Topical cream brings relief for PN

Posted by gastineaurower @gastineaurower, Jul 26, 2021

I have suffered from idiopathic peripheral neuropathy in my feet and legs for 20 years. I have seen neurologists in Alaska, Washington (UW) and finally Mayo. In every instance I have been stuck with pins, and given diet and exercise recommendations, with the occasional prescription of Lyrica (pre-gabalin) or oral amitriptyline — none of which did much good. On several occasions I have questioned why nothing could be done topically. UW told me that the pharmaceutical companies don't put R&D dollars into topicals because the profit margin is low. FINALLY, but ONLY in my response my question, a Mayo neurologist prescribed an ointment composed of ketamine/amitriptyline 5%/2%. It is not a cure, and it is not cheap ($100 for a month supply — my insurance will cover it) but it is the ONLY thing that will let me get a good night's sleep. BUT YOU HAVE TO ASK FOR IT.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Chris, Volunteer Mentor | @auntieoakley | Jul 26, 2021

I am curious if there are any side effects during the day from these drugs. How long have you been using it? Is it made at a compounding pharmacy? Any daytime sleepiness?

Chris Trout, Volunteer Mentor | @artscaping | Jul 26, 2021

@gastineaurower and @auntieoakley, I too, received this compound with a lidocaine basis from my neurologist. I had no side effects, no sleepiness and it worked at the time. When I moved from CA to MN, I chose to use only medical cannabis for SFN pain control. I found that a Relief Balm in two different dosage formats worked better and more "precisely". The price, however, is about the same. I am happy to be more specific if you think it would help.

May you have comfort and ease.
Chris

mad | @mad | Jul 26, 2021

In reply to @artscaping "@gastineaurower and @auntieoakley, I too, received this compound with a lidocaine basis from my neurologist. I..." + (show)

I would like more details, Thanks

Chris Trout, Volunteer Mentor | @artscaping | Jul 26, 2021

In reply to @mad "I would like more details, Thanks" + (show)

Please tell me what you want to know more about? Medical cannabis? Something else? Thanks.

Chris, Volunteer Mentor | @auntieoakley | Jul 26, 2021

I would love to hear more details about this compound. This could be really helpful. Did you get it from a compounding pharmacy or a regular pharmacy? Did you use it for a long time?

Chris Trout, Volunteer Mentor | @artscaping | Jul 26, 2021

In reply to @auntieoakley "I would love to hear more details about this compound. This could be really helpful. Did..." + (show)

Hi Chris, yes I used it for 2 or 3 years. As the SFN symptoms became more prominent, my neurologist would change the recipe with the compound pharmacist. I no longer have the jar with the recipe on it. Sorry. When I arrived in MN, there were no neurologists in my town and I was unable to find anyone who could talk to me about compounding. The small tub or jar was $75 plus shipping. For a while, I kept getting it shipped but then I no longer had the same clinician and my insurance was different so I switched to medical cannabis.

I was very lucky to have been introduced to Papa & Barkley early in my journey. They now have Releaf Balm in 1:3 CBD/THC for acute pain and 3:1 CBD/THC for chronic pain. I keep both handy. It is especially helpful with the tingles, numbness, and pain in my hands. When the barometric pressure takes a nosedive, it becomes my go-to for comfort. I have also been able to taper off some of the gabapentin and replace it with P & B for my hands and wrists in the evening when they act up a bit fiercely.

Hope this suffices for the time being. Do you have a compounding pharmacy near you?

May you have comfort and ease.
Chris

John, Volunteer Mentor | @johnbishop | Jul 27, 2021

In reply to @artscaping "Hi Chris, yes I used it for 2 or 3 years. As the SFN symptoms became..." + (show)

A few years ago there were only two compound pharmacies in Minnesota - Lake Elmo Pharmacy and Mayo Clinic. Now there are quite a few which tells me there are a lot of folks using topicals with CBD/THC and Ketamine which was what we were told was helpful for neuropathic pain at one of our MN Neuropathy Association meetings.

runnergirl | @runnergirl | Jul 27, 2021

@gastineaurower, does this topical help with other symptoms, including numbness and tingling? Thanks for telling us about it.

Chris Trout, Volunteer Mentor | @artscaping | Jul 27, 2021

In reply to @runnergirl "@gastineaurower, does this topical help with other symptoms, including numbness and tingling? Thanks for telling us..." + (show)

Yes, @runnergirl, the lidocaine compound, and the cannabis balm help with the numbness and tingling. The cannabis works better and longer regarding neuropathic pain and the sensations of tingling and numbness.

Chris