Alan's podiatrist gave him a compound cream
 

I'm not sure if it's a cream or an ointment. I made a video so I could show you and I list the ingredients.

Here is what it is

http://www.youtube.com/watch?v=lLrmnZmW6RY

He's trying it out tonight. He's never had a compound anything before so we shall see.

Will update.

Melody

Please let me know how it works. I have a neuro appt next week.
Thanks!

I don't understand the clonidine in it. This is typically only used in RSD patients.

Does Alan take blood pressure pills? The clonidine may be absorbed enough to affect blood pressure in some patients.

Most of the formulas I saw didn't have this many ingredients.
Not all patients need all the ones listed on that label.

For pain, it would be ketamine, an NSAID, maybe gabapentin, and maybe a TCA. Baclofen is only for spasms...does Alan have spasms?

HI Hopeful and Mrs D.

Mrs. D, I read your post to Alan. He didn't understand the word spasm. I showed him when the toes curl and he said "Oh I always have that". So he has spasms obviously. Then I told him about the blood pressure connection. He takes metoprolol.

I asked him if this compound has helped him and he said "Yup, I do notice some improvement'

He is now going to run this by Dr. Fred the next time he sees him. But so far, no negative side effects.

Will continue to update.

Melody

My podiatrist gave my husband a compound cream that has similar ingredients. He has been using it and he says its helping his feet. He is waiting for the order to come which the doctor's office took care of submitting. I'm dying to see how this works regarding the prescription.

I'm curious. If this works for my husband and the podiatrist writes us a prescription, is this considered a generic product. We can really use the break if this is covered under generic. I have to go and ask the pharmacy tomorrow. I once asked them if they were a compound pharmacy and they said yes, so that's good. We've been going to this pharmacy for 20 years.

Melody

Billing compounded products can be difficult. Some computer systems do simple ones. But it is my experience that most compounding pharmacies may make you pay cash up front, and then
give you receipts, and then you submit to your insurance program for reimbursment. This is because the software often does not have programming for detailing the list of ingredients.
Some insurances don't want to pay for ketamine for example since transdermal application is not FDA approved. Right now compounding pharmacies are under investigation for making products with no data to support safety and efficacy. So if your insurance requires this data, you may have to pay out of pocket.
The only way to know for sure is to contact them about eligibility.

This is what I'm fearful of but the doctor said our insurance would cover it, so I'm trying to have faith in him and feel like he knows what he's talking about, but when insurance is involved, it seems any excuse they can find, they'll use to not cover something.

The compounding pharmacies around me all make the patients pay cash up front.

Then you submit the bill yourself manually to get reimbursed.
But I just saw a post on RSD where our member said his insurance just started declining Ketamine.

All the many insurances have different rules. And compounds may not go thru on computer billing at point of sale like other RX things. Best to find out before you get there. Compounded creams are very expensive.

I heard from the pharmacy which is filling my DH's order for the compound cream. They said we have a $15 copay which is standard for our insurance and they are shipping the cream with a bill enclosed for the copay only so this sounds encouraging. They are out of state for us and they are shipping UPS. I'm so glad that the Doctor did know what he was talking about. This is good news for us and that copay is a generic copay, FWIW.

Now that is GOOD news.

I asked Alan if the cream is helping him. Because he had the other little container of Lidocaine on his table near where he watches tv, he forgets to ask me for the Compound cream which is kept in the refrigerator. I asked him last night. "Is the new cream helping you?" and he said "oh, that's right, I have to keep using that'.

Men!!!

lol

Melody

Men, LOL is right. I realized that I should have posted that my DH doesn't have PN, he just has pain from aging(wear and tear) and he gets it from being on his feet. When he is off of his feet, the pain gets better. So, he isn't the best gauge as to the results for someone with PN, but he is really impressed with how it makes his feet feel. Let me know how your RX goes for this stuff. If all else fails, I can PM you the name of this pharmacy and you can see if they can fill his Rx for it and bill your insurance.

Our HMO doesn't work like that. We have to bring the prescription to the pharmacy and they phone up the insurance company and if it goes through, then we'll either have a generic co-pay (right now, that's zero), or it will be tier one or one of the other tiers, and that would be a co-pay of over $40. Alan would never go for that.

He just put some on about 30 minutes ago. I just asked him and he said "I wouldn't pay a co-pay for this, I'd go back to lidocaine because it does the same thing". So for Alan, this is no miracle cream.

Oh well, at least we gave it a shot.

Melody

And here is something VERY interesting. Alan does not have the same body temp that normal human beings have. When I'm freezing, he's a hot tamale. I can't even put my hands on his chest because he would say "Get away from me, you'll shock me". Right now, it's 43 degrees in NYC. The heat is not coming up. But I'm comfortable at the computer. I do not have a sweater on and I just checked the temp by the thermostat and it reads 66 degrees in my living room.

ALAN JUST PUT ON THE FAN.

Good grief. And in the morning, when I go out for breakfast and meet up with the regulars who go there, there are several men who do not own coats or jackets. They get out of their cars (it could be 20 degrees outside) and then they will just walk in for breakfast. One guy, his name is Caspar, and I asked him the other day "What did you do during the freak snowstorm that we had on Saturday? (It reached 36 degrees last Saturday and there are 1000s of people still with no power at all.

What was his answer? "Oh, I went out to dinner with my wife, I loved it" I said "what did you wear?" He said 'Just my shirt, you know I don't own a coat" He drove his wife crazy when he took the radiator out of their bedroom. I touched his arm and he's warm as anything. Just like my husband. But Alan does wear a coat outside. He just never gets cold.

And the guy who came to fix the boiler yesterday came up to my apartment and he had no coat and I said 'Another guy who doesn't wear coats" and he laughed and said 'I"m never cold"

So would someone PLEASE explain to me how these men can not own a coat or a jacket, go out when it's 20 degrees and not feel anything.?

And last week during the early morning, when I had my WINTER COAT ON and the hood and everything, I passed a big guy (over 6 feet and let's just say well insulated) and he was briskly walking in just a t shirt and I looked at him (a complete stranger mind you) and I said "Tell me you're not cold" and he laughed and said "Oh everybody asks me that, I'm never cold" I said "Never?? it's 40 degrees right now, how is this possible, aren't you freezing?" and he said "This is BEAUTIFUL WEATHER.

Someone please explain this to me because I DO NOT LIKE THE COLD and these guys could live in Alaska!!!

I just don't get it.

There is some evidence--
 

--that, on average, men have a higher overall metabolic rate (all other things being equal) than women due to a higher muscle-to-fat ratio, and so produce more heat from equivalent activity than women do.

Larger mass alone helps to retain heat, and a larger number of small blood vessels to support that mass also helps (provided there are no major circulatory diseases).

I too seldom get cold, but I find I can overheat easily in warm weather. It's one reason I could never adjust to living in a tropical climate with no seasonal changes.

Since most people's metabolic rate slows with age, their heat tolerance increases with it and their cold tolerance decreases, which is the foundation for the joke that after you reach age 65, the law says you must move to Florida. But even then, men tend to be more tolerant of cold.

There are exceptions, of course--plenty of "cold" men and "warm" women, but I'm speaking on average.

And now, thanks to Glenn's eloquent explanation, I NOW KNOW WHY I'M MARRIED TO A HOT TAMALE!!!!! lol

Thanks much Glenn

Melody