A topical ointment has been suggested for me, for foot pain -- nerve pain -- due to Guillain Barré Syndrome.

I'm wondering whether this is legit, or is it just a way to throw some money at Magic Snake Oil.

The ointment is described as

quote:

"This medication is a cream combination of three main drug ingredients; Amitriptyline 5% for never pain, Baclofen 2% as a muscle relaxer and Lidocaine 5% to address other additional pains. These ingredients are put into our cream base, which helps these drugs absorb, with the goal of addressing neuropathic pain or similar never symptoms such as burning/shooting pain, numbness, tingling or loss of feeling."

Legit?

How much is it?? Ingredients seem appropriate to try for neuropathy. Sadly nothing works very well for neuropathy. I am aware that compounding has become a profit center with little benefit to the patient. If there is minimal cost to you give it a try. As you may know neuropathy frequently occurs with diabetes so there could be a large market for this if it works.

quote:

Originally posted by ZSMICHAEL:

How much is it?

$75.00 for 75 grams, $90.00 for 150 grams.

Dosage is one gram.

I have had folks prescribed lidocaine 5 percent cream and after a month have obtained some benefit. It is by no means a huge breakthrough or anything. The price does not seem too steep.

I would try low dose gabapentin. Cheap you could start at 100mg three times a day. You could always increase as needed. Can make you sleepy so start low go slow. Works great for nerve pain.

This message has been edited. Last edited by: 1flynDO,

Is the quote for "never pain" your typo or the seller/mfr? If theirs, it sounds like snake oil.

You can buy creams with Lidocaine over the counter now. For example, Aspercreme contains 4% Lidocaine.

I second the suggestion of gapapentin. I have stated taking it, also for foot nerve pain. It is very inexpensive and with a very wide range of dosages.

quote:

Originally posted by 1flynDO:

I would try low dose gabapentin. Cheap you could start at 100mg three times a day. You could always increase as needed. Can make you sleepy so start low go slow. Works great for never pain.

Right after the GBS hit me four years ago, the neurologist (who has since fled the country) started me on Lyrica. No help, so my primary care doc switched me to Gabapentin. We varied the dosage a bit, and settled on 900 mg / day.

---

I'll try GaryBF's suggestion of Aspercreme, while deciding whether to follow up with the custom ointment. It probably couldn't hurt, and who knows, it might do the job for me.

Amitriptyline and baclofen can be sedating. If you can get the benefit of them plus the lidocaine without the systemic side effects there may be some (possibly limited) benefit from topical application. It would probably take pretty consistent use to see the results.

Worth a try. I'm an internist and periodically offer that as a treatment option but always tell patients it's one of those coin toss type of outcomes. Half find it's worth the money, the other half don't. Price is high but fairly standard. In the midwest $65 or so for a month supply is the going rate. If it works it's comparable to a nice evening out. If it doesn't work, don't refill it. Some can stretch the tub or tube out longer than a month and make it more cost effective. Not sure of your age but there used to be one formulation that Medicare would help pay for. It's been a while since I've dealt with that but the compounding pharmacy should be able to give you that information.

Hi V-Tail.
Great to see you back!
I have no additional medical advice to contribute--it's likely that oral formulations (baclofen, gabapentin, amitryptiline) might work better, but OTOH side effects e.g. drowsiness might be worse.

quote:

Originally posted by mlquin:

Not sure of your age but there used to be one formulation that Medicare would help pay for. It's been a while since I've dealt with that but the compounding pharmacy should be able to give you that information.

Age: I'm a few weeks short of my 84th birthday.

Re Medicare, the pharmacy that the podiatrist sent the prescription to, has informed me that they do not deal with insurance at all; I'm on my own to chase after that.

I'm a little annoyed at the way that this has panned out. My primary care doc referred me to a podiatrist, who spoke with me for maybe ten minutes. He (podiatrist) appears to be in bed with a pharmacy that is maybe a thousand miles away, refused to give me hard copy prescription that I could take to a local compounding pharmacy, ignored the information on the "new patient" forms wherein I stated that I have had adverse reactions to sedatives.

Even though I do not have the prescription per se, I am going to discuss this with a local pharmacist whom I trust; there is a good likelihood that I will wind up buying an OTC ointment with Lidocaine, and forego the other two active ingredients.

Not surprised they don't deal with insurance, it certainly increases the overhead for all involved. The only compounding shop we knew of that was willing to file to Medicare closed up when the pharmacist that owned it retired a couple of years ago. Worth asking your PCP if they know of any compounding pharmacies more local to you. The recipes seem fairly similar for most places so there may well be one closer to you that you can work with and support.

quote:

Re Medicare, the pharmacy that the podiatrist sent the prescription to, has informed me that they do not deal with insurance at all; I'm on my own to chase after that.

If the prescription is still valid you should be able to go to a pharmacy of your choosing and ask them to get the prescription transferred to them. I assume that's valid in your state, it is valid in mine. I did that when I got pissed at Walgreens, I asked my local Costco Pharmacy to transfer my scripts from Walgreens to them. They took care of it.

Good luck to you.

Hey didja ever find you preferred pickles?

Recemtly there was a large scandal and subsequent prison sentences for compounding. In this case if did not involve 75 dollar prescriptions but ones costing much more. As a result insurance companies have become difficult with ALL compounded prescriptions. Here is the link:

https://www.justice.gov/usao-s...dollar-tricare-fraud

Curiosity led me here:

https://www.ncbi.nlm.nih.gov/books/NBK560339/

The product name would help.

quote:

Originally posted by braillediver:
Curiosity led me here:

https://www.ncbi.nlm.nih.gov/books/NBK560339/

The product name would help.

If you mean the name of the ointment V-Tail does not have one it is a special ointment prescribed by the Dr. and filled by a compounding pharmacy. The fact that the Doc doesn't want to hand the script to V-Tail is somewhat bothersome to me.

quote:

Originally posted by rsbolo:

The fact that the Doc doesn't want to hand the script to V-Tail is somewhat bothersome to me.

Absolutely. There is more, going on between me and the pharmacy that seems to be in bed with the doctor's practice, that is raising a red flag.

I think that it's premature to post details on a public forum right now, but there are things going on that just don't look right to me. I need to hold off for a bit and see how this plays out.

If the Podiatrist will not give you a hard copy of the prescription or call it into another pharmacy this is possibly a scam, especially if you have Medicare or TriCare.

These scams work by the pharmacy paying the prescriber a kickback for prescribing the medication. The pharmacy then bills your insurance (which they many times get from the prescriber) thousands of dollars for a medication that costs them pennies to make. The money you pay them is typically a co-pay but they won't call it that and they don't tell you they are billing insurance. This was really big scam with patients who had Tri-Care 4 or 5 years ago. The compounding pharmacy will shut down on move on when they sense law enforcement is onto them for fraud. The numbers I saw when the scams were at their highest level were in the range of 800 million dollars.

The medications themselves have some efficacy but they are certainly not worth what these fraudsters charge for them.

If you have a local compounding pharmacy that you know and trust, call up and ask them how much they will charge to fill this script for you. If you want to find out more information about the pharmacy itself you can go to your states Board of Pharmacy website, look them up, and see if they have disciplinary action against them. This isn't a guarantee because many times they will not have discipline as they shut down and open up somewhere else under another name.

Many of the prescribers that get sucked into these partnerships with the pharmacies don't realize that what they are doing is illegal. You might ask your podiatrist if he receives any money for sending the prescription to that pharmacy or if he has a financial interest in the pharmacy.

Here are some links to articles about these scams.

https://www.dowjones.com/scoop...-compounding-creams/

https://www.painnewsnetwork.or...ound-pain-cream-scam

https://khn.org/news/fraud-con...rug-sales-skyrocket/

Out of curiosity did the Podiatrist bring up the topic and recommend the pharmacy or did you get contacted by the pharmacy by phone or some other method out of the blue?

If you want to PM me with the name and location of the pharmacy I may be able to find some info on the net about their operations. BTW - Florida was the center of these fraud operations about 5 years ago.

quote:

Originally posted by Marc1911:

If the Podiatrist will not give you a hard copy of the prescription or call it into another pharmacy this is possibly a scam, especially if you have Medicare or TriCare.

If you have a local compounding pharmacy that you know and trust, call up and ask them how much they will charge to fill this script for you. If you want to find out more information about the pharmacy itself you can go to your states Board of Pharmacy website, look them up, and see if they have disciplinary action against them.

Many of the prescribers that get sucked into these partnerships with the pharmacies don't realize that what they are doing is illegal. You might ask your podiatrist if he receives any money for sending the prescription to that pharmacy or if he has a financial interest in the pharmacy.

Out of curiosity did the Podiatrist bring up the topic and recommend the pharmacy or did you get contacted by the pharmacy by phone or some other method out of the blue?

If you want to PM me with the name and location of the pharmacy I may be able to find some info on the net about their operations. BTW - Florida was the center of these fraud operations about 5 years ago.

Hey, Marc -- I'll address the points that you raise in the order that they appear in your post.

• I did ask for a hard copy of the Rx and was told that they use this pharmacy and the Rx would be sent to the pharmacy. The podiatrist's office had a stack of large printed cards, they gave me one, that listed the name of the pharmacy and the phone number, and the statement that I would be contacted by the pharmacy within 48 hours. There was no contact information on the card other than a phone number. I asked the girl at the podiatrist's office for either email address, FAX number, or actual mailing address, so that I could contact the pharmacy in writing since I am hearing impaired and telephone is not a good option. I was told that they had no contact information other than the phone number (if you believe that, I have a nice bridge that I will sell you). When I returned home I did a bit of internet sleuthing and found all the information.
  
  
• No TriCare, but I do have Medicare Part D Rx insurance.
  
  
• I have not used a local compounding pharmacy, but there are a few in the area. I can touch base with one of them, but I might just try an OTC product that contains Lidocaine and see how that works.
  
  
• The podiatrist specified the pharmacy. It was stronger than a recommendation; there was no other choice for me.
  
  
• No PM on this forum, but I will send the pharmacy information to you via the email address in your profile.

Something else that raises a red flag for me, there are a few compounding pharmacies in the Orlando area, where I live, and where the podiatrist is located, but the podiatrist seems to be in bed with a pharmacy that is several states away, about 700 miles.

You have mail.

More on this. I was able to find an email address for the pharmacy, I contacted them and the pharmacist replied, telling me that they do not deal with insurance. I would have to pay for the med, the pharmacy would then send me documentation and let me battle it out with my Medicare Part D insurance carrier.

I asked for the documentation up front so that I could request approval from my insurance carrier first. The pharmacist flat out refused, stating that the documentation would be provided ONLY after I had paid for the med.

The whole thing sounds fishy to me. It is certainly possible that I am being overly suspicious, but the fact that the physician refused to give me the prescription and let me take it to a pharmacy of my choosing, the physician's office claimed to have no contact information other than a phone number, this pharmacy is several states and 700 miles distant when there are several compounding pharmacies here in the Orlando area, and the "chosen" pharmacy refuses to provide documentation that is needed for me to request approval from my insurance carrier until after I pay for the medication -- all of these things add up to make me question the whole idea. Right now, my instinct tells me not to do business with this pharmacy.