Does anyone know what causes NP as ju... - Nodular Prurigo I...

Nodular Prurigo International

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Does anyone know what causes NP as just been diagnosed with condition?

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meeson
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alex01 profile image
alex01

having had this condition for over 5 years I have been unable to find the cause nor have I been able to find anything that alleviates this problem. sorry but as far as I have been trying to find anything that helps. Prednisone will stop the itching but you can not take it long term. Jim

markhp profile image
markhp

Hi Meeson,

I don't really think anyone knows exactly, but it is probably best considered a focal point of eczema that itches, so is scratched, which makes it worse, and gradually becomes a firm itchy nodule. To solve the problem, you need to stop scratching it, but this is difficult to do because it itches! Therein lies the problem! To help NP, you need to find ways that work for you. Moisturising (with your preferred moisturiser) is very important at least 4 x daily. Using Dermovate (super potent prescribed steroid) accurately applied 2 x daily about 1/2 hour after moisturising NP lesions (until gone flat and non itchy, then stick to moisturising alone). This will work for many patients, if you are disciplined enough! If you have a few NP lesions of a reasonable size, cutting bits of Haelan tape to apply to nodules can help some patients (a prescribed sticky tape impregnated with steroid). Injecting steroid into each nodule can be successful for other patients. Occluding the nodules with a dressing or bandage of some sort helps by reducing the trauma of scratching, as well as keeping creams in place, but here you would only cream up 2 x daily for practical reasons. A great system of this sort for the lower legs is the use of Zipzocs with a blue line Tubifast cut to length over. These your GP can prescribe also.

The condition of NP can be chronic and last for years in patients, but if you get an interested GP or a Dermatologist (preferable in my experience), and you work through some of the above, I am certain you will find a solution. If not, your dermatologist will know of other systemic treatments to consider other than long term steroids, which can be effective, but potentially associated with long term side effects. Best to discuss this with your GP or dermatologist as they can guide, reassess treatment effects, prescribe appropriate things to try, and hopefully solve your problem for you. Be reassured, there is a way to solve your problem, but the difficult thing is that different things work differently in different patients, so you need to find what works for you, and this can take time. As a dermatologist myself, I have had many patients with this condition, so I do know how frustrating this can be for the patient, let alone me, in trying yo find the solution for them! I have not failed to eventually find a solution for a patient yet, although it can take time and the NP can be a chronic relapsing and remitting disorder in some! Good luck!

meeson profile image
meeson in reply to markhp

Thank you for the info Markhp

meg233 profile image
meg233

mine was started by a insect bite . in fact bite off midges that got infected antibotics cleared it up but then all I done since was to itch and scratch .but have found a rountine of creams and good advice off a dr I haave been clear till this week and I got stressed out and started itching and scratching but I done what I normal don when flares up and its subsiding again

Anelissa profile image
Anelissa

And still thinking what to tell you, cos this is such a widely misunderstood disease, and only raises more questions instead of giving useful answers. January 2007, first indication blood test tells of inflammation,supposed to be mild but suggests to follow check connective tissue disease but no doctor so helpful until i saw Drs 5 and 6. Public not private health. Nobody rushed to find cause and many wrong verdicts initially.

My skin always beautiful until three years ago. Now look like pickled cucumber. General health good, but was diagnosed with gall stones last year and various cysts still to investigate. Jury still out on which one of two spiders may have bitten me - not even sure the bite preceded december 2007 cos only one lump on ankle at first, an itchy and painful sore that never quite healed, i blamed shoe sandal strap for continual itch and not even worried that much, as it just kept forming lump of either keratine or calcium which grew very hard over two years and doc cut it off and histology confirmed insect in particular spider bite. Lots more to write and will write second installment, but for now just to add - most creams useless - but a mentholated one i found best, i picked and still pick. In fact i read it is necessary for the slough to be picked away before any healing can occur. To help the skin, try use Taylors ayrton anti septic cream, not just for relief but helps skin repair, even tho it can't eliminate the source of the problem and the healing of every sore can take up to 18 months as typically the wound doesn't heal properly because it is unable to . I think if my hands were bound and unable to scratch i would already have gone insane. I did try lots of potions lotions and several courses both bie assisting the doctors and specialists with proving that both bo are not going to cure this Prurigo. I found there to be an overall drying of the wounds on taking Doxycyclei for 140pwj weeks.

It saw reduction of slough but eventually the sores were just as painful cos skin and lumps built harder and drier than before. I stopped meds couple weeks ago and now the wound slightly more moist again. New node coming up one per fortnight as against three to four per week twelve months ago .

Limbs mostly affected, but even had in palms of hands and and bottom and couple on chest and belly. None on back but lots on shoulders and arms. Also some joint rain. And frequent warming of body like six seven times a day. Only during taking doxycyclein e the warming of body disappeared, but not the once a week diarrhea. Still get very mild belly discomfort also carry a bit more weight last couple years, less motivated, avoiding sun exposure. Haveonly last year identified the one spider which likely bit me on ankle, it is called white tailed spider. The other spider looked same shape but small and albino.

I looked up to see one spiders near window sill and one one I discovered as I got up and shook the sheet I was laying on. already my ankle had a burning sensation and as yet more painful than itchy but only itchy and annoying the next day.

Little by little it got worse from my scratching it, until i noticed it was a wound that would not heal until eventually it turned into a very hard lump.

Hard to imagine spider from seven eight years bin caused this. But my blood is ok, serious issue comes to light.

But still got 77 connectitvery tissue diseases to read up on .and issues whether it it be excessive kera tin, or creatine enzyme re excess calcium production, or something wrong withcollagen, perhaps some auto immune disease nobody yet diagnosed properly or rare like DM.

For a long while my body very acidic, even the bathwater became very acidic. Maybe leaked se bum i thought. Nothing i know. It is all guesswork.

But also nerve tingle quite often when lower arm was plastered with sores, but both arms simultaneous - i also found the sores come up symmetrically quite often, but one or the other side is always a little bit worse than the other, and that switches. Not just one side always the worst. I have only in the last three months had a half dozen nodes on my head, have had a dozen around the nape of neck. But metres as bad on the head. Guess its because no flesh. The fleshy areas take so long to heal. Disaster area was left thigh where biopsy

was performed.

Sorry about the rushed job,

maybe can think of some more things to write another time.

A ne Li

meeson profile image
meeson in reply to Anelissa

Glad my query has stopped you scratching for at least half hour!! Thanks for sharing your thoughts and experiences.

Anelissa profile image
Anelissa in reply to meeson

well, actually I was typing on my cell phone with one hand, and the other hand free to pick at the lesions. How have you been? Any better? I'm around 90 percent improved from last year.

Anelissa profile image
Anelissa in reply to meeson

Experienced a major leap of improvement from taking Valtrex for the first 3 of 4 months. I had to stop taking it cos it was starting to revert and come back stronger. I stopped taking Vatrex and condition has stabilised but not disappeared. I was taking only small doses of Valtrex and still saw a major improvement already after 14 days of taking this prescription drug. It's meant to treat cold sores, and is considered fairly harmless. I'm thinking of having another shot at it cos the brandy nips I trialled for 8 days didn't result in clearing away the last few NP affected spots, though it didn't make it any worse. I actually think it helped to lift some of the keratinose clumps that form under the skin. So the alcohol may have a drying effect on the slough, turning the slough to form keratin clumps more quickly, and as you know, pain is always associated with theses nodules, particularly as they also involve hair follicle shaft, that become clogged with the sick keratin. At least I reckon it's mainly keratin, though it could also be a conglomerate of keratin, collagen, debris including some fat.

So yeah, I'm still not certain how to cure this disease, but I think we can rule out psychiatric and bacterial. It's either viral (akin to shingles) or some kind of fungal thing that might exist in an intestine or organ (liver or pancreas?) causing seepage of acid to different parts of the body, particularly where muscle tissue is plentiful. I've read something on lactic acid, with the excess lactate in the muscle causing a plaque like rash. I found that info on internet. Just google lactate muscle, lactic acid, plaque and you'll get to it. I still haven't worked out how for a good deal of the time, the rash comes up symmetrically on the body, meaning, if one side of face is affected, then so will be the other one. Mine didn't always occur simultaneously, but definitely I've had roughly the same quantity of lesions on both flanks of my body. First the right shoulder and right upper arm went off, and several months later the left shoulder and arm followed suit. The degree of skin damage shifted back n forth a couple of times, but now I reckon the left shoulder took the greater blow, with many deep seated clumps of keratin needing to be excoriated. NB. Contrary to a couple of dermatologists I've heard on this matter, WE DO NOT EXCORIATE the SKIN. NP sufferers are trying to dig out the hardened mass, which in first instance does happen to leak a small amount of slough, but as the slough dries up quite fast when exposed to the air after scratching a lesion, and so the damn lumps keep on forming because the muscle holds this blasted lactate that turns the keratin into clumps, and this process continues for months, where the muscle is saturated with this acid. We all know that it only takes a small lump to form under the skin, and it burns and it pains like it is a monstrous thing, but when we pick at it, only tiny tiny hard bits come away. The hard bits often look like skin, but those are really hardened connective tissue that is also affected by the keratin resin, and turn hard. Elsewhere I've read that medical scientists have recently (2015) observed that as the skin areas where NP sufferes do their dose of daily picking, the skin forms isn't normal skin, but its rather more like Lichen Simplex.

Anelissa profile image
Anelissa

Eat well, sleep well, and gently pick to get some relief- but be sure to apply an anti septic cream, the one i suggested is excellent. For the most part, it isn't skin that is picked, it is some excess body secretion that shouldn't be leaking. It itches like hell and when the hard lump gets picked at, it does tend to rip the surrounding skin plus the warped irregular mush that is directly under the lump also isn't skin, it is sick tissue, and i personally like to pull away any pick skin, no different to author out the eyes on a potato, as there do not belong on there, so get rid of the rubbish. And if someone finds an anti inflammatory pill that can be taken for months without causing stomach ulcer i may try that. But so far i can rule out cortisone cream - lasts about half hour in stopping itch but not helping to repair skin.

Anelissa profile image
Anelissa

Sulphur powder mixed into apple sauce for a snack.Feel sorry for some who believe view got mites crawling under their skin, it is just nerve tingles but it really does feel like mites crawling under skin. Need to be strong, keep cool draw on all your favourite interests and at least attempt to distract yourself into fine mood. At my worst i scratched and picked 12 hours in 24. Every two minutes. Quickly began reaching for stuff to put on eat or drink. Even ate sulphur powder and dabbed sulphur on wounds. Sulphur powder, don't eat more than a tea spoon per day. Ask your doctor. Mine said no problem .

Anelissa profile image
Anelissa in reply to Anelissa

i discontinued / dispensed with topical application of sulpher shortly afterwards, as I found it only clogs up the pores and the best way to arrest this nodular prurigo is to let air get to it, alcohol rubs and menthol.

RESIST USING CREAMS THAT LEAVE A THICK FILM ON YOUR SKIN, avoid fatty ointment, avoid aqueous creams, cos these facilitate spreading of virus.

Anelissa profile image
Anelissa

SoGood started drinking somevanilla almond milk but also choc almond - maybe the sodium is helping. Belly is better. Maybe the sodium is countering the excess calcium production. The ancients tree to value salt. Modern day still value sea salt. One purpose was to activate thyroid. Alas, wish it were that simple to switch on skin production back to normal.

Anelissa profile image
Anelissa

Love your disease, whilst it doesn't kill you. See an opportunity with every challenge. When i an writing i generally do not pick much - hence the long reply.

elbadavid profile image
elbadavid

I believe the PN is caused by some kind of insect that may have bitten you while walking in the grass or fields. Could be a mosquito, could be any insect. I've had it for over a year and it affected my arms, neck buttocks and legs. You try not to scratch, but the itch is very intense and hard to stop the habit, it's almost a big relief, but of course it makes it worst. I've been to 2 Internists (one has a dermatology license) and 3 dermatologists and I've used every cream, compound medication that they could come up with, but to no avail. I've spent a lot of money because our insurance plan doesn't pay much to help with the cost, but I finally stopped using anything, forced myself to stop scratching and VOILA!!! This is what's working. They are drying up and I will have some white patches from all the scratching, picking and bleeding, but I will find something that should take care of this problem. Medications do not help, Atarax and any anti-itch or depression medications that are being prescribed also do not help, take it from me, I've got the proof of how many places I've visited and how many medications I've taken for over a year. Stop scratching, picking and stop taking all these medications, and it will eventually go away by itself. Has anyone noticed that hair follicles grow where these scabs are? I thought I had folliculitis, but this is part of PN. Good Luck with this, it's the worst problem I've ever encountered with my skin.

scratching profile image
scratching

I find that using emuaid helps

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