makes the cramping worse. I went swimming with my son recently while at a hotel, and I told my husband that this was the longest I'd been barefoot in about 5 years. I describe the odd numbness mixed with sensitivity to people as the feeling of having stamped my feet on wet pavement for an hour. To hear it described by someone else so closely... it just brings home to me... well, how much it's a part of your life when you have it. I will *definitely* see if I can get this and try it. Almost brings tears to my eyes to think about some relief after so long.
--Tracy

[Maia]

The formulations vary but a general amount would be ketoprofen 10%, amitriptyline 2%, and lidocaine 5%, often with the addition of gabapentin 6%, all topical.
In Germany they use amitriptyline 5 and 10%, ketamine 10% and baclofen 5%

Cream with menthol as high as 8%, topical, as I posted in other thread. Sorry I can't provide the links right now but a search on Google Scholar will bring the literature for it.
Also google there
"Thinking Out of the Pillbox: The Relevance of Topiceuticals in the Treatment of Neuropathic Pain"
also ketoprofen + ketamine, Univeristé de Montréal

[WriterGirl1969]

Just as another FYI on topic in this thread :
when oral and topical meds actually do not give sufficient pain relief ... there could be a consideration for nerve/nerve root ablations by a pain/neuro specialist trained in such things, to actually "kill" the nerve causing the problem. Won't be used as a first choice and many docs won't consider it ... BUTT then they are not the ones suffering from intractable pain

Just something to keep in mind for certain situations.
Yes, I have first hand experience with this.

Harmony
CRguy

I developed my neuropathy after a botched epidural. While I know one of the possible treatments of it is a nerve block or ablation, I've also heard from some that they went that route and now they're worse off (some even in a wheelchair). That is not to say that this isn't a very viable alternative. I'm super glad you mentioned it, and I definitely think it's an option. Just a caution to be sure that you check out who would be doing it VERY carefully to make sure they're a specialist with it.
--Tracy

[Maia]

you have here some of the formulas the compounding pharmacies use. http://centraldrugsrx.com/pdf/Pain_Medi ... ter_nm.pdf

[CRguy]

I developed my neuropathy after a botched epidural. While I know one of the possible treatments of it is a nerve block or ablation, I've also heard from some that they went that route and now they're worse off (some even in a wheelchair). That is not to say that this isn't a very viable alternative. I'm super glad you mentioned it, and I definitely think it's an option. Just a caution to be sure that you check out who would be doing it VERY carefully to make sure they're a specialist with it.
--Tracy

ergo my disclaimer :
"nerve/nerve root ablations by a pain/neuro specialist trained in such things,"

ABSO effin'LUTELY !
.... BUTT local nerve and nerve root procedures are NOT epidurals or spinals ...... just so folks know
very different procedures, altho' those can also be very useful done by "specialist trained in such things,"

cheers all
CR

[CRguy]

....... also ketoprofen + ketamine, Univeristé de Montréal

Just FYI the ketamine thing is VERY useful in the right hands for the right reasons and has found huge acceptance in the vet field for MANY years, even as a CRI during very painful surgeries and in post-op recovery IV protocols. It is a potent NMDA receptor antagonist and among others has greater use in vet med than in most human situations. the problem is that ketamine = special K on the street drug scene has a bad rep

like anything else
good drug with bad street uses = regulators step in and limit its use

Harmony all
CR

[tammylayne]

Thanks Maia for posting those drug % combos. It is not on the container and my copy of the script is at work. I would think the pharmacist and doctor could also have access to those % ?

Good luck to anyone checking this out. Please let me know how you make out....

[WriterGirl1969]

.... BUTT local nerve and nerve root procedures are NOT epidurals or spinals ...... just so folks know
very different procedures, altho' those can also be very useful done by "specialist trained in such things,"
cheers all
CR

Ah - yes, sorry for that possible confusion. Can I ask what the local nerve and nerve root ablation procedure is like? Just curious in exploring since I know that at some point my own situation may become more severe than I can continue to maintain with extra wide shoes and grim determination.

[CRguy]

Just as a wiki answer .....
I have heard of alcohol (ethanol) injection
RadioFrequency Ablation
cryoablation
and trying to recall if I read about surgical laser .... ?

all depends upon which nerve/root/trunk
where / when and how it can be accessed
AND what outcomes for loss of other nerve function as a result
( i.e. you would NOT ablate the Vagus or Sciatic nerve ! BUTT you might take out a minor/regional branch of the peroneal nerve)
http://www.podiatrytoday.com/assessing- ... -fasciitis

AGAIN homies --->>>>> do NOT TRY THIS AT HOME ...

use your experts and find a well regarded SPECIALIST !

WORD

cheers
CR

[tammylayne]

Just wanted to update...my husband still going strong. Pain sits between 1 and 4. He does renovations...so on his feet all day. Saw surgeon for check up...told him he can actually use as needed...so more then 4 times a day. So far he had not needed to do that.

Anyone else trying it? Any success???

[MissMolly]

Anyone else trying it? Any success???

TammyLynn:

Yes . . . Success . . . Thank's to you and the sharing of your information on the compounding formulation.

My mother has neuropathy in her right lower leg and foot due to perineal nerve entrapment during surgery for a total knee replacement. My mother has very thin/slender legs and the tourniquet was applied with too much pressure, resulting in perineal nerve damage. The ensuring neuropathy was a blow to an otherwise successful knee replacement. Bone on bone pain from her knee was replaced with razor-sharp neuropathic pain.

The lidocaine-amitryptoline-NSAID compounded creme has been my mother's first sustained period of relief in months !

I am flustered as to why no physician ever made mention of the availability of this compounded prescription. The ineptitude of medical care boggles my mind.

A genuine and heartfelt Thank You and Merci' to you, TammyLynn, for making a concrete difference in my mother's life. My mother is adverse to taking oral medications. She does not trust Big Pharmaca. At 84 years of age and with no chronic health issues, I respect her choices and opinions. My mother was open to a topical ointment. The pain reduction was almost immediate. She is using the compounded prescription about 3 times a day on the affected areas. No adverse side effects. Only positive benefit in noticeable pain reduction. My mother is a "happy camper."
- Karen -

[WriterGirl1969]

I mentioned this at my oncology visit, but they told me the oncology pharmacy would not have these ingredients, and want me to follow up with my GP. I have a visit coming up in Feb, so that will be when I can give this another shot. I'll let you know how it goes.
--Tracy

[tammylayne]

My husband sits at about 1/2,,,,uses the cream twice a day.

Just wondering if anyone else tried it? Had any success??

(Wanted to bump it as well in case someone needing it hasn't seen this post)

[bitchslapped]

Guess I'll bump this too. Really surprised there is not much response considering the amount of neuropathy people suffer from on here.
Tammylayne...any success w/insurance coverage for this product?

BS

[tammylayne]

Our insurance covers 80%...so we pay about $18 and the jar lasts 4 - 5 weeks.

My husband had another emergency surgery a month ago and the creme has once again been a life saver. He cant imagine his life without it.

I agree that I thought more people would have found this topic of interest...but maybe they have tried it and just not commented...I hope that is the case...it really has changed my husbands life