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

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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!

[i:5edb71396e]This message was automatically imported from the original Patient Experience[/i:5edb71396e]

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  • Guest
    Guest

    Posted

    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

    • overit4real
      overit4real Guest

      Posted

      Reading what you shared here gives me hope. I am really suffering.
    • jinny23
      jinny23 Guest

      Posted

      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

    • paul47040
      paul47040 jinny23

      Posted

      It brings tears to my eyes to I have had it for 13 years and it has scarred me all over my body I live by the beach and can't enjoy it but these possible healings have given me hope being healed from this would be better than winning the lottery I would love to come out of my solitude box

  • Guest
    Guest

    Posted

    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!

  • robotca
    robotca Guest

    Posted

    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 sad

    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.

    Emis Moderator comment: I have removed product/company/website names as we do not allow repeated posting of these in the forums. If users wish to exchange these details please use the Private Message service.

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

  • StaceyMHeward
    StaceyMHeward Guest

    Posted

    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.

  • wendy27962
    wendy27962 Guest

    Posted

    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.
    • allison44359
      allison44359 wendy27962

      Posted

      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.

  • manuel46
    manuel46 Guest

    Posted

    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

    • jinny23
      jinny23 manuel46

      Posted

      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

    • jinny23
      jinny23

      Posted

      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

    • allison44359
      allison44359 jinny23

      Posted

      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...cry

    • gloria_47874
      gloria_47874 jinny23

      Posted

      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.
    • horseladytoo
      horseladytoo manuel46

      Posted

      Thank you Manuel for your information; I beleive everything you say is true.

      I have had PN for 3 years and have tried at least 100 different cures, including several of the ones you and the others here have mentioned. Most of the things I tried were natural and some were prescriptions. Nothing helped much and some seemed to make the PN worse.

      A very good friend of mine STONGLY suggested Prednisone because it worked for a similar condition he had. I asked one doctor to prescribe it for me but instead he prescribed a useless, expensive ointment. I hate to take ANY medicine but I would be willing to try Prednisone if it really works! The only other choice left, that I haven't tried yet, would be a strong detox.

    • horseladytoo
      horseladytoo jinny23

      Posted

      Hello Jinny,

      I guess I haven't tried enough of the Aloe. It grows in my yard so I'll try it again.

      Thanks!

    • manuel46
      manuel46 horseladytoo

      Posted

      Talk to your doctor about ciclosporina. It works but its too strongm but its works

      Good luck

    • sheri75753
      sheri75753 horseladytoo

      Posted

      I have had PN for over 2 years now.  My family doctor saw that there was no difference for this time I spent with a dermatologist!  She referred me to an Immunologist!  After waiting two weeks for the blood work reports, I HAVE A DIAGNOSIS!  "Perigo Nodularis" is a name dermatologist give to this conditon - it means "itchy Nodules".  All they do is treat the SYMPTOMS not the CAUSE.  This NOT PN!  This is an auto-immune problem in your body in that it is attacking itself!  He immediately put me on Methotrexate, Amytryptolyn, and Folic Acid.  In the three weeks (3 WEEKS) I've been on this, the sores are 2/3 gone and the others are healing and fading!  And believe me - if they itch, I scratch!   Quit wasting your time and money with a dermatologist and get yourself in with an IMMUNOLOGIST!  If you need the name of a good one in TX, let me know!  Good Luck! 

    • carmen70430
      carmen70430 horseladytoo

      Posted

      Prednisone works! I was taking 50 mg a day for 2 wks and am now down to 40 mg for 2 wks. I have seen MAJOR improvement!!
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