advertisement
Reply
 
Thread Tools Display Modes
Old 11-02-2011, 02:40 PM #1
bent98 bent98 is offline
Member
 
Join Date: Oct 2011
Posts: 170
10 yr Member
bent98 bent98 is offline
Member
 
Join Date: Oct 2011
Posts: 170
10 yr Member
Default Qutenza for burning pain, Anyone try?

My situation is I have burning in my upper back, lower neck, triceps, shoulder blades. I have a herniation in my t6-7 thoracic area but 2 epidurals did very little, and dr.s are saying T-6 nerve compression would not radiate upwards. My skin feels like sunburn and very hypersensitive. I have gotten EMG and blood tests and everything is normal. I have some type of Nueropathy but not clear on the cause. I am left with the pain I have every day.

Full story in this thread: http://neurotalk.psychcentral.com/thread159222.html

My pain mangement doctor mentioned it was ment for people who get shingles but he had some success with RSD patients using Qutenza. Its Capascian but a high 8% dose. You may ask why the heck would you use a super high dose of chillipepper cream on your back if its already burning and sensitive to the touch. It's like pouring lighter fluid on a fire. He told me it directly works on the skin pain receptors and kind of resets them or burns the crap out of them. It lasts 3 months and then pain can come back.

http://www.qutenza.com/about/howQutenzaWorks.php

I have a large area so i would have to get many applications. They numb your back first and then apply the stuff. It tales like 4 hours for the whole thing and you can be in more pain for a few days afterwards.

I am dying to know if anyone has tried this. I know there are others on this forum who have sunburn like nerve pain on their skin,
bent98 is offline   Reply With QuoteReply With Quote

advertisement
Old 11-02-2011, 03:22 PM #2
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb

We've had discussions, but no one has tried it here yet that I know of. Some questions tho.

You can search Qutenza, and capsaicin and find posts.

Most of us cannot stand capsaicin but I believe I've seen a post here and there about it for the tough ones who can survive the burning.

This patch does not burn out nerve endings. It blocks substance P which nerves use in pain signal transmission. It is also very very expensive. It does not cure, and when it stops blocking substance P, the problem may still be there and the pain may return.

Let us know how it goes, if you try it. I personally don't like capsaicin products. I imagine there will be heavy push by drug salespeople to doctors. Some insurances will not approve and pay for a new expensive drug when FDA only approved for shingles pain.
There are some insurances still today that will not pay for Lidoderm patches without a prior diagnosis of shingles. So make sure you investigate the payment plan.

If your doctor thinks you have postherpetic neuralgia, I'd ask to try Valtrex first, as it may help even when there are no blisters/lesions.

This fairly recent article is not favorable to this new patch either:
http://www.sciencedaily.com/releases...0902121057.htm
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
Old 11-02-2011, 03:43 PM #3
bent98 bent98 is offline
Member
 
Join Date: Oct 2011
Posts: 170
10 yr Member
bent98 bent98 is offline
Member
 
Join Date: Oct 2011
Posts: 170
10 yr Member
Default

Quote:
Originally Posted by mrsD View Post
We've had discussions, but no one has tried it here yet that I know of. Some questions tho.

You can search Qutenza, and capsaicin and find posts.

Most of us cannot stand capsaicin but I believe I've seen a post here and there about it for the tough ones who can survive the burning.

This patch does not burn out nerve endings. It blocks substance P which nerves use in pain signal transmission. It is also very very expensive. It does not cure, and when it stops blocking substance P, the problem may still be there and the pain may return.

Let us know how it goes, if you try it. I personally don't like capsaicin products. I imagine there will be heavy push by drug salespeople to doctors. Some insurances will not approve and pay for a new expensive drug when FDA only approved for shingles pain.
There are some insurances still today that will not pay for Lidoderm patches without a prior diagnosis of shingles. So make sure you investigate the payment plan.

If your doctor thinks you have postherpetic neuralgia, I'd ask to try Valtrex first, as it may help even when there are no blisters/lesions.

This fairly recent article is not favorable to this new patch either:
http://www.sciencedaily.com/releases...0902121057.htm
They dont think I have postherpetic neuralgia sine I didnt have shingles. No one knows what I have. It all really makes no sense.
What everyone agree's on is that its nerve related.
Is the cause a pinched nerve or some type of idopathic nerve skin hypersensitiy who knows. I am desperate. I am getting a EPI in my c5-6 tommorrow to see if it helps. IF not, I have no choice but to up the gabapentin. I am currently take 1200mg.
I am at a loose.

I will continue with vitamins and ALA but not sure what else to do as my symptoms dont seem to match people with others.
bent98 is offline   Reply With QuoteReply With Quote
Old 11-03-2011, 05:38 AM #4
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb

If you had chicken pox in the past, you have Herpes Zoster living in your nerves today.

What causes them to activate is mysterious, and may be due to dietary factors (too much arginine) or some stressor.

It is certainly possible to have nerve pain due to Herpes Zoster and not have the blistering rash. Some doctors don't understand this. But if you have blood work done to show titres, they may be elevated for this virus.

I only had a small cluster of blisters with my shingles. Since then I have pain in that arm now and then.
Hubby had huge crops of blisters with his shingles on his trunk, and he only gets pain rarely...mostly in spring. He developed shingles after a hornet sting. He also had them in one ear, which was very painful. The sting was on his forearm.

If the virus is in your ganglia, you always have it. Everyone is different and can express it in a unique fashion.

I have some skepticism about jumping on another new medical intervention, without knowing the outcome. There is so much doctor caused grief with medicine today, it may pay to be careful.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
Old 11-03-2011, 07:36 AM #5
bent98 bent98 is offline
Member
 
Join Date: Oct 2011
Posts: 170
10 yr Member
bent98 bent98 is offline
Member
 
Join Date: Oct 2011
Posts: 170
10 yr Member
Default

Quote:
Originally Posted by mrsD View Post
If you had chicken pox in the past, you have Herpes Zoster living in your nerves today.

What causes them to activate is mysterious, and may be due to dietary factors (too much arginine) or some stressor.

It is certainly possible to have nerve pain due to Herpes Zoster and not have the blistering rash. Some doctors don't understand this. But if you have blood work done to show titres, they may be elevated for this virus.

I only had a small cluster of blisters with my shingles. Since then I have pain in that arm now and then.
Hubby had huge crops of blisters with his shingles on his trunk, and he only gets pain rarely...mostly in spring. He developed shingles after a hornet sting. He also had them in one ear, which was very painful. The sting was on his forearm.

If the virus is in your ganglia, you always have it. Everyone is different and can express it in a unique fashion.

I have some skepticism about jumping on another new medical intervention, without knowing the outcome. There is so much doctor caused grief with medicine today, it may pay to be careful.

I did have chicken pox when I was eight and have Epstien Barr when I was 25. Thing is, my burning is bilateral and Herpes Zoster doesnt present itself that way.
bent98 is offline   Reply With QuoteReply With Quote
Old 11-03-2011, 07:44 AM #6
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb

Herpes zoster can present any old way. It is just more common to be unilateral.

http://emedicine.medscape.com/article/1166373-overview

You won't know unless you get the bloodwork done.

If your titres are low, it is not likely Zoster activating.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
Old 11-03-2011, 09:14 AM #7
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb

I found a pain management forum for doctors mostly and they all said they could not get payment from insurances for this. Even BCBS! They also said the manufacturer was not helpful at all.

Several stated that they will not prescribe this. And one stated that IV anesthetics are used when this patch is applied in their facility!
Sounds pretty extreme to me!
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Qutenza capsaicin 8% for CRPS pain lovefamilypets Reflex Sympathetic Dystrophy (RSD and CRPS) 14 03-06-2013 10:05 AM
Burning Pain and Rsd lexiemae1 Reflex Sympathetic Dystrophy (RSD and CRPS) 10 03-13-2009 02:21 PM
anyone have rsd without burning pain?....... TraceyW Reflex Sympathetic Dystrophy (RSD and CRPS) 11 10-12-2008 10:59 AM
What do you take for the burning Pain fire Reflex Sympathetic Dystrophy (RSD and CRPS) 11 07-19-2008 09:36 PM
burning pain bluestone Myasthenia Gravis 7 09-28-2007 09:12 PM


All times are GMT -5. The time now is 06:55 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.