I have had prurigo nodularis for 11 years. I have had ti...

Read my comment, it may help you

Hello

I'm so sorry to hear of your troubled skin. My brother was just diagnosed with this.

Can you please give me an update on your condition. Treatments anything that has helped if anything has thus far. I hope something has helped and your skin is feeling good again

Thank you Sincerely Cheryl

ATTENTION PRURIGO NODULARIS SUFFERERS!  I have had this for over 2 years now.  My family doctor saw that it wasn't any better and referred me to an Immunologist.  Two weeks late I had the CORRECT diagnosis.  Prurigo Nodularis translates to "itchy nodules".  It is just a name dermatologists give a condition that they don't know how to treat!  GET YOURSELF IN WITH AN IMMUNOLOGIST!  It is an immune response to something going on in your body and your immune system is attacking you!  It is some sort of auto-immune response or disease!  I don't that the name for mine yet - just found out this information.  I noticed that you mentioned Crohens Disease - that, too, is an auto-immune problem!  Hope this helps you.  I was flabbergasted to find out all this yesterday!  Good luck! 

It is so encouraging yet also disheartening to know that there are so many sufferers of this debilitating skin disease, which is exactly what it is. I later discovered from my father that he had it as a child whilst growing up in Barbados and that the clean and caustic sea baths helped kill any infection whilst a natural balm consisting of coconut and pineapple helped soothe the boils. Yves Rocher has created a fantastic organic sugar scrub with mandarin, lemon balm, and cedar which I use everyday as a steam cleaner to my face and shoulders. This has completely transformed my skin as it rebalances the essential oils and nutrients which your skin needs. The ingredients in the products are also renowned for healing scarring - and they have done just that! I have had to wait for nearly 20 years to get my skin complexion back to how it was when I was 18 years old. I absolutely swear by this product and I have used everything from Dermol - which eventually dries the skin and causes the skin cell to be dependent on reapplication - Synalar - which although effective, is an extremely powerful corticosteroid which causes premature skin aging due and potential skin damage due to thinning of the dermis - and light treatment - which was impossible for me to keep regular appointments as a full-time caregiver. There are no side-effects with the Yves Rocher products as they are completely natural. I had never used their products before until I began working for the company. After a visit from a very experienced and compassionate company rep I was given a range of their Plaisir nature botanical oils and scrubs as well as from their Riche Creme and Zero default range which has been produced under medical supervision. There used to be shops in the UK but you can only buy online or by telephone. I just wanted to share this recommendation with you as many UK dermatologists are ignorant about what products are available in the natural beauty industry. To prove how effective their products are, I stupidly diverted and used an alternative natural product as I had run out of my Yves Rocher and the nodules are back and flaring up with avengance. Another natural remedy which has apparently had excellent reviews on the market is Emuaid which is specifically for prurigo nodularis. I bought it once for my mother's severe pressure sores and it ecelerated the healing process within days as opposed to weeks. Diet can effect my skin condition, especially a high meat diet. Whenever I purge and eat mainly vegetables the conditon improves.

I have had PN for four years, been to six doctors and tried several ointments, prescriptions and every natural cure possible. I'm 65 years old and literally have never been ill... except for these itchy bumps. I've studied nutrition, been health conscious my entire life and don't eat any junk or processed foods. Recently I have water fasted, detoxed, tried a fruit juice diet and vegetables-only diet. Nothing helped! Now I am totally convinced it is related to my nervous system. Not that I am consciously nervous but (as one doctor put it) my skin is aggravated. Now mostly I drink organic herbal tea to relax and become less anxious and stressed. It seems to be helping; I'll keep you posted.

I have had success with Protopic ointment. The generic name is Tacrolimus. It is not a steroid. I see improvement after a few days, especially if the lesions are covered with gauze or bandaids.

My sister has also tried everything like you did: creams, light, Thalidomide which gave the opposite result giving a strange red rash. Inspite of what the doctors say we are inclined to think it's a strange parasites invasion into her skin, as the itching is not general in all the limbs or parts of body where she has nodules but selective and mostly still ocures at evenings and nights. Also because while curing her skin from infection on those nodules which she opens she extirpates a strange tiny material, almost transparent and long like a worm and after that the itching is gone from that nodule. The doctors do not explore that option too much and they are inclined to think this is a skin or autoimmune desease denominated prurigo nodularis.

This all took her will and hope to live a normal life and be able to sleep and relax

I don't know how she is holding on. We feel helpless too.

I think all this is because this type of desease is a silent one. There is no epidemic and luckily people do not die from this, thus the medicine doesn't give any solution.

I am new to this forum but share the skin problem for 4 years now. There was no help for me so I begun researching natural ways to treat myself 3 years ago. I have found that the strongest oregano extract supplement is working. It works like Cheyenne pepper but gentle and from the inside. GNC carries a high dosage. I have a patented treatment that is not ready yet that I have been using for years and perfecting it for topical treatment. It heals the growth but I'm testing to fade it. I'm not a professional but have studied herbs for over 20 years. I am a patient and this was brought on through medication. Mogellons is not the answer. I have been through all medical fields. When they can't figure it out they name it that. I am 63 years of age and tried everything. Now I research almost constantly for an answer. I will let everyone know when I have a true answer naturally. God bless

Hi! I commented a while ago, but can't find my reply. Anyhow.

My partner has suffered from Prurigus Nodularis for 15 years now.

Had tried: Shots, Tapes, creams, lamps, etc, ect. Everything under the sun. We live in Ohio.

2 month ago I was watching a show calls: Hamilton Pharmacopedia, on Vice ( I like to learn new thing)

In one episode if I recall correctly called: The ... something of DMT...

In that episode I found a root. A legendary one about a tree call Mimosa tenuiflora, in the TV the people in Mexico call it: TEPEZCOHUITE .

I said, let's try it, who knows, I mean it won't do any harm.

We got the soap, one cream and the prouder it self, everything on amazon and legal. The powder we where combine with our own things (Aloe Vera extrac, and cocoa butter).

It's been a Month and the itching has little by little is gone. She was a point that she couldn't sleep.

This is working for HER. We do not advertise or own or have any economical gain by sharing this here. Everybody is entitled of their opinion and their own investigation.

NOBODY is like the other. If they recognize that gene therapy will be the answer for everything medical. It means that we need to focus on what works for us Individually.

This is another "thing" in a sea of possible solutions. This is the experience we had. Is working for now... let's see in 2 months.

Thankyou for your information! I have had NP for 4 years. I have it on my scalp for the last 13 months the last 5 the nodules and sores have covered my entire scalp. It has been unbearable until recently when i was finally prescribed prednisone and methtrexalate. I am fearful of living with the pain and swelling i experienced for the last 5 months. Having the NP on my body is nothing compared to what i have gone through with my scalp!So i DEF appreciate the input u have shared! Hopefully i can have the same success!

My dermatologist thinks I have PN. I have had an extremely extremely red itchy rash on 3 separate occasions. Each time it gets worse and covers more of my body. The first time was only on my ankle. This time its almost on every part of my body. Each "episode" seems to last about 8-9 weeks then itching slows but am left with deep large scabs. A couple weeks ago it was so bad and itchy I had anxiety attacks and was practically suicidal. My thyroid is normally hypo but since this all started it has been almost hyper stage (TSH at 0). I have several other autoimmune problems as well.  One doctor thinks it may be a medication allergy.  This is so awful and I can't bear to think another outbreak is in my future. I thank everyone for their input. I've read all the previous replies. Please help if there is anything new to try that has worked for you!

I was diagnosed with Prurigo Nodularis six years ago.   I was prescribe everything under the sun (betamethasone, methotrexate, triamcinolone, Valtrex, 52 UV light treatments, gabapentin and calcipotriene) and nothing worked. I was always bleeding and had some open sore on my body and couldn't withstand the heat from a hot shower because of the sever itching afterwards. After visiting several dermatologist, with really no hope in sight, I found one that put me on the path of an itch -free life. He did what no other doctor thought to do-- he performed a biopsy of the nodule.  In that biopsy he found high counts of eosinophils (which causes itching) in the tissue that led him to recommend me to an allergist/immunologist, who turned out to be my superhero. Still itching at this point, but gave going to the allergist/immunologist a try because at this point what else did I have to lose, as it turned out going to this doctor was one of the best decisions of my life.

So the allergist/immunologist performed a series of allergy tests on me and did some blood work to also find that I have high Ige levels in my blood which also cause itching and that I am practically allergic to everything growing outside in the state I currently live in. He gave me a shot of celestone. The celestone provided me with on week of relief that I never knew was possible and renewed my hope in finally beating this thing. 

After the celestone wore off, I found myself back in the allergist/immunologist office talking excitedly about the  hot showers I had taken and being able to get a full nights sleep. We immediately discussed possible medications and we started with cyclosporine and levocitirizine (generic xyzal) I take 6 cyclosporine  twice a day and 2 levocitirizine twice a day. I have been itch-free since.  I am also getting allergy shots to help reduce my immune systems response to allergens, which appears to be one of the main causes of my itching.

I have journaled my journey with this condition and to date I am in a much better place than I ever believed I would be. Sometimes I get slightly itchy, but we are working on reducing that with a new medication called Fasenra which is designed to kill all eosinophil cells in the tissue ( they are not suppose to be there..). I am on my second dose and I feel so great now, that I almost forget I had anything and my only reminder is the fading scars on my arms and legs.

Please feel free to contact me. I can't remember the last time I had a severe itching episode. I believe it has been almost a year. I am so thankful that I continued to persevere when everything looked so bleak at first.

There is hope!