Qutenza capsaicin 8% for CRPS pain
 

My Pain Specialist at USC just recommended I try Qutenza. Apparently it is used for neurological pain related to Shingles and peripheral neuropathy. It sounds quite painful though.
Has anyone heard anything about it or tried it for CRPS? He said it would be the first time he has ever used if for CRPS and I am worried about being the first person to do this in case it makes me worse.

Hi,

I have heard of it and was just talking to my doctor about it this week. Wow, small world. Anyway, it was first recommended to me in 2007 my Dr. Schwartzman during a ketamine booster because I wasn't getting complete relieve from the letamine. I never tried it honestly he kind of scared me and I quote him, "It burns like hell". So that was enough for me. I never tried it. But I have heard it works pretty well for very localized area's. That is the one problem I can't get rid of. I have pain left in one area that still gives me problems to this day. It's a relatively small area but it keeps the arm swollen which makes the RSD Flare, it's just a vicious cycle. They also feel that the area that I still have problems with is a periheral Neuropathy issue.

Goold Luck. Keep us posted.

Gabbycakes

It burns? I remember when my wife let her doctor rub a menthol numbing kind of rub on her bad limb and that was the end of that!

I saw a post on another board about this recently and the user said it took three weeks to get used to it. That is a LONG time to stick with it if it burns.

I have my doubts about this patch.

It is ferociously expensive. And many people need lidocaine applied before use to take down the pain. The patch is applied in the doctor's office for a short time, an hour or so only.

There have been very few people in the last decade I have been posting on Peripheral Neuropathy boards, who can stand capsacsin! I myself find it agony! I would never try a many hundreds of dollars patch of it!

Hello All,
If I think this is what I used years ago then I remember it well or maybe it is some type of what I used years ago?? Capsaicin is hot peppers. I remember the directions saying to not get the gel in the patch on your hands or eyes because it will burn like heck. I don't remember it working well BUT I DO REMEMBER applying the patch (as well as other times a Lidocaine patch) and neither worked well on my foot (site of initial trauma). Putting the patch on my foot was ok and felt uncomfortable until I got used to having something on my foot BUT the absolute worst part was the next day (or hours later) when I had to take off the patch. OMG! The pain brought tears to my eyes so just remember if you put any type of patch on you have to take it back off and the pain is horrible. I hope it works well for you. Best of luck. Let us know how it works for you.
kathy d

I was pretty skeptical after reading about it, but now after hearing from some of you, I really don't think I want to try it. It sounded kind of crazy to me that I would put something on my RSD limb that would make the pain worse and that later on I would feel better. I even flare up when I get blood drawn so I cant imagine doing this. If I do try it I will definitely let you know! Thanks for everyone's insight!

I tried capsaicin once - just once - when one of the docs on my peripheral nerve team suggested it. He said up front that he wasn't sure how it would work and that if it did, it might take awhile.

Almost immediately upon putting it on, it made the usual fire feel lukewarm. It was absolutely horrific, and trying to rinse it, etc. didn't even come close to helping. I had to let it wear off.

I'd love to know if it actually works. Unfortunately, it's just not for me.

I tried over the counter capsaicin once myself, but it didn't have any affect on my CRPS pain, so discontinued it after about 2 weeks.

treatment this week
 

Greetings I am actually having the treatment done this week for the first time at my pain specialists office. I thank God as being a medicare pt. and medicare will not pay for it because it is so darn expensive, that my pain Dr told the rep listen she is going to be like the test subject and because of that you should provide the treatment materials free of charge...well guess what? They agreed. It is a treatment that has been used on those with shingles, and has provided them with up to 3 months of relief, I understand the risks, and just like everything else there are risks what one person experiences may not be what another does, ie ketamine infusions some have had great results while i have seen someone that has been in a wheelchair now for over a year and was in the hospital for 4 weeks after the first treatment. I have a scs that some swear by but each time i use it my pain levels go even higher if that was even possible. so time will tell, i just am praying for great things, not just for me but for all of us!!!!! :grouphug: Ann