Topical cream brings relief for PN

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

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

I use a variety of topicals for the NP in my feet. Most days, I use a CBD salve (2000mg) and a THC/CBD salve (the higher the THC, the better) together. Intermittently, I use Voltaren (generic 1% diclofenac sodium) or Blue-Emu (10% Trolamine salicylate). I have found the changing up what I use seems to do a better job for me. I also take Gabapentin, but find that the topicals help a lot in keeping the pain at a manageable level for walking several miles a day.

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.

Phenytoin Cream for the Treatment of Neuropathic Pain
current clinical in recruiting status:
https://www.centerwatch.com/clinical-trials/listings/259478/phenytoin-cream-for-the-treatment-of-neuropathic-pain/

Thank you for the information. I was recently diagnosed with neuropathy from Sjogren's Syndrome, but no one told me what that means! I am assuming the symptoms I am having: 'Lightening bolt" cramps in my calf, multiple times in the same area, same leg, numbness and tingling in my feet and toes, inability to put weight on that leg without pain, aching pain even when sitting.. have accelerated to the point that I can no longer take a walk and every step is painful. I even went to the ER thinking I had a blood clot in my calf. I will ask my Rheumatologist about the "Ketamin/Amtriptyloline" cream you recommend. Does anyone else have neuropathy from Sjogren's and if so, what did you do about it?

Hi. I’m sorry you are suffering. I have similar pain and neuropathy from Sjogren’s. I have Primary Biliary Cholangitis, which caused liver cirrhosis. I had a liver transplant last August. My neuropathy symptoms, plus severe back and join pain, started in the fall. I saw a neurologist in March who thought I might have Sjogren’s, as PBC and Raynaud’s Syndrome (which I also have), are all ancillary. So, labs confirmed it. Many people with Sjogren’s do not get these “extra glandular” symptoms.

My neuropathy continues to increase, although the sharp pains have declined unless I drive for a couple hours, then the pain in my right leg shin area limits my ability to stand. I’ve always ate fairly well, but as recommended by experts and patients regarding neuropathy, as well as for Sjogren’s, I eat no longer eat refined sugar or flour, I have a low carb diet, lots of anti-inflammatory foods, some suggested supplements, and walk a lot and exercise. So, I believe this is helping. I also take 200-300 mg Gabapentin at night.

My back and joint pain is quite severe, however, so my neurologist referred me to a neuromuscular MD who I see in September.

You’ll find excellent patient advice and resources on the Connect neuropathy discussion group, so when I joined I went through all of those. There is also a Sjogren’s discussion which you might find helpful.

This is a good website -https://www.sjogrensadvocate.com/. Ankther website has some good patient discussions on Sjogren’s- https://www.smartpatients.com/. And, there area number of other websites that are helpful. John Hopkins has one of the more detailed websites on Sjogren’s neuropathy. And, there’s medical journal articles you can find by web searching.

Are you under a neurologist’s care? I didn’t get anywhere with Rheumatology Department at John Hopkins, which is the regional medical center for my area. I hope your experience with your rheumatologist is helpful, I do think they are key for long term care.

Thank you for the information. I was recently diagnosed with neuropathy from Sjogren's Syndrome, but no one told me what that means! I am assuming the symptoms I am having: 'Lightening bolt" cramps in my calf, multiple times in the same area, same leg, numbness and tingling in my feet and toes, inability to put weight on that leg without pain, aching pain even when sitting.. have accelerated to the point that I can no longer take a walk and every step is painful. I even went to the ER thinking I had a blood clot in my calf. I will ask my Rheumatologist about the "Ketamin/Amtriptyloline" cream you recommend. Does anyone else have neuropathy from Sjogren's and if so, what did you do about it?