Member
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Join Date: Oct 2006
Location: ohio
Posts: 405
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Member
Join Date: Oct 2006
Location: ohio
Posts: 405
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MomInRSD - an answer to one of your questions
You asked if the Ketamine cream helped with burning. The thread was closed, so I will answer here.
I use both Lidoderm patches and ketamine cream compound. I find both help, but I don't have a tremendous amount of burning - not like I envision many of you have - I have more what must be "cold" RSD. My burning is not much worse than a bad sunburn.
However, the cream does help lessen the pain. My problem with the cream is that it doesn't last very long. Maybe 4 hours. My elderly Mom lives with me, and she puts it on most of my back and shoulders before I go to work. It only lasts half the workday. I don't have a way to re-apply it myself, as I cannot reach the area it needs to go on.
The Lidoderm patches I apply to my upper arm. I have a lot of pain there. They do help, but it takes a couple hours before much relief. I sit at a computer at work, doing graphic design and photo touch up. I don't do a lot of typing. So I use my arm, but not a lot --- and the patches really help with keeping my arm on the keyboard. I wish I could cover my upper body with the patches, but your only allowed 3 a day, and they don't stick well on most of my back anyway. On my upper arm, my shirt sleeve helps keep them on. That is another reason the cream works --- it can be applied to areas that patches won't stick.
I have never had any problems with the cream making me "high" or affecting me in any way, and my Mom's pretty liberal with it, and covers a large area. Here is my "recipe"
2% amitriptyline hydrochloride
2% bupivacaine hydrochlorided
5% gabapentin
5% ketaprofen
10% ketamine hydrochloride
2% lidocaine
"in lipoderm base"
I looked on my container and the quantity says "400" I don't know if it's grams or what - I would say I get about 4 cups at a time. He's really good about it - says use what ever I need. I am not on daily pain meds, so that may be another reason he lets me have what ever amount of this - anything to keep me off daily narcotics. I usually get this refilled about every 4-5 months. It's terribly expensive, but my insurance covers it except for a co-pay.
When I was going to a pain doc, he wrote it as a 90 day supply, so I had to pay 3 months copay, but this doc writes it as 30 days, so I pay one copay. Problem was finding a good compounding pharmacy to fill it. I have to send for it - and they can't ship it to me in the winter, because if it freezes, it separates, and it's never the same.
Also, when I was going to the pain doc, he used 5% ketamine, but the neuro uses 10%. Made a HUGE difference in how well it works. The neuro, though, had always used just ketamine and lidocaine in his creams - and kept the other stuff in there from the pain doc's formula. Since I like this mix so well, he's started using it for his other RSD folks, and finding they like it better too.
My pain doc went out of the pain doc business, to just doing anesthesia stuff. Started going to the neuro for pain stuff, and it's been a good thing. He's been doing injections, similar to trigger point, into nerve areas across my shoulders for the last few months. It's helped some. I have a little more motion in my arm, and a little bit of improvement in my headache that I have had for more than a year. Injections are NO FUN though! He was one of the docs that diagnosed the RSD. Good guy. His use of botox in my RSD shoulder was what stopped the horrible electric shock pain I used to have.
Hope you start feeling better soon.
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