I have had prurigo nodularis for 11 years. I have had times when it has gone completely [when i was in intensive care for 5 weeks sedated so i had no need to scratch!] but as soon as i came home it started to return. Then 2 years ago i was back in hospital with an attack of crohns, PN just as bad, with all the drugs in me. It started to go again, but you guessed it, it came back but this time much worse.
Have tried all sorts of treatment: light, creams and thalidomide, but gave up on it all. But i am now thinking of going back to hospital to give it one last try, maybe this time it might work!
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Please do not give up! I have had \"prurigo nodularis\" for 4 years and felt exactly the same. My nest step is to go to a infectious disease doctor. I DO NOT believe this is a skin disease. I believe that the nodules are a result of an \"internal disease\". Have you looked up Morgellons disease to see if it matches your symptoms???
I also am drinking Mona Vie for 2 months now. It has a very high level of antioxidents and has improved my condition both phsically and mentally.
I have just been diagnosed with this skin problem after being told and treated for many skin problems over nearly 3 years the drs are going to try uv light but because i took so long to find out what it is i have scars all over me have you tried this treatment and will it help?Is there anything to lighten the scars?
Cassandra - if you're having light treatment, hopefully that will help to stop, or lessen, the itching and improve the 'feel' of your skin. In my case, it did so, but I'm sorry to say that once I stopped having sessions, the itching did return. Maybe you'll be more fortunate. Depending on your skin type (and possibly the type of UV - A or B) you may get a bit of a tan, in which case your skin will look better although the scars themselves will still be there. For the actual scarring, the best thing I have found is injections of Adcortyl directly into the nodules. May take two or more injections for really bad ones, but the bumps shrink and become bluish, and either flat or slightly indented. Certainly preferable to big lumps. If, and this is a big 'if', you can stop the scatching, they stay that way. If you do scratch again, they come back, but you can always have the injections done again. I'm fortunate in that I have a sympathetic GP who is prepared to do them (double appointment slot) but I've got so many at the moment I'm back at the hospital for more. The other thing that claims good results for scarring is Bio-oil. Give it a go, as it is also good for dry skin, which tends to itch (although the itching you get from this condition is obviously more than just a response to dry skin). On the subject of itching, I've tried lidocaine, to anaesthetise the area, but it hasn't really helped. Has anyone had any success with capsaicin? I have asked at the hospital, but, as usual, if it doesn't contain steroids, they are sceptical.
Good luck!
I suffered PN for 28yrs, it was originally diagnosed as atopic eczema, however, I knew this was not what it was, and persisted until eventually I got the correct diagnosis. I tried numerous treatments including uva/uvb which helped for a short while, but then the nodules returned. My PN disappeared almost overnight 3 years ago and I attribute this to possibly two things, I stopped using hair proucts containing sodium laureth sulphate and sodium lauryl sulphate, two known skin irritants. (PN first started in my scalp at the age of 13) I occasionally get small lumps but they respond well to Piriton antihistamine. The other possible change was that approx 3 years ago I started having regular holidays abroad, lots of sun and sea salt which are good for this condition, however, if this was what cured it you would think the sores would return in between holidays?
I use Aveeno bath oil, which takes the heat out of inflamed skin and also moisturises to prevent itching, I have also used bio oil for scarring but there was no noticable difference. It may be worh changing hair or personal products such as shampoo, shower gels, bubble baths, washing powders and even toothpaste which can contain Sodium laureth Sulphates. Good Luck, I know how this disorder can affect self confidence, and general health, I feel great now that my skin is clear, dont give up
Thanks Smithm for remindng me about Sodium Laureth and Lauryl Sulphates. In fact my mother had suggested this, and I changed my shampoo. Unfortunately have gone back to Head and Shoulders, which does contain such 'nasties' so will stop again. I typically wash my hair in the bath (prefer bath to shower as I find it soothing, and I too use Aveeno bath oil - good range of products) so any shampoo product I use will be in contact with rest of my body where PN symptoms are. Not really considered their presence in toothpastes etc, but of course you are correct. Will try to eliminate them totally.
One thing, you mention that your symptoms stopped when (amongst other things) you started to take regular holidays abroad. I wonder, did the start of regular holidays co-incide with a general lessening of stressful events - for instance did you stop working? Don't want to pry, but what I'm getting at is a reduction in stress, which I feel is a big factor in this condition. My itching, and consequently nodules, certainly gets much worse at 'stressful' times.
Back to Aveeno products, I read recently in the Sunday Times that dermatology patients in a health trust in the north east of England had recently declared Aveeno cream the most effective moisturiser for dry skin problems. My local chemist had a leaflet the other day advertising Aveeno cream with menthol - which should be especially good for relief of itching. Unfortunately they are having problems getting it from the wholesaler, but if they do, I'll post my comments on it!
...and did you know that if you were a PN patient in Germany, you'd probably get holidays at the Dead Sea prescribed for you at no cost to you! The Germans clearly recognise the healing properties of sea and sun!
Hi all,
I've also diagnosed with Prurigo nodularis by my dermatologist, it's been going on & off for over 2 years. I've been thinking what I get is "normal eczema", it's like dry skin & make u feel itchy & scratch at first. Have tried many different methods to treat but all failed. After months & months of development, it becomes to what it's like right now. When it flares up, the itchness just makes me crazy & totally affects my sleep, needless to say, my work as well 
The most effective way to me so far is the Cryotherapy by the dermatologist. It uses the liquid nitrogen to "kill" the inflammation. In my case, it usually takes me 2-3 times to treat the inflammed patch.
Since the skin is so dry, I have to keep on moisturising whenever & wherever I feel itchy. The most effective moisturising cream to me so far absorbs into the skin quickly & I can see the cracky flaky dry skin just heals instantly.
Btw, I'm experimenting to use a DIY mask to soothe the inflammation. It's a mixture of turmeric, plain yoghurt & honey. I used it last night & already can see the red patch is lessen today.
Hope my information is useful to all of you.
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Hi Cassandra,
I've also after many years just been diagnosed with prurigo & start UV light treatment tomorrow x3 each week for 6 weeks, which is difficult for me with my jobs.
I've tried everything like bio oil etc but my dermatologist also gave me an ointment called Synalar which I've inly had for a month at the most & already myself & my husband can see a difference, using it every day after a shower it's not faded them completely but has definitely faded them to what it looked like before.
Please don't give up, I was about to as I once saw dermatologist who did tests but even after a year I hadn't had the results. so my GP re-reffered me back to them this time I saw a different dermatologist who diagnosed it within minutes. he gave me synalar ointment although it can also come as a cream, but my puppy would try to licker it off!! It's not faded completely but it is a lot better than it was before. I've also got to have UV light treatment x3 a week for 6 weeks.
But if it'll help I'll do it.
Hi i to have suffered from NP for 7 years and have tried everything from light treatment, tar bandages, cyclosporine which makes you feel so ill had to stop. Then my GP asked my consultant who treats my Ulcerative Colitis if he could help as my dermetologist said he could do no more. I started on 50mg of Mercaptopurine 13 mths ago and it really does help with the itch and half of my nodules have gone. I aslo take 1 200mg Mauka Honey 16 + capsule a day and this has also helped. I also read 5 months ago that Cryotherapy works by freezing the nodules so I asked my dermatologist to have this done, the result was I had 3 frozen and they have completely gone. The freezing stings for about an hour then it is fine it goes a bit weepy bot just keep them covered til they scab over. I don't know if this is of any help but when I foun this site I felt the need to share it if it will help anyone.
Reading what you shared here gives me hope. I am really suffering.
Hello,
As I read your post I felt a gradual increase in my emotions... The tears rolled down my face as I read that your PN has disappeared....
I am going to re read your post and look specifically at what you say.
I have not given up but sometimes I feel I am on my own and have to accept where I am with this awful skin condition !!
I have tried all the suggestions made by my doctor who specialises in skin....I soon realised he was not a consultant and could do nothing further for me.
I have asked to see a consultant on the NHS and am awaiting an appointment.
Thank you for sharing,
jinny
My name ist Manuel, I am From Spain. I am suffering from PN for four years. A live in the Canarý Island and I am going to tell you my experience about PN
Sun and Sea relieve the problem of PN but it doesnt finish with it.
Aloevera is good but is not strong enough
Cryotherapy by the dermatologist. It uses the liquid nitrogen to "kill" the inflammation. But the nodules comeback
-The best results I got it was with The followings -Doctor´s prescripcion:-
PREDNISONA: (I am 70 years old and a weight 85 Kl.)
40mg a day (in one dose) for one week
30mg a day (in one dose) for one week
20mg. a day (in one dose)for three week
10mg a day (in one dose) for weeks - it depends on the results
Moisture
Celecrem 1mg/g (betametasona -valerato)
Clavate 0.5mg (proolonato)
Applied some cream over the nodules cover it with a tiny piece of plastic and cover all with adhisive tape . Do this once a day
The itching improves with
-Wash all the area with vinegar : 50% Vinager 50% water it helps
-Capsicin 0,75 mg/g this cream burns but avoid the itching, but it doesnt cure
I feel much better
Good Luck to all of you
Best regards
Manuel
Hi Manuel,
Thank you for you most detailed post.
I am on my way to trying some of the things you suggest but have not heard of some of them....
Isn't it a shame that we all search in the dark for solutions to this awful skin condition yet rarely do you hear of successes....
I shall persevere and wish you well.
Best wishes
Jinny
Hi All,....
I AM ALMOST AFRAID TO WRITE THIS..... but.... I am going to do it because IF it is not a miracle...
I want to share it with all those people have had to suffer for so long.
I have been experimenting with different ideas regarding my PRURIGO NODULARIS.
After nearly 2 years of pulling my hair out, I am no longer ....ITCHING.
I just cannot believe it.
It is a MIRACLE, surely.
Five days ago, I started a new regime and I have stopped itching after just 4 days.
I am drinking stabilised Aloe juice in the morning and putting stabilised Aloe gel on my skin twice a day and more if I remember.
THAT's IT
Good luck all and private message me if you wish to discuss it further.
Regards
Jinny
Hi Cassandra!
I have had prurigo nodularis for 8 years. I just found out what it is this week because the Dermatologist wrote what it was in the file, but did not tell me!
I am into natural cures. I am using cayenne pepper in olive oil. It is doing a great job of cleaning my face up. It gets so bad sometimes... Cayenne kills bacterial infections and fixes your skin. The redness goes away. Be careful applying it near the eyes. I have gotten it into my eye three times and it hurts a lot, but the pain goes away. Cayenne will not damage your cells--just clean them.
You can take aloe gel and it will also sooth your skin, but without the heat. Leaving it on overnight is especially helpful!
Hi Guest!
Capsaicin in just cayenne pepper. You can put cayenne pepper in water and sip it during the day. I made my own extract by putting it in vodka for 6 weeks. I put a few drops in water--as much as I can stand. It will help clean your veins and improve your circulation, which should promote healing. Sometimes I put the extract on the nodule because the alcohol should kill any infection.
Drinking halthi/curcumin in milk also decreases swelling as this is an auto-immune dis-ease.
WoW Wendy, that sounds scary. I have so many nods to heal it would take for ever. What I am doing is more Natural. I am using the inside of a banana skin on my face to get rid of the itchiness. It feels great! I read a story about a chinese girl who was allergic to mosquitos and someone said that it helps prurigo nodularis. It softens the nod.
I am taking Ledum 200x, the homeopathic medicine, because a homeopath's wife was bit by a mosquito (80% of cases start that way), so she went to many doctors looking for a cure, but she did not find one. The husband finally decided to treat her based on the onset clue that it originated with an insect bite. The prescription is Ledum 200 every other day. It may take a long time to clear, depending on the extent, but God promises us that there is a cure for every illness.
I will let you know if I see improvements.
Yes, Jinny23, I think the only reprieve I had was with aloe as a topical while taking Lachesis 200 (homeopathy).
I drank gallons of the juice from the store and it did nothing. But, when I got the aloe leaf from the store, I cut out the gel and ate it in shakes and by itself (sorry, desperation drives us) and that helped a lot. I think it took a lot longer than 4 days. Good for you. You are uplifting us with hope! But mine came back...
Hi I have had PN for about 4 years and it drives you crazy when it itches. I want to know where to get the aloe juice and the aloe gel and how much of the juice do you drink in the morning. Also is this all you did? Thank you.