Qutenza?

[J-Bo]

Has anyone tried Qutenza for nerve pain? I found it looking in the NIH site, but I can't really find any information on its efficacy, at least not in a form that I understand.

It's a patch that has a very high concentration of capsaicin, and it's basically supposed to knock out the sensation in the nerves that are sending pain signals.

I asked my pain management doc about it, and she said she's never prescribed it before, but she would for me. That's not good enough--I want to hear from someone who's actually experienced it. From what I can tell, it causes intense burning pain (the same thing I'm trying to get relief from) for 1-5 days after application, so you have to treat that with pain meds until that initial pain subsides. And then it's supposed to give pain relief for up to 12 weeks for one application.

I'm a little nervous that the initial pain it causes might be really bad, and that they won't treat me adequately for that.

Also, can someone tell me if they're wondering the same thing I am: if the pain is coming from lesions on my spine or brain, how can treating the nerves locally help? Any thoughts?

[JerryD]

Hi J-Bo,
Can't say that I have heard of that drug. I take baclofen for spasticity ( and pain, I guess ). I couldn't help but respond to a fellow PPMSer and fellow Pennsylvanian.
You know as well as me that we are simply lab rats that the docs prescribe 2 aspirins and a band-aid. Go home and they collect $500.00 Good luck

[Kimba22]

Hi J-Bo,

I have heard of capsaicin before, but not Qutenza. I would also be apprehensive trying Qutenza and wondering how much more pain it would cause before things improved. Depending on how badly you are being affected, maybe it's worth trying for the extended pain relief? I read reports that said there was a 30 - 50% reduction in pain for some patients after using the highly concentrated patch. For me, I'd also be concerned how the capasain would affect my body's thermostat, because I'm so heat intolerant. Quite honestly, I don't think I would try the highly concentrated version, maybe just the weaker lotions (which, of course, aren't as effective ).

I found this and maybe it will also help to answer your other questions:

"The bilateral nature of dysesthetic pain points to a lesion in the spinal cord. Although dysesthetic pain is often of moderate intensity, its nagging, persistent nature affects function and quality of life. It is typically unresponsive to standard analgesia, worse at night and aggravated by physical activity and changes in temperature.

Dysesthetic pain is difficult to treat fully. Mechanism based strategies include neuromodulation and interruption of pain pathways.

Topical agents including S-ketamine ointment, capsaicin, lidocaine patch (Lidoderm) or 5% ointment are well tolerated and effective for neuropathic pain (IASP, 2010). Capsaicin 0.075% and capsaicin patches 8% have a burning effect that desensitizes nerve axons and inhibits the transmission of pain. Topical agents are mostly used for allodynia and burning pain. Side effects include site reactions of initial pain, redness, edema, itching and elevations in blood pressure. Patches should be applied for 30–60 minutes." http://www.nationalmssociety.org/......aloni-Pain.pdf

Keep us posted whether or not you try it. Good luck!

[J-Bo]

I'm pretty much leaning toward no. I have tried an OTC lotion with capsaicin before, and it did burn way too much for me to continue with it, so this would probably be much too horrible to even consider. I just wanted to see if anyone had first-hand experience with it.

I've been through so many different meds, topical concoctions, acupuncture, TENS unit, and even a spinal chord stimulator, and still haven'd found an answer. I have been considering an intrathecal pain pump at this point, but it seems like such a radical solution that I just sort of latched on to this in desperation. Trust me, if you've heard of something, or even if you haven't, I've tried it, possibly more than once.

But again, it doesn't make any sense to me that if the problem is higher up in the spine or brain, applying something to my feet would help. I've tried the both Lidocaine patches and lotion, and neither did a thing, so this probably wouldn't either.

Anyway, I'm pretty sure I don't want to try this idea. And can you believe that a two-patch pack costs over $1000? Oh wait, you guys are MSers...of course you can believe it. But really, that much for something's that probably just the synthetic version of soaking in a tub of Tabasco sauce?

But thanks JerryD and Kimba. If I find anything that does help, I'll let you know.