My Dr. just started prescribing Lidocaine gel for me a few months ago. It works like the lidocaine patch. He gave it to me to use in my vaginal area for the RSD and it does help. No mixing, just a prescription is needed.

Ada

I have the patches (hate them - they hurt going on and coming off. They also irritate just "being there"), Lidocane cream (this stuff is super cold and I have to be desperate for it because it hurts being put on) and I now have the compounded pain cream. The compounded pain cream hurts to be applied as well. I lay on the bed, face buried in a pillow and scream my own special language (trying to cut down on the cussing). It helps for a bit, but about an hour after applying, it burns something fierce. The doctors and pharmacy said that it's the lidocane in it, numbing my skin, etc. I don't get a rash from it, so I would assume they are correct. Again, it doesn't last long, but it will help me some especially if I am having a rough night and can't sleep. I also have a new patch - Clonidine. The first two days I had one on, fell off even with the "special cover". I put another one on a few days ago, and it hasn't fell off yet. I am watching the skin where the first one was at because it has raised little bumps and is a pinker color than the rest of my arm.

Dear Shelley -

Ever since I've been with Dr. Richeimer (2003) I've been using a compounded ketamine gel. The current mix is Ketamine, Gabapentine and Lidocaine (10, 5 and 5%, respectively) in an "Ogel," and works wonders. Although it's prescribed twice a day, I generally only use it at bedtime, unless my feet are really hurting and I have to put on shoes and socks to go somewhere. As such, 500 ml. lasts about two months, which is ironic because if I was using it 2/day as prescribed I would go through it in a month, and yet my insurance co. is only willing to pay for 400 ml./mo. as prescribed.

As I just Noted in Debbie's thread, I just learned a couple of months ago about the 400 ml. policy from my wife, where we are required to pay cash up front and my wife - as the named insured - gets the check months later. I will try to have the Rx changed to 400 ml./mo. and see what happens: the carrier may well lower the allowed amount to 300ml. TBD.

Also, there is an enormous discrepancy in what compounding pharmacies charge in our area. Not surprisingly, an outfit in BH is extremely expensive, whereas I highly recommend a little place that I understand may be much more convenient for you and with which you are probably already well acquainted: on 15th St. between Wilshire and Arizona, ask for Lisa.

Mike

I'm new (today) to the cream theory. I have Ramsay Hunt syndrome (X 22 years...and counting) I have been frustrated with RSD in my neck and shoulder this last year and finally got refered to a pain specialist.
I hope to hear back from someone else who has Ramsay Hunt as I have never met any one else with it.

I know this is an old post, but hopefully Shelley is still around or someone else has tried the 1st one on the list above and can give me percentages for the lido - tetra - benzo - baclo cream. I was Dx'd with RSd around mid 2003 post rt. knee surgery, and had it spread to full body following a 2004 rt knee surgery (First was a unicompartmental knee replacement, 2nd was a "revision" to remove the UNI and replace with a Total Knee at the ripe old age of 34)

Right now I am using C-Ketamine, Baclofen and Amitriptyline compounded into a cream, but it's losing it's effectivness over time and my Neuro and I are looking into different creams / gels that people have had success with. He's not an RSD "Specialist" per se, but he works with me and is willing to try anything new, which is great, and he is a close friend of Dr. Schwartzman and can call him anytime night or day. I've been treated by Dr S. since 2004, and now work through my local Neuro since he's only 20 minutes from me, and Dr. S is 3+ hrs away, but Dr. S is kept in the loop so to speak, and he calls my local Neuro when there's new things going on, or upcoming trials that may benefit me. Dr. S has been a godsend for me over the last 7 years.

Not the OP, but the combo that I used was Ketamine/Clonidine/Imipramine/Gabapentin/Lidocaine (10/0.2/3/6/5%). Unfortunately I never did get a lot of help from it.

I just started(only used once) Voltaren gel 1%. It is in the anti inflammatory category the same as Mobic or Celebrex. I do believe it helped with the swelling, but the Dr said only use it when I have to and I only used 1/2 of what it called for. I had what I thought were a couple of the side effects and I'm not anxious to go there, but days when the pain speaks pretty loud you weigh out the options.

I get a lot of relief from soaking, but it does limit your mobility.

pat e

Hi Shelley

I use a compound cream with 5% Ketamine and 5% amitryptaline. This works good for my feet and wrists just before climbing into bed. Helps with the pain I get when finally letting my entire body relax.

My PM doctor at the Mayo Clinic who specializes in RSD, ALS, etc. has ordered it for me and it is mixed at the Mayo Clinic pharmacy. If you have a prescription to be compounded but your local pharmacy doesn't do compounds you can have the RX filled at MC--they mail out for free!

This is the only mix I have used but will talk about others when I see my doc. Good luck to you,

Teresa Marie