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Barb G (Naples, Fl) on 06/17/2014
5 out of 5 stars

My PN started with 31 squamous cell cancers over a period of 3 years. Got rid of those with surgeries, radiation and scrape and burn. It stopped for a year after I took Soriatane for 4 months...had to stop that med because my hair started falling out. But no more cancers for a year. The next 7 biopsies came back as PN. I tried a lot of remedies I found in this forum. Got depressed and went to a psychiatrist who gave me amytriptoline and klonopin for the itching and depression. The next visit he said he researched PN and prescribed Valtrex as most of the PN was on major nerve lines and thought this might be a virus related to shingles. First 1000mg then 2000mgs per day the next month. Eureka! No new PNs and all the rest of the 39 I had are shrinking, drying out and turn white and peel off. Most are gone but the larger ones are white and peeling off.

I truly think this is viral. That's probably why tea tree oil helped some people.

As background...I also had MRSA from one of the squamous surgeries...and pseudemonas Aer...something after a MOHs surgery with a skin graft. One Doc gave me doxycycline IVs and I think Vancomycin for one of the infections. I noted several people online had MRSA and had one or two of these drugs. Maybe they set you up for PN...?

Another thing that helped was a chemo liquid for skin cancer called 5 FU...it only kills abnormal skin cells and helped stop the itching of PN and dried out the sores.

I recently had a painful reaction to the 5 FU on a fast growing bump. I had it biopsied and it was squamous cell cancer. This happened before I took the anti viral meds. A new dermatologist is going to try acutane next month for the prevention of any new cancers. I hope this helps someone.

Replied By Anelissa (Australia) on 08/10/2014

Thank you for recommending valtrex. I will ask my doctor to prescribe that for me, as I have been thinking it is virus related. Eliminated bacterial cause by using three different antibiotics. Virus makes total sense to me.

Replied By Anelissa (Australia) on 08/10/2014

I just want to kiss you Barb G of Naples.

I have made an appointment with my doctor tomorrow to receive a script for Valtrex. Let you know how it goes.

Replied By Samantha (Houston) on 09/03/2014

Good afternoon Anelissa, I was just wondering if you were able to meet with your doctor and have started on the Valtrex RX? Can you provide any feedback from your experience?

Replied By Anelissa (Brisbane, Australia) on 09/19/2014

Hi, I have completed 2 packs x 30 tablets,

2 x 500mg per day, and after 1 month of use, my NP has reduced by at least 60percent on upper body, and by 70percent on scalp. Continuing the script for another 14 days. Looking very promising. Cheers, Anelissa

Replied By Ng (California, US) on 10/19/2014

So apparently I went to 2 doctors that thought the bump on my elbow was psoriasis. Well it wasn't! It was prurigo nodularis. Steroids creams were ineffective after use for about 3-4 years. Finally went to a good doctor and he used a injection at the site for itch (good for about the month). Within a week...the bump became smooth/flat and it's starting to get better! Wish I knew earlier. I've also been using palmers cocoa butter...which offered amazing itch relief (even better than steroid creams! )..and I felt like it stays in the skin longer.

Replied By Valencia (Atlanta, GA) on 10/24/2014

Thank you so much for posting. I have been using a topical steroid for my Pruigo Nodularis and have developed severe skin damage -- yet another skin issue! I will talk to my doctor about Valtrex immediately. I have been taking Prednisone on and off for the last year and that provides temporary relief. As soon as I come off , I start the burning and itching again. I am also taking 150 mg of Imuran since the middle of August. I don't see any difference.

Replied By Scott (Naples, Fl) on 03/15/2015

I also have PN. It started 15 months ago and has not improved after months of mirtazapine to reduce itching and soaks followed by Triamcinalone application. You have mentioned "5 FU". I am wondering if you are referring to Efudex. Please clarify this for me. Thanks.

Replied By Mary (Naples, Fl) on 04/07/2015

Hello Barb G. I have an almost identical situation; multple MOHS and I had a Staph infection which preceeded a bad case of PM. I have tried everything my Dermatologist has recommended though I haven't tried Valtex. May I ask if the Valtrex continued to clear up the PM? I have had this for over 18 months now and will try almost anything. Thank you.

Replied By Maria (New York, US) on 04/08/2015

HELP! I Was recently finally diagnosed w PN. although Ive had it on /off for about 18 months. I went to 5 diff dermatologists who all told me I have dry itchy skin, never diagnosed me last april I went to a derm in NY known for eczema cures, he did a biopsy found nothing. I suffer from eczema/dermatitis time to time over the years so this was caused by and eczema breakout which I believe happened due to my allergies. Now I just went to another new dermatologist, who has diagnosed me with this . All he has me doing is using to diff topical steroid creams switching every two weeks and cerave cleanser and moisturizer. I've noticed an improvement but it hasn't fully gone away. I have been put on predisnone time and time again on /off which I hate. As soon as I stopped the predisnone I had a breakout w / vengeance like not other on my upper arm this time. Before my PN was only on my forearms. Now my whole upper arm is covered, and there must be at least 20 on my upper arm. The steroids are not working that well. I've decided to try cryotherapy. Hopefully it works , my derm wants me to stay on the steroids for amonth then consider light therapy. I need to be over with this.

Replied By Anelissa (Brisbane) on 07/01/2015

I've now seen how this virus can move around in deep skin tissue. Every so often one gets trapped inside a hair follicle, along with other debris. The follicle swells up like several times its size. And the area inflamed and starts itching. Only a bit of rubbing action is enough for the follicle to snap off at its base, and the follicle with the gunk in the follicle enclosed like sausage meat, does a neat spiraling upward trick, whereby the two ends of it are pointy like pins and can dig their way back deeper into the skin. With or without rubbing , it positions itself so that it can bring its ends together and thereby seal itself like a circular tube, with the virus nicely protected inside it. The surrounding skin now itches a lot and very quickly the tube circle becomes harder and harder, beginning to form a plaque. The tube gets rock hard like finger nails. It takes weeks to pick it out even tho its so near the surface. To make matters worse, the tube contains keratin and whatever else making it a sticky Slough inside the well or centre area of the circle that is the tube. Anyhow, what the alcohol does is kill the virus, and that lowers the inflammation immediately. But to get satisfaction you still scratch around the area to pull bits of the hardened tube out. In the absence of medication that destroys this virus and its fortifications, it's unfortunate that It requires a gauging action to get the hard tube out. ETIOLOGY.my perspective.(above) Next: how I have eliminated the virus from my scalp.

Replied By Hyman (Hong Kong) on 08/31/2015

Anelissa,

How's your progress of using Valtrex to treat? I really want to know your result and the details. How long does you take the pills? The dose? And does the NP come back after stopping the treatment?

Thanks

Replied By Jennifer (Nipomo, Ca) on 12/04/2015

Anelissa from Brisbane,

You are very knowledgeable about this. I was diagnosed yesterday and am very sad that so little is being done to understand the cause of this and solve this condition. I am wondering about the plaque you mentioned. Is it a white fibrous looking tissue that forms as the sore is "healing"? The dermatologist said it is protein?? What do I do when it is in this stage? I am currently on a topical steroid (that seems to do nothing). I heard that Emuaid works on healing the sores quicker, but does the Valtrex stop them from returning? I am so thankful that I found this site. I am sad to hear that you all are suffering from this, but glad to hear that I am not alone. I have also found that even when I get a scrape from something totally unrelated (scraped my shin on a boulder), as it is healing, it also turns into one of these white, hard scabs. It must have something to do with the way our bodies are laying down and forming new cells and tissues. Does any Brandy work or does it have to be a specific type?

Replied By Debi (Oregon) on 01/25/2016

Please let me know if the Valtrex worked. It's making me very sick but will be worth it if it works. I've been going to doctors for this for 3 years and they have never suggested it. Thanks for any help you can give me.

Replied By Marguerite Tideman (Australia) on 11/01/2016

Anelissa from Brisbane - Thank you. This is the first time I have heard someone describe the same symptoms of this skin disease which first presented for me 3 years ago. I have never been able to explain to my GP exactly what this keratin type 'gunk' is inside the nodule, and you have described it perfectly. Even the way you say it needs removal before the lesion stops itching. Wish I could find a definitive explanation of this terrible skin disease.

Replied By Lisa (Wv) on 02/17/2018

With regard to using anti-viral meds (ie, Valtrex) for treatment of Prurigo Nodulares. This person posted back in 2014. Are there any more comments or threads of discussion on this?

I was diagnosed with PN & am trying whatever I can. My dermatologist seems to be letting me take the lead on my treatment. Not a good sign!

Any information you have is greatly appreciated. I've nearly become a recluse with this disease & want it gone!!

Thank you!

Replied By Mama To Many (Tennessee) on 02/17/2018

Dear Lisa,

Elderberry and Olive Leaf are two great herbal antivirals. If you want to try an antiviral, one of them may be useful.

You might also consider Essiac Tea which helps a lot of chronic conditions.

~Mama to Many~

Replied By Art (California ) on 02/18/2018

Lisa,

I posted an abstract of a study on the subject of PN last year that showed very good results in the patients involved with that study. Hear is a copy of that post. Also below that post is a reply post from someone who read that post and also got good results this year! If you try it, I hope you have just as good results! I can see how you may have missed my original post, because some how my post has been somewhat displaced and the reply post actually appears well before my post. Hopefully EC can move those two posts around so that they actually make sense in relation to each other and for people such as yourself who are trying to find a remedy that works!

Art

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In reply to Linda (Texas),

Below is a link to an old and obscure abstract suggesting that capsiacin cream may have profound effects on people living with prurigo nodularis (PN). In the study it was found that all patients with PN who used topical capsaicin cream were able to eliminate pruritus within 12 days! From that point, gradual healing started. In the study, they used capsaicin cream that was 0.025% to 0.3%. By comparison, this cream is .01%:

This one is .1% :

https://www.walmart.com/ip/Zostrix-Hp-High-Potency-Topical-Analgesic-Cream-Arthritis-Pain-Relief-2-oz/10794756

Not to minimalize the effects of this cream, but I have tried it before and it felt like it was burning. You must be very careful when handling it also as you never want to have any on your hands and then rub an itchy eye!!! It's hot stuff to be sure, but if it can do what the abstract suggests, it may be worth the effort if you can handle the heat of it. Capsaicin is known to help ameliorate pruritis (itching), but sometimes I wonder if it is able to do that simply because it is so hot itself that the burning sensation just over powers the itchy sensation??

Here is the abstract:

J Am Acad Dermatol. 2001 Mar;44(3):471-8.

Treatment of prurigo nodularis with topical capsaicin.

Ständer S¹, Luger T, Metze D.

Author information

Abstract

BACKGROUND:

Prurigo nodularis is an eruption of lichenified or excoriated nodules caused by intractable pruritus that is difficult to treat. Therefore the antipruritic efficacy of capsaicin seemed to be of particular interest because this alkaloid, extractable from red pepper, interferes with the perception of pruritus and pain by depletion of neuropeptides in small sensory cutaneous nerves.

OBJECTIVE:

The aim of this concentration- and regimen-ranging study was to evaluate the efficacy, safety, and practicability of capsaicin in the topical treatment of prurigo nodularis in a large series of patients.

METHODS:

A total of 33 patients with prurigo nodularis of various origins were selected to receive capsaicin (0.025% to 0.3%) 4 to 6 times daily for 2 weeks up to 10 months. The consecutive follow-up period was up to 6 months. In 7 patients, skin biopsy specimens were taken before, during, and after therapy and investigated histologically, immunohistochemically, and ultrastructurally.

RESULTS:

All 33 patients could be evaluated for efficacy. After cessation of the symptoms of neurogenic inflammation, such as burning sensations or erythema, all of them experienced a complete elimination of pruritus within 12 days. In addition, capsaicin largely contributed to the gradual healing of the skin lesions. After discontinuation of the therapy, pruritus returned in 16 of 33 patients within 2 months. At the ultrastructural level, no degenerative changes of cutaneous nerves could be found during or after capsaicin therapy. Depletion of substance P was demonstrated by confocal laser scanning microscopy thus confirming the specific effect of capsaicin in vivo.

CONCLUSION:

Topical treatment of prurigo nodularis with capsaicin proved to be an effective and safe regimen resulting in clearing of the skin lesions.

PMID:

11209117

[Indexed for MEDLINE]

Please keep us posted on your progress!

Art

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Capsaicin Cream

Posted by Marilynn (St Louis Mo) on 01/18/2018

I took advice found on this website after suffering w Prurigo nodularis for a year and half. Caipasin cream has worked wonders for my skin. This skin issue is like chicken pox but lesions are much larger.

Replied By Renee (Australia ) on 12/09/2022

Has REALLY helped me as a sufferer of 27 years!!! Thank you 🙏

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Treatment of prurigo nodularis with topical capsaicin.

Author information

Abstract

Capsaicin Cream