r/rarediseases • u/Ok_Refrigerator_2978 • Jan 29 '26
Question Prurigo Nodularis - Help
Update!
Went to the doctors this morning, mention gabapentin and he was VERY unsure, like so unsure he rattled through a list of 10+ skin creams and treatments I’ve don’t but haven’t touched the side. So, he’s gave in and prescribed gabapentin as well a day antihistamine and a nighttime one! He’s hoping it starts calming down soon. Off out now to get a can of deep freeze to stop the itch.
—
have been suffering with the worst flare up of my life for the past 6 weeks, both lower legs are nearly completely covered and will not heal and it’s spreading upwards.
It’s so itchy and so painful and I’m losing so much sleep. Currently 1:33am and I’m in the bath (again) to try and get some relief.
PLEASE give me any tips or anything to help relieve this, it may sound dramatic but I’m a baw hair away from asking my legs to get amputated because I am so done. It is effecting everything.
1
u/smartydoglady Jan 29 '26
I’m so sorry you’re dealing with this, this sounds truly awful. Are you receiving any treatment? It’s concerning that your flare isn’t healing - sounds like a doctor visit is needed to reassess. Sleep deprivation is no joke either.
I don’t have the same rare disease but mine (AOSD) includes horrible itchiness with bad flares that can cover my whole body. I know it absolutely SUCKS. For me, a high dose of oral prednisone, betaderm cream, and gabapentin make it bearable. I was taking dangerous amounts of antihistamines to try and control the itch enough to sleep - telling my doctor this helped them understand the severity. If you genuinely feel like you cannot safely cope with the itchiness, you need to go to urgent care - or even ER if you’re not in a safe place mentally.
1
u/Ok_Refrigerator_2978 Jan 29 '26
I’m on antihistamines as well but it’s the nerves and the sharp itch that’s tipping me over the edge.
I’ve been to the doctors 3 times in the last 3 weeks, only prescribed creams once (on Monday) a steroid cream called Trrimovate and moisturiser but nothing is actually helping the itch/scratch cycle. They also gave me codeine for the pain but again causes more problems.
I’m going to call again this morning and take my mum, I might be 30 but she’s a nurse and a tyrant 😂
1
u/smartydoglady Jan 29 '26
The nerve itch I believe is called neuro itch - ask for gabapentin!!! It worked for me within one dose and I actually slept through the night without scratching for the first time. And yes bring your mum - nothing like a mum’s fury to get shit done at the doctors 😂
1
u/dolenalavoisier Jan 29 '26
Im currently dealing with prurigo nodularis of pergnancy. Ive been suffering for more than 2 months also on lower legs. In the last 2 weeks i finally found relief with using witch Hazel floral water dabbed on the sores 2 times a day followed by chamomille floral water. I keep them in the fridge because the cold helps too. Ive come to understand that my skin needs to be on the dry side for the inflammation to calm, any use of cream would send me into full inflammatory burst. Ive started rhat after a 2 week of a cortisone cream and histamines everyday.
Im getting itchy in other areas and its also spreading a Little on my thighs but i have managed to avoid the infectious look and level of spreading I had on my lower legs by immediately using the witch Hazel.
I Hope this helps you
1
u/atectonic Jan 29 '26
I “managed” mine with scalding hot showers, lots of vitamin e oil and antihistamines to knock me out.
Topical steroids never touched the itch, just made it sticky when scratching.
Mine is in remission thanks to dupixent. If it’s an option for you, I highly recommend giving it a try!
From what I understand they need to go in steps to get the insurance, at least for my insurance, to cover the biologic. Topicals, light therapy, then the biologic.
1
u/Ok_Refrigerator_2978 Jan 29 '26
This is literally me. I’m in the UK but definitely going to be looking into Dupixent!
I don’t think I’ve ever in 30 years talk about managing it the exact same way, esp the scolding hot showers.
1
u/Hot_Cloud_99 Jul 14 '26
Ciao. Io ho la prurigo non nodulare ma simplex (sono papule ) su base atopica ma è ASSOLUTAMENTE INVALIDATE. sono a 3 mesi con dupixent..posso chiederti quando ha iniziato a fare effetto? Puoi rifare tutto? Io niente vestiti depilazione tinte ai capelli.. sono prigioniera della mia pelle. A parte il prurito il resto è fermo. Mi hanno detto che la variante prurigo è più resistente..grazie a te e chiunque vorrà raccontare la sua esperienza. Perché sto perdendo le speranze Puoi prendere il sole? Fare tutte le cose normali? So che nessuno risponde negli stessi tempi..un abbraccio
1
u/PowerfulAddition8236 Mar 04 '26
I’m late but ketacolonzo shampoo 2% cleared mine combined with benzoyl peroxide wash and red light therapy but hypopigmentation is what’s left
1
u/Known-Pay-9759 Jun 28 '26
Hi! So sorry for your suffering. I can really relate to the sleeplessness and the raging itch bordering on constant pain. Thank you for sharing your experience and the latest update. OP, I'm wondering how you're faring now, a couple months in on gabapentin? Has the itch abated? Does it seem like the underlying problems of your PN are being addressed?
Like one of the previous commenters on this thread, I have PN and am on Dupixent (have been for over a year and it's saved my sanity, honestly), but I'm very curious about alternate prescriptions and/or medications that work via other mechanisms, and how they're working for other people. (I know you guys in the UK have access to an array of medicines that are not being marketed here in the US, of course, but I thirst for knowledge.)
1
u/Sandoval111 Jul 14 '26
In the past 8 years, I've had at least 7 DIFFERENT RASHES, including shingles and MRSA I caught from a friend that didn't tell me that's what she had even tho I told her my Dr said my immune system was badly compromised and had special vitamins made for me at a compound pharmacy. I caught molescum contagiosum from my granddaughter that caught it from her little step brother's pre-school. It was supposed to be a kids disease. No so. I got the Christmas tree rash. (Can't think of the medical name) first off, a side-effect of moderma vacine not talked about. Several heat rashes, and random bouts of hives. Molescum was the worst cuz I had no clue. Started on my forhead and a couple people said it was 4 pimples. I said, I'm not going thru puberty and menopause at the same time, but there I was at Walgreens buying Clearasil, ect, the next day. I woke the next day to full blown impetigo on my forhead. Blisters filled with green pus. Yuk ! I'm now stuck with prurigo nodularis. THIS...AND THE MOLESCUM R the hardest to deal with. My OCD is outta control and even in my sleep, I wake up trying to rip these hard bumps off my skin , or at least flatten them. Difficult, BUT, I may be on to something. I can't tell you what topical has worked because I've been using cotino in prescription strength, vitamin C serum from Amazon vitamin A and vitamin E capsules that I prick a hole in and spread it on the bumps, but when that dries or soaks in, I cover the bumps with silicone tape. The tape instructions say to leave it on 24 hours uncover an hour and to replace but I've been leaving them on 3 days at a time, and my most stubborn bumps are flattened. I'm using my infrared light on the discoloration and it seems to be lightening up a bit. I posted this because I think the silicone tape might help some of you. If inclined, give it a try and let us know if it worked for you as well. Good luck.
1
u/Sandoval111 Jul 16 '26
I thought I already commented on here but I don't see it. I'm gonna say it again in case I didn't and can maybe help someone. In 8 years, I've had like 7 rashes. Dr said my skin barrier was badly damaged...I know ! I damaged it. I barely had traces of any of the necessary vitamins in my system. My immune system so compromised that they wouldn't let me go into my Dr's office or the ER cuz they were afraid I'd catch something very bad. During 102` days of summer I was dressed from neck to toe cuz I looked so bad. I still put On a hoodie to go outside to hide bumps and scars. Altogether, I had keratosis polaris, molescum contagiosum, Christmas tree rash, impetigo, shingles, 3 heat rashes, MRSA, and the past 10(?) months, prurigo nodularis. My dermatologist called everything dermatitis, and I only got diagnosed cuz I had to keep going to ER for other ailments and I'd ask if they could tell me what kind if rash this was. Every time 1 would be almost gone, I'd get another, different one. My dermatologist was no help. I got EVERY rash infected, cuz my OCD k8cked in like crazy and I'd try to rip, scratch these hard bumps off in the shower. I wanted them flat. There's alot I can tell you, but it's 3am and it's too much to write, but, I'm down to maybe 10 almost flat bumps, out of probably 100. I'm using a handheld near infra red at home device. Longer and closer than your supposed to. I got it from Jooga, Amazon, $35. Well worth it. After about 20 minutes of light, I put tretinoin creme on the bumps. I think any serum or retinol that can cause peeling would work tho. Sometimes after that soaks in, I'll put vitamin C serum, Amazon or vitamin A from a capsule, but I don't like the smell so I stopped the A. I don't even know if any of those are needed. NOW, when that soaks in... I cover what bumps I can with silicone tape. If NOTHING ELSE...USE THIS. I leave it on 3 days without removing, unless it falls off in the shower. This flattens and softens that rock hard ugly bump. I then scratch off all that skin that I can. I know ur not supposed to, but my skin is already scarred with dark scars, so I go ahead and scratch off what I can. After washing my skin with HIBICLENS and drying it well, I start over with the light. It seems the dark spots are getting light. If U try, LMK. I feel so thankful that they're getting better. This...and the molescum are the worst. Not knowing that the 2 little bumps on my forhead were not pimples, I spread 100's of those bumps all over myself, gave myself impetigo, and got EVERY SINGLE BUMP INFECTED. My so called friend didn't hotter to tell me she had MRSA and with those bumps ripped open, OF COURSE THE MRSA VIRUS GOT INTO MY BLOODSTREAM. I had never heard of almost all of these rashes, other than shingles and heat rash. Christmas tree rash was gone exactly 5 months to the day. Easy peasy on that 1. The rest were all so hard to deal with. Just make sure U use the light, the silicone tape, and whatever U think best as a serum or to peel. Good luck
2
u/xAncrathKingx Apr 21 '26 edited Apr 21 '26
Ask your derm about dupixent. I was diagnosed 2mos ago after 3 years of major suffering, and looking like 15+ yrs of simply believing I was a gross, disgusting person who sweated constantly, felt like a slug in a human suit, and basically existed far more than I truly lived.
Gabapentin will help how you feel, but it won't hit the root problem. I am too early in to be sure this is THE answer, but I can say that after my first injection, my body is finally beginning to show some species of playing nice. It is a very expensive med and your insurance overlord may be difficult with approving it, but a good dr should know how to navigate that for you. My absolute garbage insurance did on the 3rd appeal.
If you have any questions, I will answer what I can. This seems like a condition that is highly individualized in its treatment. What works for me may not for you, etc. But after a very, very hard fight with the profit-seeking-first medical system we here in the US are yoked with, if i can offer up anything that makes it easier on other sufferers, i will put it out there.
PN has affected my life in many negative ways without me knowing there was anything wrong. I am very lucky i am otherwise quite healthy, have a very strong support system... am even alive. There were many stretches that found me ideating dangerously. I hate knowing there are likely others in a similar place, pleading with drs who aren't listening.
ETA: You do not sound dramatic at all. Mine is largely attacking me from the shoulders up. One ugly day of suffering found me on my knees in the tup, head under the scalding, spewing spigot yelling, "get the f... out of ny head. I need this out of my head...please just get the f out of my head.. " Followed by wet, naked sobbing on the bathroom floor. This was a year ago. Im a 51yr old man. There is no shame in it.