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Clinical trial for PHN drug currently recruiting


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https://clinicaltrials.gov/ct2/show/study/NCT03094195#contacts

i think it's an older drug, but they're currently recruiting to test for PHN relief. They're focusing on Shingles, but I assume the efficacy would be the same for HSV. Gives me a little hope. Haven't had time to read through everything. Hurricane Irma is right around the corner....

Also, I read a few promising and not so promising studies on Botox for PHN. I'll leave links when I get the chance. I'm personally looking for urethral relief. Anyone here tried Botox?

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5 hours ago, LatentBloomer said:

https://clinicaltrials.gov/ct2/show/study/NCT03094195#contacts

i think it's an older drug, but they're currently recruiting to test for PHN relief. They're focusing on Shingles, but I assume the efficacy would be the same for HSV. Gives me a little hope. Haven't had time to read through everything. Hurricane Irma is right around the corner....

Also, I read a few promising and not so promising studies on Botox for PHN. I'll leave links when I get the chance. I'm personally looking for urethral relief. Anyone here tried Botox?

Hey I have read the article but I could understand the potential availability I know it has to pass phaseIII but I don't know if the pills will take years like the vaccine or it's matter of few months I am Suffering the worse nerve pain ever and really can't hang in for more time , God something should be there for me and the other sufferers or else someone tell me what's the releif please 

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I'm not sure about the timeline, but it gives me hope that researchers actually realize how debilitating PHN is. 

Have you ever tried amitriptyline? It's a tricyclic antidepressant. It also goes by the name Elavil. It's an older drug that isn't prescribed as often since the arrival SSRIs. Many people have found PHN relief by taking a low dose in the evening. I'm not entirely sure how it works, but it's worth inquiring about. There's also Gabapentin- an anti seizure drug that's prescribed off label for PHN. I have an appointment with a neurologist coming up. I plan on asking about both of those drugs and perhaps others- like the ones prescribed for people with fibromyalgia.  A few users here have recommended St. John's Wort. What have you tried so far?

I'm also going to do more research into Botox. I'm willing to try anything- even if it means enduring multiple shots in the most sensitive part of my body. 

If by chance some of your nerve pain affects the urethra- you might consider trying AZO pills. They're sold over the counter for UTI relief. They seem to numb/relax my bladder and the entire area for a few hours. I know I'm not having internal/urethral OBs because it doesn't burn when I urinate. It's definitely nerve pain.

I still haven't found anything for the rest of my body, but have heard of people using a capsaicin patch. That's another thing I plan on exploring. 

I want a vaccine (ideally a CURE- come on CRISPR!) as much as the rest of us, but for now all I can do is manage my symptoms with what's available.

Also- what the hell happened to Todd Rider and his DRACO broad spectrum antiviral?

 

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Funny thing- I just finished an episode of Father Brown- a BBC murder/mystery set in 1950s GB. One of the characters made a salve for back pain using St. John's Wort and Valerian! I don't know if it's wise to rub this stuff on our nether regions, but seems safe enough to use on other parts. My bum, lower back, and thighs are my second most painful concern. The urethra/bladder is #1. 

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8 hours ago, LatentBloomer said:

I'm not sure about the timeline, but it gives me hope that researchers actually realize how debilitating PHN is. 

Have you ever tried amitriptyline? It's a tricyclic antidepressant. It also goes by the name Elavil. It's an older drug that isn't prescribed as often since the arrival SSRIs. Many people have found PHN relief by taking a low dose in the evening. I'm not entirely sure how it works, but it's worth inquiring about. There's also Gabapentin- an anti seizure drug that's prescribed off label for PHN. I have an appointment with a neurologist coming up. I plan on asking about both of those drugs and perhaps others- like the ones prescribed for people with fibromyalgia.  A few users here have recommended St. John's Wort. What have you tried so far?

I'm also going to do more research into Botox. I'm willing to try anything- even if it means enduring multiple shots in the most sensitive part of my body. 

If by chance some of your nerve pain affects the urethra- you might consider trying AZO pills. They're sold over the counter for UTI relief. They seem to numb/relax my bladder and the entire area for a few hours. I know I'm not having internal/urethral OBs because it doesn't burn when I urinate. It's definitely nerve pain.

I still haven't found anything for the rest of my body, but have heard of people using a capsaicin patch. That's another thing I plan on exploring. 

I want a vaccine (ideally a CURE- come on CRISPR!) as much as the rest of us, but for now all I can do is manage my symptoms with what's available.

Also- what the hell happened to Todd Rider and his DRACO broad spectrum antiviral?

 

I have tried high dosage of lyrica for 3 months along with amitpiriline at night up to 50 mg and it did nothing , also I have tried the chickenpox vaccine and after 4 weeks the booster in order to reduce my neuropathy issues and it did nothing at all. Recently I have managed to get the Russian vax ( vitaherpavac) and it did nothing also. Talking about myself I have herpes for 11 years and the last 1.5 year was real hell on my nerve in several places but I don't get visible outbreak only the extreme chronic nerve pain which I am really struggling to find any answers for all of this. I also tried something called bee venom( sting) therapy by stinging up to 35 bees on several places in order to reduce the nerve pain and that was for almost 2 months and it did nothing to my pain levels. I have run out of all the options considering taking 2mg of tramadol to reduce the pain and really it does not do any noticeable improvement. So that's why I am almost giving up I will be holding for another 2 months maximum. In regards of the supplements I have tried all of them : alpha lipioc acid, ashawadnha , St. John wort and many other supplement without success. If you don't mind how long have you been infected and does your nerve pain started with the infection or after a while . Thanks 

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I contracted it on June 8th of this year. My initial symptoms were like a yeast infection that progressed to a UTI. I went to several doctors who treated me for the yeast infection (urinalysis positive) and then tried Macrobid, Azithromycin, and Bactrim & Flagyl taken at the same time. The nerve pain down my left leg started August 4th. That's what prompted the gyno to order an HSV igg test. I had no visible lesions, although no one even checked for them. I think I might occasionally get one tiny blister on my left butt cheek, but it's difficult to see. I use my iPhone to check but it's hard to focus the camera. If it is an OB- it's extremely mild. The nerve pain, particularly in my urethra, is what's driving me crazy and stresses me emotionally. 

I started acyclovir on August 9th. The UTI pain remains the same. The pain in my left leg is not as severe, but I get burning sensations, itchiness, and sore muscles that span the length of the left side of my body, from my toes to my face and ear. To be honest- the nerve pain seems to only get worse and extend farther. I often wonder if I wasn't treated early enough with the antivirals? Or if taking all those antibiotics back to back made things worse.

I'm sorry you've dealt with this for so long. The nerve drug trial gives a bit of hope. Also, Excision Biotherapeutics seems to be progressing with their gene therapy trials. I know that they've already registered for an HIV and HPV trial along with a few others. Their website claims that they plan to start HSV human trials in 2019-2020. 

https://www.excisionbio.com/pipeline

There's hope. You can message me whenever you want- you can vent about the pain. You're not alone with this. 

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I'm new what is PHN.

I'm thinking post herpes nerve pain.

After my initial breakout which was very sharp in my my vagina I started experiencing nerve pain down the back of my left thigh. It stayed mild overnight and throughout the next 24 hours. It was horrible I work security so I'm standing for several hours up to 10 hrs a day with my thigh in pain I never felt before. No one told me the details of having herpes so while I feared catching it I thought of I did I just couldn't have sex ever again and Id get an occasional outbreak. Now I'm finding that I'm constantly itchy, tingling, twitchy movements, the itching and nerve pain is even more horrible than the actually physical pain of an outbreak of concentrated pain in the genital area imo. If I wanted to itch for the rest of my life I'd just walk outside with mosquito repellent or get a yeast infection and never treat it. This is ridiculous. It's fucked up cus I got this shit cus a best friend no longer my friend was careless messing with someone I was involved with she never disclosed to us before hand. Which tells me all the partners she had she wasn't disclosing her status at all including her boyfriend she currently with when the incident happened. If I knew she had herpes I wouldn't have had the encounter we participated in with dude. It's so fucked up cus now I'm mentally fucked and physically because of this. I can't interact with my family the way I could before. I have to be extremely careful sanitizingyself and objects like o have the plague or something and I possibly gave it to my toddler because I kiss him on the lips this psychotic bitch just going around spreading heroes willynilly like it doesn't do shit. How could people even someone k used to care about have no heart like that. Like if I knew she was going around spreading herpes I wouldn't have even been friends with this bitch. Or maybe I suppressed it because she was my bestfriend idk. 

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  • 3 months later...
On 9/10/2017 at 7:38 AM, Mackie82 said:

I have tried high dosage of lyrica for 3 months along with amitpiriline at night up to 50 mg and it did nothing , also I have tried the chickenpox vaccine and after 4 weeks the booster in order to reduce my neuropathy issues and it did nothing at all. Recently I have managed to get the Russian vax ( vitaherpavac) and it did nothing also. Talking about myself I have herpes for 11 years and the last 1.5 year was real hell on my nerve in several places but I don't get visible outbreak only the extreme chronic nerve pain which I am really struggling to find any answers for all of this. I also tried something called bee venom( sting) therapy by stinging up to 35 bees on several places in order to reduce the nerve pain and that was for almost 2 months and it did nothing to my pain levels. I have run out of all the options considering taking 2mg of tramadol to reduce the pain and really it does not do any noticeable improvement. So that's why I am almost giving up I will be holding for another 2 months maximum. In regards of the supplements I have tried all of them : alpha lipioc acid, ashawadnha , St. John wort and many other supplement without success. If you don't mind how long have you been infected and does your nerve pain started with the infection or after a while . Thanks 

Hello! How many injections of Vitaherpavac did you have?

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6 hours ago, Lavania said:

Hello! How many injections of Vitaherpavac did you have?

5 injections and I have another ready 5 but i got it 4 months ago or so so I have to wait another 2 months for the booster. Thanks 

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