Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 02-10-2007, 11:23 AM #11
daylilyfan daylilyfan is offline
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daylilyfan daylilyfan is offline
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Default cream

Michael
I use a cream that is a little bit like yours. Here is what mine is.
2% amitriptyline hydrochloride
2% bupivacaine hydrochloride (local anesthetic)
5% gabapentin (Neurontin)
5% ketaprofen (the NSAID Orudis)
10% ketamine hydrochloride
2% lidocaine
"in lipoderm base"
the "base" pharmacist uses makes ALL the difference in how the cream works. The first place I got this from had a whole line of different creams, and would not release to me the exact name of base they used. They charged $100 for a small jar (about an ounce) their cream... and my insurance would not cover it up front because it was out-of-state. They had to say what the drugs were in it though. So, once we knew it worked, my doctor wrote for a 90 day supply so I could send to my insurance's mail order compounding pharmacy.

The mail order place, where their first priority was cost savings - used an inexpensive base. This cream did not work nearly as well. In fact, it hardly worked at all. The cream was thin, watery - hard to apply. I called the pharmacy and asked to be sure that it was even the right prescription. The druggest said he had trouble mixing it and worried about it being to thin. He said he would order in a different base for my refill. So... when I ordered it again, it was thicker, a little bit greasy, but it worked a lot better. Still it was not nearly the strength of pain relief as the very first little jar I got from the expensive place.

Then, my employer changed insurance carriers. Their mail order pharmacy did compounding but did not use ketamine. Now I had to try to find a new compounding pharmacy that would do something with ketamine. FINALLY found one. I talked to the pharmacist, and he said he had made up a cream for his uncle who had terrible shingles, used several bases till he found one that allowed the medications to "glide through the skin" taking the medication right through the skin layers to the nerves. He said the less expensive bases do not allow for the medications to glide through the skin as easily. He took the time to look up RSD (website I gave him) and called me back the next day. I thought that was GREAT!! That way, he knew what I had, and needed it for. Now he understood for RSD, you need the medication to go deep into the tissue to get to the nerves - unlike a base you would use for a dermatology reason, where you would want the base to let the medication stay on the skin surface to treat acne for example. Like his uncle did for his shingles. He thought he knew just what I would need - but would need to order it. Did I mind waiting a couple extra days? Not a problem!! I would gladly wait a couple extra days!

When I got the cream from this pharmacist - I was amazed at the difference. It worked really well.

Then, my RSD ramped up a few notches - spread all the way down my back. I talked it over with my doctor and we increased the ketamine from 5% to 10% (like in the script I gave above). WOW what a difference. It still does not make my pain "GONE" like yours does Michael... I wish it did... as I do not take any pain meds and wish something would make the pain gone!! But, this cream does take a great deal of the edge off.

I have noticed that this stronger cream does make my tongue numb and I feel a bit woozy if I put to much on my body. The first day I used it where I would normally... my entire back, shoulders, upper arms, neck and lower face, and my foot... and went off to work... a couple hours later I started feeling a bit odd and I asked a co-worker if I looked stoned, as I felt like it. The next time I used it, I just put it all over my back... didn't get the woozy stoned feeling, but my tongue did get numb. Next time I go back to the doctor, I will ask for the lower strength cream for most areas, and just get this stronger one for the worst areas.

I would hate to get a DUI because of ketamine cream. Not sure this can happen, but would hate to be denying myself pain meds because of safe driving only to get a DUI because of the cream.

Anyway, if you have tried a cream like this, and it has not worked -- try asking the pharmacist if he can try a different base for you. It may well be the answer to having it work for you. I have 4 different creams with all the exact same meds - just four different bases -- and they all work at different levels -- with one not working at all and one working really well and the other two falling in between.

Oh - and the first pharmacy that charged $100 for about an ounce? Pure GREED. Even using an expensive base, this last pharmacy charged $72 for 400grams - looks like about 3 cups. My co-pay was $20. Not bad at all.

Jules
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"Thanks for this!" says:
Jeanine V (01-23-2011)

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Old 02-11-2007, 07:09 AM #12
AnnBon AnnBon is offline
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AnnBon AnnBon is offline
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Default The greatest cream in the world

HI,

My Dr.rx for me about 4-6 months ago and it hs been a miracle for me. The chemical make-up I believe its almost the same. It works for pain unbelieveable. I had surery on some nerves in my arm, long story, if I did not have that cream during my recovery I think I would of died. Now, almost 2 months later I only use it as necessary. I get mine from a compounding center in MA, I live in th NYC area and have agreat pain Dr.

Ann
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Old 03-10-2007, 01:37 PM #13
InHisHands InHisHands is offline
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Quote:
Originally Posted by frogga View Post
i know lots of people HBOT has helped...

just not me.. (well.. it healed my skin but not the RSD).

Rxxxxxxxxxxxxxxxxx

Has it "cured" or sent any of them in remission?
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Old 03-11-2007, 08:51 PM #14
debbiehub debbiehub is offline
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debbiehub debbiehub is offline
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Default cream

Are u guys talking about a cream or a gel? I have a ketamine gel that is too sticky and hard to use

Thanks
Debbie
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