What is PRURIGO NODULARIS: Treatment to STOP the CRAZY ITCH | Shawn Kwatra
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- Опубліковано 3 лип 2024
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READ complete transcript: www.skinterrupt.com/302
What is PRURIGO NODULARIS?
This incredibly itchy skin condition is one that until recently didn't have great prurigo nodularis treatment options, but with new research + Dupixent approval, our guest has much to share!
My guest today is Shawn Kwatra, MD is a Director of the Johns Hopkins Itch Center and an Associate Professor of Dermatology at the Johns Hopkins University School of Medicine in Baltimore, MD specializing in medical dermatology areas of clinical expertise, including atopic dermatitis, psoriasis, chronic itch of unknown origin and dermatology for ethnic skin. Dr. Kwatra also runs a basic science laboratory and clinical trials unit and is funded by the National Institutes of Health and multiple foundations.
IN THIS EPISODE:
00:00 Introduction
01:52 What is Prurigo Nodularis + its symptoms?
03:05 Where does Prurigo Nodularis typically affect?
03:48 What age does prurigo nodularis show up?
06:24 Does it spread + get worse with time?
08:25 Are there any infections of the lesions associated with Prurigo Nodularis?
10:54 Is there a distinct cytokine pattern with this condition?
14:50 Co-morbidities associated with PN
17:21 Prurigo Nodularis triggers
21:46 Are antihistamines helpful?
23:41 Treatment options for PN
26:26 If a biologic drug stops the itch, will it allow the lesions to heal?
LINKS DISCUSSED IN THIS EPISODE:
• Dr. Shawn Kwatra - www.kwatralab.org/
• Follow Dr. Kwatra on Twitter - / drshawnkwatra
• Get Dr. Kwatra's book Living with Itch: A Patient's Guide - a.co/d/h5B3fjl
• Healthy Skin Show ep. 275: Why You're So Itchy (HINT: It's Probably Not Histamine) w/ Dr. Shawn Kwatra - www.skinterrupt.com/275
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ABOUT JENNIFER FUGO, MS, CNS:
Jennifer Fugo, MS, LDN, CNS is a clinical nutritionist empowering women who’ve been failed by conventional medicine to beat chronic skin and unending gut challenges. Because she’s overcome a long history of gut issues and eczema, Jennifer has empathy and insight to help her clients discover missing pieces and create doable integrative plans.
She holds a Master’s degree in Human Nutrition from the University of Bridgeport and is a Licensed Dietitian-Nutritionist and Certified Nutrition Specialist, and is the host of the Healthy Skin Show.
FREE eGUIDE: Are you ready to identify the hidden root causes triggering your chronic skin rashes? Download my Skin Rash Root Cause Finder to get started: www.skinterrupt.com/opt-in-ro...
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#prurigonodularis #itchyskin #itchrelief
Hope you enjoyed this episode! I'd love to hear what you thought. Leave your comments + questions below :)
And if you want more information on this topic, check this out →
Itch - www.skinterrupt.com/?s=itch
THIS !!! THIS !!! THIS !!!
So very validating. I want the 4 hour deep dive version.
The most accurate way to describe the itch is PSYCHOSIS INDUCING …. The appearance of which resembles more of a need for an EXORCISM than, “Have you tried an oatmeal bath.”
I’m full of gratitude for this episode and full of frustrated rage
I'm glad this was helpful to hear. I hope that this helps people out there so please share this if you're in an online community for PR. It's an awful condition and I'm hoping to share more so let me know if there are any questions or specific topics about it that I can help with!
YES! It's 4am an I am MISERABLE!
I am woman in my mid 50's. This sounds like exactly what I have. Mine started about 3 weeks ago maybe from a bug bite.
Finally I got seen by a derm (very young) I suggested maybe scabies? (From those Asian foot massage places) She scraped skin but did not find anything but wants to treat me for scabies. Not in the usual scabie places. I don't want meds unless they know for sure what it is.
I googled and it sound EXACTLY like this!
My 21 year old doesn't have anything
No creams, baths, steroids or antibiotics working. Been 3 weeks . I get about 3 hours of sleep.Ready to kill myself if it doesn't get better.
Reply
Any luck? I know I am diagnosing myself but it sounds like 100 percent what it is.
@@lf9341. I was just diagnosed today after 15 years of suffering and gaslighting. I have been so depressed because of it, but hope has been restored today. I got a steroid shot, labs, labs, labs and follow up in six weeks. Best wishes for you!
I was diagnose with prurigo nodularis. And Im undergoing PHOTOTHERAPY and taking pill METHITREXATE, FOLIC ACID and OMCET CITRIZINE HYDROCHLORIDE.. and its HEALING..
I lived in a hot country for 10 years, bitten by a sandfly also a tick, and thought this was how I got nodular purigo, but a mass of stress was also a possible factor. Returned to the UK (am white female) and discovered this massive problem was not known much about. Several doctors, five consultants, 4 hospitals later, suicidal and desperate, I was finally diagnosed with NP after many biopsies. Had been treated for scabies, tick born diseases, anti biotics which made it worse, etc, and clearly no treatment worked until diagnosed. Given Topical creams, changed diet to a plant based (any sugar sets off a flare up which is painful) and trying to destress my lifestyle and problems helped enormously. 12 years later and my NP is finally manageable. Had all treatments but only barrier treatments help. With 3 other auto immunity problems, one being Raynauds which affects the blood stream and makes body cold. By keeping warm can also be an irritant to NP, so daily a challenge. It is wonderful to see research is being made as has been used as a general term and not specifically studied. I hope not done on animals as does not affect them.
Desperation point can lead to suicide, and I was fortunate to find an amazing dermatologist who diagnosed me correctly, but who has sadly now retired, and I am finding not much progress in our country.
Let's hope now this great Doctor will help find even more ways to aid the incredible itchiness and pain those who suffer have to endure. Even having a shower or bath was very painful, but now years later, I feel the most comfortable just sitting in a bath being soothed by treated water.. 😊. I'm convinced the nodule comes from under the skin from the blood stream, not from initial scratching, and one thing noticed is nodules are mirrored on the other side, ie, left leg nodules will be in similar place on the right leg, or arm/thigh etc.
12 years countless dermatologist I finally diagnosed myself .. I researched n researched n saw a pic of this n realized that's what I has
I am suffering from this right now
I have had prurigo nodularis for over 10years now. I had biopsy year 2014 and confirmed that I had it. I am bery happy hearing that someone is studying about our disease. I had no hope that I will get well until I hear this. I have accepted that I am dying with my disease. I prayed and hope I soon there will be medicine for us
Have you spoken to your doctor about Dupixent? It is an approved treatment option here in the US. It's not a cure, but it can bring a great deal of relief.
See my comment about monoclonal antibody treatment.
It’s great to finally hear someone talk about this disease.
I was diagnosed with vasculitis several years ago and then a couple of years ago was also diagnosed with Prurigo Nodularis. I am currently suffering through a flare that has been just awful! I get these sores on my chin, chest, neck, shoulders and legs. It’s a living nightmare. Thank you for bringing this terrible disease into the spotlight.
You're so welcome and I'm sorry that you are struggling with this. If I was to do another episode on PN, what would you want me to cover?
I am told l have p n but l don't have a itch .
I have just been diagnosed after having it for one year. 58 yrs old in Texas. I have Hashamitos thyroiditus and had my first shingles vaccine 6 months earlier. And I was under high stress when I broke out.
I need this doctor in my life!
Thanks for sharing this, after 14 years of this anything is worth a try!!!!!
This is exactly what I’ve been suffering from for 15 years! Just diagnosed today 😢 through the VA. Maddening
This video has so much good information! I hope content like this gets out to more doctors so they can recognize this condition and help patients find relief. I saw multiple doctors and was just told different versions of this being my fault - that I was intentionally self harming, had bad hygiene, just had anxiety, just needed to cut my nails, everything you can think of. I cried when i finally found a doctor who could properly diagnose me instead of blaming me. She said my case is absolutely textbook but a lot of doctors aren't familiar yet.
The whole experience has been frustrating and heartbreaking. And don't get me started on my insurance company denying me prescribed treatments.
Very useful information . Thank you
You're welcome! Are you struggling with PN?
Thank you for this episode. The change to my life and the helpless and hopeless feelings that come with it - it's just good to see this discussed. The sleeplessness and someone recognizing that symptom chokes me up bigtime. Thank you again.
You're welcome. I'm glad that I could share this to help you feel seen 💛
@lf9341
10 minutes ago (edited)
YES! It's 4am an I am MISERABLE!
I am woman in my mid 50's. This sounds like exactly what I have. Mine started about 3 weeks ago maybe from a bug bite.
Finally I got seen by a derm (very young) I suggested maybe scabies? (From those Asian foot massage places) She scraped skin but did not find anything but wants to treat me for scabies. Not in the usual scabie places. I don't want meds unless they know for sure what it is.
I googled and it sound EXACTLY like this!
My 21 year old doesn't have anything
No creams, baths, steroids or antibiotics working. Been 3 weeks . I get about 3 hours of sleep.Ready to kill myself if it doesn't get better.
Same here !
Thanks
I found out that I had this dreaded skin disease about 7-8 months through a biopsy. After months of suffering!! Thank you for bringing light to PN
You're sooooooo welcome!
Months? Lucky you. I've dealt with it for 30 years.
Wow! I've been dealing with this disease for 4 years, and this is the most information that I have seen or heard. My trigger was chemotherapy with platinum based drugs for lung cancer.
@@barkerbiz not that I am aware of.
I've been dealing with this for the last 2 years. Thankfully it's clearing (ever so slowly). The 2 most helpful products to deal with my itching are Gold Bond Maximum Strength Pain & Itch Relief Cream with 4% Lidocaine HCI and Thyme Out Plus which is my favorite. Thyme Out is entirely organic and is a liquid so you can use a spray bottle to cover large areas. It's not easy to find, but Amazon does carry it as does one of my local nutrition/health/natural foods stores.
I've struggled with pn since 2013 at age 28. I wasn't diagnosed until 2021. I was in misery for all those years until I found the right dermatologist that actually wanted to make time for me. Anyone dealing with this please hang in there and make sure you advocate for yourself.
I’m dealing with this with my 6 year old son! He got a staph infection from a daycare when he was about 3 1/2 years old. Out of nowhere he just started picking! So from about 3 years to now he’s been picking and scratching his skin. He has dark spots all over his arms legs and thighs. As a parent it has driven me crazy!! trying to find out what it is and why this has happened… my son is now almost 7 and today a dermatologist of color told me it’s PN. He had prescribed dupixent. Officially discussing this with his dad to see if it would be a good fit for my son to try. This diagnosis’s has been a long time coming I have been so tired of dealing with this. My son is so smart so handsome and a happy child and now he’s forming a self conscious attitude about my he spots. He asked me could I buy him a bathing suite with sleeves because he’s embarrassed. It makes me so sad that he had to deal with this!! I had his pediatrician tell me that this was anxiety driven that he needed to see a phycologist 🤦🏾♀️ i just pray that he gets some relief and these spots clear up.
Thank you for this useful, good video. I was diagnosed with Pruigo Pappler three years ago by a dermatologist at a skin clinic. I got this disease after an insect bite on one leg, then it spread to both legs and both arms. I have noticed that I get worse from synthetic clothes and fruit, also creams and shower soaps. I have had light treatment with the dermatologist and it has made my arms healthy again, but both legs do not appear, but keeps the disease stable so that it does not spread. Was diagnosed with diabetes 2 this year and has severe asthma and EDS. I am a big consumer of plasters and have to change the bed several times a week. Fatiguing illness that itches intensely and burns and stings, but it also hurts in the legs. In Norway, my hospital Ullevål has come up with a new treatment for prurigo, but it costs so much that very few get it. They had patients who had jumped naked into the snow at night because the itching was so strong that they scratched their skin off.
Thank you for sharing your experience... I know it can be so horrible for some
Ohmigosh. Jumping in snow sounds so good to me right now. I'm in south Florida and the heat and humidity very very much do not help.
Flocinonide cream 0.5%. Apply it once a day and cover with gauze and tape.
After 2 years of these symptoms and 2 dermatologists, the 3rd dermatologist finally looked at my whole body and sent a biopsy off to a dermatological pathology lab to be diagnosed. I have some relief with Zyprexa 5 mg, Hydroxizine and started on DUPIXENT 4 months ago. At least my lesions have stopped seeping body fluid and itching is 40 % reduced. Anything is better than no relief. This is truly a type of torture and would not wish this on anyone! It started 3 months after I was hospitalized with Covid and before I had any vaccines.
I'm so sorry that you're going through that. But I do appreciate you taking the time to share your experience and hope you continue to improve 💛
Hi actually we have same condition i also suffered from covid 2 times then took vaccines 3 doses then after 6 month it started a bumps that soo itchy in my arms and then back and trunk almost 2 yrs now im sufferring thankss i saw this video and i saw your comment
I tried the only approved medication for it. It worked but I got the flu for the first time in 30 yrs. And a lung infection. I quit the dupixent tout suite
After months of being told I have excema it ended up being scabies from a cheap massage place. NOW I Hvae this hell! I have a lot of thick patches all over my body.
I was diagnosed with this, i was given emolients and antihistimine , neither work and i never had them biopsies ....ive really bad scarring from when they burst and i bleed out 😢
I have just been diagnosed with this Disorder in the UK, however looking back I have had this for about 9 years, I have an absolutely intense itch and just recently, I noticed lesions on my forearm
I have a Nodule on my thigh that has been there for 2 years and shows no signs of healing, my GP has just put me on a course of Prednisolone until I get to my Hospital appointment in the UK which will be around 2055
I'm sorry you've been dealing with this for so long! Has your doctor recommended the Dupixent option to you? It's approved here in the US, but I'm not sure about the UK.
@@jenfugo The only option in the UK is Phototherapy or Methotrexate, and I already have a compromised immune system, and i don't really want Phototherapy
I have this intense itchy over a year now and I thought it was menopause but after got on HRT and thought would go away but no. I went so many drs. But all of them keep subscribe to me medication with steroids and non of them help. Also I breakouts so mmuch that I’m embarrassed to go out and wear anything that sleeveless and short.
Have your doctors mentioned Dupixent to you as an option? It's free of steroids
@@jenfugo yes …I started a week ago and still no response yet. Dr. Said its take couple of weeks. 🤞. Thank you for responding. Did you hear any successful case?
I have had this disease diagnosed for 11 months but suffered from it for years before being diagnosed. I am allergic to a lot of drugs and have been diagnosed with sojurens autoimmune disease and raynoids autoimmune diseases. After spending over 30k o my teeth due to syjorens I just in the past month lost all I my upper teeth and in a denture due to lack of saliva from syjorens. I have been through living hell due to these 3 autoimmune conditions. So my dermatologist puts me on dupenskinfor the PN which has helped lead my skin some and also helped some with the itching but now I’m having to use a cane to walk and almost need a wheel chair to help me walk due to the I intense muscle pain from muscle cramps and pan due to side effect of dupexine!!! What is next ,I in I’mtdse pain,can’t sleep,fatigued to the max. Im70 years old, widowed and really can’t find a lot of reason to go o n, IM MISERABLE!! Any advice’s what as to what I can possibly try? Thanking you in advance for information as to what to do
I have been struggling for over a year, I live in England and have tried everything the NHS has to offer but nothing works. My last hope is light therapy which starts next week
I have had prurigo nodularis for over 10years now. I had biopsy year 2014 and confirmed that I had it. I am bery happy hearing that someone is studying about our disease. I had no hope that I will get well until I hear this. I have accepted that I am dying with my disease. I prayed and hope In god’s time I will be healed
I am currently having this skin problem for about more than 5 years and I’m about to inject a Dupixent by my Doctor, this video help me a lot…
I was in the clinic with Dr. Peter Lio on Monday and got you see firsthand how much Dupixent helped one of his PR patients
I've been dealing with this for years as hives. All of the creams and ointments I have tried helped but did not solve. The sores ultimately left huge craters that hurt. I finally went to a dermatologist to diagnose me with PN. I got my first treatment of dupixient. The next morning I could feel a difference day two could see improvement. Today is day 5 and sores that I have been fighting with for months are now gone. I'm thankful to the doctor for the right diagnosis and that dupixient is available. I finally have hope.
@@riseaboveit5236
Ohmigosh. This makes me so hopeful. I've tried so many prescribed and OTC products that I am now kicking around a bleach bath. I'm just scared of pain because I have so many open wounds.
A biologic sounds so good to me. Please update your post every now and then, if you can - hopefully I'll get a notification. I'd love to know if you have longer-term success with it. Good luck!
It os said rhat the itch will last for 6 weeks. So afyer t6 weeks would there be no itch anymore experienved by the person suffering from pn
I have had whatever it is on skin itch crazy,hard lumps feels like something bitung they crack open and then ooze and bleed over 2 years now doc thought it was scabies,then saw a dermitologist and he gave me different cream well I then got diagnosed with endometrial cancer so that's alot in itself ,I need to go back to derm for a biopsy but also it's like black specs and hard little slivers that fall off or protube thru the skin. I am so imbarrassed oh my sk8n also feels only and I have had a rash under my breath so I got nystatin powder it's so mentally draining oh I am female 60 yrs old had a hysterectomy and 2 chemo treatment need 1 more then radiation ! My skin also has a spine to it😢
I have prurigo at the age of 17 years old. I suffer a lot because I am always laughed at and told that I am a zombie. I am losing my confidence so sad that I need medical treatment.
Mee too, started when I was 17😑
I was recently diagnosed with this after years of dermatologists telling me I needed to see a therapist and that is was a mental condition. So insulting! Has anyone every taken dupixent for this condition?
I'm so sorry to hear that Kathryn. It's an awful condition. I know of several patients of Dr. Peter Lio's who have had amazing shifts in their skin after starting Dupixent. Obviously as you decide to go this route, you should review the pros and cons as well as potential side effects as the medication can impact everyone differently.
This hell hound started after I had a subarachnoid hemorrhage. So did type two diabetes, high cholesterol, high blood pressure, gallstones,..... 😒
I’m so sorry for u I too am struggling with this whole nitemare!! Praying 🙏🏻😵💫 it is 12:50 am
Im 27 noticed it while pregnant had my baby in 2020 and it got worst im in guyana and health care is not at its best its a life of torture note : i has 2 miscarriage before 2020 and i think the stress depression and fear started it
I was diagnosed delusional the schizophrenia, now PN! For 5.9 years! I have no itching. I have piercings and biting. Extremely painful. Was expoto scabies in 2018 but my disease came from property flushing plumbing that came into my home. Jet black water, no debris. Its been with me dince. Totally attacks head. private area and then moves out of hair and is eaten my skin
I am 65 years old diagnosed schizophrenia??! Now I'm not. Gaslighting for more than 5 y! These things crawl then pierce my skin. Not PN
I think I have this condition. It's the worst itch I ever felt in my life and it's so bad. I had this since June. I had erythema nodosum in the past. I have autoimmune issues. I may go to John's Hopkins. I can't handle this. It's so intense.
Dr. Kwatra is actually at Johns Hopkins. Perhaps you should see about scheduling with him or someone in his department since this is what they focus on. I very much understand the hell you're going through and know how detrimental it can be to your daily life and mental health.
I have this almost 2years it's horrible I think happen because stress the loss of 4 family members back 2 back this video help .Lots of good information
Also I have type 2 diabetes
Thank you for this video. I have been diagnosed with PN. Suffering for 20 years. One tiny pinpoint spot on my back where I cannot reach. I am ready to kill the nerve. I keep imagining liquid nitrogen to freeze the nerve or a laser to burn out the nerve. ...Back in the 90's I had laser treatment on a morton's neuroma which was 100% successful. Why not a laser for one pinpoint spot? Does anything like this exist?
I appreciate you sharing your experience. I don't know if that exists for PN unfortunately. That would be a question to ask your doctor.
I have fantasies of holding a lighter up to my arms and tummy and my back and letting the flame slightly sear my skin as I slowly drag that hand back and forth. Just letting it lick the skin, I don't care if it burns it to a crisp but I'll try to save some muscle covering if I can.
I only hold myself back from this because I think of myself lying in the local ICU burn unit and while I'm trying to heal, the scabs start the itch nightmare again and because I'm so excessively bandaged, I won't be able to attack my skin back.
I just broke two of my natural nails on my damn forearm as I dug them into the 8-10 bumps I have there. That was .... pretty gross, actually. Ok, I'm stopping. I want a laser treatment too....except that I'm super-ok if they just want to fillet the skin right off.
Omg, I hate this. I'm so tired and I'm so sick of hiding in the house from the rest of the world. Sorry, got carried away. Going through a pretty bad flare-up right now. I hate my life.
@@HopefulHil I understand.
Check your colon that can bring back hear skin issues as well
How I get Duplimab inj from Bangladesh & how to use for PN?
You'd need to speak with a dermatologist. I'm not certain if it's available there.
Thanks a lot.
Any help for this skin desease😢😢
Dupixent injections
I think I have this on my face. I have small fluid filled bumps that appear near the same area all the time ( around nose, chin and mouth, cheeks) and they get big and bust open ..since wearing masks with covid. The neurological burning in my chin is awful.
I'm so sorry that you're dealing with that. Have you seen a dermatologist and asked them if this is what's going on? It would be best to get a clear diagnosis.
@jenfugo I've seen 5 of them, I've been told everything from dermatitis, scabies which lol it isn't, prurigo nodularis, and mcas. I think it is a fungus
I'm going through this very badly.I couldn't hear the medical terms from 25:51 to 26:09. Can someone tell me if there is a medicine or content to reduce PN itchiness other than steroids?
We actually have the full transcript here www.skinterrupt.com/what-is-prurigo-nodularis/
Fabulous!. I purchased 'thanks' and contributed a bit from my side.
I was diagnosed with this disease after first being diagnosed with eczema. Does this mean I have both or that some dermatologists made mistakes?
I don't honestly know. It's certainly possible to have 2 different issues going on at the same time. This would really be a question for your doctor so you have a clear understanding of what's going on from someone who knows your case.
@@jenfugoTHANX for trying but the truth is there is no cure and/or efficacious treatment. I had histamine intolerance but I managed to heal it. As a survivor of scapegoat family abuse having an itch is the least of my problems though I do believe there is a connection.
It varies depending on your dermatologist and their use of terminology.
Generally if you have had longstanding eczema childhood, PN is not a separate finding.
I do not like the term - in particular the suggestion is that you have a psychological problem alone.
I have this condition for few months and just found out it might be PN as per specialist. What’s the best medicine to test this now? I hope there’s real cure soon.
I have no life quality yet I receive no help.
The NHS staff certainly don't care equally about all patients.
Unfortunately I hear that a lot about the NHS. I'm sorry you're going through that. Have you asked them if Dupixent would be an option for you?
Same with some doctors but there are still those who are very good with patient care too ....
About 3 years ago I had PN due to a mosquito bite that turned into PN. I cured it. My dermatologist did a biopsy and they shaved off the entire mosquito bite area and it never itched again after that. HOWEVER, I recently got another mosquito bite that turned into PN. Do I have to get it shaved off every time to cure it? There’s got to be another way. I’ve tried freezing it off with a wart remover, but it did not work. Can anyone please share their cure?
Bunu bende yasiyorim tamamen sitrese bagli sikposporin diye bir hap yutuyorum noduller kuculuyor
Can it happen to children
What is a skin biopsy? How does that identify an autoimmune skin condition that has no pathogens to identify?
I just found out I might have this PN after 4 months of intense itch bumps on my legs. Any cure yet? I heard Dupixent is only to eliminate the itch and very expensive.
I'm so sorry because I know that PN can be extremely detrimental to your quality of life and mental health because the itching can be soooo intense. There is no cure at this point in time. Dupixent (dupilamab) is the only approved treatment thus far which has been cleared by the FDA. You could talk to your doctor about trying it.
dupixent works very good Ive been on it 2 years if faithfully taken every 2wks
I promise you will be sooo happy...my symptoms started subsiding after one month and have been clear to this day...im still on dupixent and if I miss a dose my skin feels itchy dupixent kills the itching and drys up the nodules pretty quick...good luck with your recovery 🙏🏽
Dupixent works and is affordable with health insurance and going to Dupixent My Way to help cover. I pay nothing except my monthly health insurance payment. I took it and the itching went away immediately which kept my from scratching in my sleep, therefore, the wounds were able to actually heal. The nodules are built up scar tissue from continuous scratching.
The company that produces Dupixent offers a program to help pay for the treatment
Dupixent although expensive works. It's the first time I've felt hope in years
🙌💚🙏
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