The Colon Club

My husband had his third majory surgery for blocked groin arteries. He ended up with severe neuropathy...snd I mean severe. Unable to work...basically unable to walk. Pain sitting at 9/10 all day....every day. I know many of you can relate. We tried everything....then this week family doc gave him a script for a creme that had to be specially made. IT WORKS! Pain is at about a 3....very doable. He is walking and actually talking about going back to work in a couple of weeks. 48 hours ago he was looking at applying for perm disability.

If you are interested it is a blend of liquid amitriptyline, ketoprofen and lidocaine. Pain and burning in foot toes and shin reduced by about 75%. It is a lifesaver. Please ask your doc if this is an option for you if you are suffering from this horrible condition. It may not cure you...but any reduction in pain would be welcome I'm sure.

THAT is very good news my dear friend
(I know I haven't bugged you in a while and send all my best )

this would be a topical combination of meds ?
Is he getting anything orally as well ?

great combo BTW !

Cheers and Harmony
CRguy

I'm glad the medication is helping!

So glad that they found something that works for your husband!

Thank you for sharing as well, hopefully it helps others too.

Prayers to you and your husband.

CRguy wrote:this would be a topical combination of meds ?
Is he getting anything orally as well ?

I'm curious about that too + how many x's a day application?

When I think back to my DH suffering so w/neuropathy ...well I try not to go there, but definitely glad to hear there may be something out there. Great news for your DH.

Best Wishes
BS

There are so few meaningful options for finding relief with peripheral neuropathy . . . the pain can be heartbreaking to watch in someone you love.

My mother has neuropathy in one foot following peroneal nerve damage during total knee replacement surgery. She gets some relief with oral gabapentin. My mother is going to contact her MD to get a prescription for a compounding pharmacist. Fingers and toes crossed that the "recipe" is helpful in calming the nerve pain.

Thank You, Tammylane, for sharing this hopeful information. People helping people. That's what good forums do.
- Karen -

My husband has been on HIGH doses of gabepentin and amitrptyline, and it did nothing for the neuropathy. He was in constant pain - at least a 7 and that was if he was laying still. Walking took it to a 9, and bedtime was a nightmare. Also, due to the high dosing of the oral meds...he couldn't function, slept 16 - 18 hours a day and sometimes just forming meaningful sentences was a challenge. He was also on Percocet in addition for the pain....didn't touch it so he stopped taking them. No point.

Our doc is weaning him off of the 2 meds and replacing with a "regular" dosage of Lyrica (pregabalin), although at this point we are not too concerned about it working as the results from the creme are outstanding. The change of meds was due to concern about long term use of the drugs and his heart ( he has some issues).

He puts the creme on 4 times a day, although yesterday it was 3 times....amazing. The creme was not cheap...$117 for what is maybe a months supply, but considering he could barely even walk a week ago...we are good with that. I am hoping most or all of it will be covered under my drug plan but because it was a custom mix, I had to submit everything manually so I won't know for a week or so...but again...we are fine with paying it because he can work again...versus being on disability which is where this was heading...He has replaced all of his footware as well...he has found going to extra wide shoes has made a difference and I bought him the diabetic socks,,,,again helps as well. He started taking high doses of cayenne pepper,,,,research said this can be a wonder supplement for many things, so we figured since it is not a drug...why not....it is the creme though that gives him immediate and long lasting results.

I am hoping anyone reading this that takes it to their doctor has the results we have had...and I am hoping they will at least let you try it. Everyone is different, it it might work for some and not others...but for those of you that it helps...it could be a game changer.

Also...I should add that the neuropathy for my husband was because of surgery and nerves being severed which I was told (true or not I don't know) but this can be the hardest type to get results for due to the nature of the cause...so MAYBE chemo induced has an ever better chance for good results?? I don't know, but I wish nothing but great things for those of you that suffer from this, it really is a nasty thing to deal with...

Gentle hugs to everyone!!

Hi Tammy,

Thank you for sharing this with us. Apologies if this is stupid question-but where does your husband apply the creme? Directky on the affected area?

My Mum was left with awful neuropathy in her feet and hands...

Thank you
Veronica

Yes...he applies a small amount to his toes, arch, heel and shin. Not much is needed. He does it first thing in the am, afternoon, suppertime and before bed. Yesterday he actually went from doing it around 9 and not again until suppertime....we were amazed as he was actually fairly active as well. Today it has been about 4 hours so far and his foot is feeling good...sitting at about a 1 - 2 and he has been VERY active. The only trouble spot is his arch...it keeps him at the 1 - 2, all other pain disappears. He would be happy with anything under say 3 - 4....so this is AWESOME!!!!!!!

Hi Tammy, I wonder if you can see on the Rx or the lable the proportion of each drug in the mix? I have the same thing as your husband has, but on my scapula, shoulder and arm - 8-9 when I get up and about 3 when I am in bed, it has not leaved me for 4 mo already, unbearable... oxycodone and hydromorphin take it down to 5-6, but not more... I would check if Ecuadorian pharmacy can make such a mix, but the percentage is needed... I first thought it is my neuralgia, but after 4 mo it does not look like that anymore, the character of pain changed....
Thanks much in advance. Vilca

Hi Tammy.
I have pretty severe neuropathy in both feet, so am definitely going to ask the docs about this. Can I ask you - you mentioned your hubby had a hard time sleeping. Was he having a lot of foot cramping along with the pain? I have had a steady increase of foot and leg cramps that affect me pretty much all night every night, and have taken to pressing my feet against pillows at night to "flex" them so that they can't cramp up as badly. Wondering whether other neuropathy sufferers have this, and whether this treatment might also help with that. Just curious.

Thanks for sharing this info!
--Tracy

Thanks for the info. I might consider it. Since chemo, my feet have always felt like I was walking on rocks anytime I went barefooted, so I always wore shoes. In the last few weeks, I notice the ball of my feet are hurting. Not sure why butt do wonder if it neuropathy kicking in. It's that or old age kicking in .

Anyway, thanks for the info,

Lee

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.

TammyLyne:
I noticed that Vilca has recently asked the question that I have as well . . . can you look at the compounding formulation for each of the three ingredients. That is, what amount of each is used in the "recipe" for making the neuropathy creme so that my mother's MD can write an equivalent prescription as to what your husband is using. Does the neuropathy creme go by any name (like the compounding for oral thrush rinse uses the name "Magic Mouthwash").

You've certainly found a good amount of interest in your thread by people hurting with neuropathy looking for a measure of relief.
- Karen -

tammylane wrote:If you are interested it is a blend of liquid amitriptyline, ketoprofen and lidocaine

the quick hit will be the lidocaine and a GOOD transdermal formulation (PLO ? )... IMO ! to enhance absorption and local/blood levels ASAP
I've used these a lot, especially for cats ... who HATE to take pills and their owners who hate giving cats pills ..... even MORE !

the secret for the amitriptyline is maintaining blood levels ( also true of gabapentin, amantidine and pregabalin ) as it is more a "neuropathic" medication as opposed to an opioid analgesic or NSAID

we take the latter for pain right here right now and they are CNS and receptor based
the neuropathics are acting more at the nerve root / local reflex / spinal pathway level

which is why multimodal analgesia is almost ALWAYS more effective than single mode therapy ... NOT JMO !
They are the only things which can address allodynia and some "wind-up" phenomena where things which "should" only cause a little pain reaction can cause catastrophic escalations of pain responses in some patients.

GLAD you have a doc who is willing to go "beyond" and keep tweaking things until the problem is SOLVED.

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