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!

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!!!!! Ann

Hi Ann,

Good Luck. Please let us know how it went and how your are feeling.

Gabbycakes

Hello everyone:

I am trying the patch this Friday. I have CRPS in my right leg and foot, and some type of neuropathy in my neck/upper extremities. I will probably just try my neck to start with, since I am nervous to try Qutenza on my CRPS limb without a block. My doctor did not suggest a block but I think I will request one after reading people's comments.

My question is, for those of you who felt a benefit, did the patch only relieve the burning pain? I also have aching/soreness and tingling, especially with my neck.

Thank you!

Hi Ann,

That is great that you were able to get the patch at no charge. I know all of us struggle with finances and any doctor willing to make that burden a little less is one of a kind.
Please let us know how it goes! We are all looking for new treatments that are effective.

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