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

This is for MarcitaG and everyone else.  I reported my experiences with PN a year or so ago.  Never ran across this website again and didn't know how to get back to it!  I continue to see my Immunologist periodically.  He had me try Gabapentin, but it made me very disoriented and unstable.  Then he put in on 2 Hydroxycholoquine, 10 2.5mg tablets of Methotrexate once a week, 2 Folic Acid (which he had to increase to 3 per day - because I was feeling so tired and exhausted), 2 Amitryptolin, and Fluocinolone Acetonide cream twice a day.  I had to reduce the Amitryptolin to only 1 a day as it dried my mouth and eyes out too much.  He then had me start taking 2 Allegra a day in place of it.  The open running sores have mostly gone away!  I have been pushing to get off the Methotrexate (I don't like the idea of an anti-cancer drug even though the dosage isn't much).  I had backed down to 8 one day a week and then to 6 one day a week.  However, I am breaking out a little more than I had been - guess I should call and report it!  The open lesions aren't nearly as itchy as they originally were and seem to heal up a little faster now.  

The other problem - and someone else mentioned the same thing - is I have it on my scalp - and nothing seems to touch the itching, with the exception of a compounded drug a 2nd dermatologist the Immunologist had me see, prescribed for me.  I had squamous cell carcinoma on my scalp and had Mohs surgery shortly after seeing the first dermatologist.  It kept on bothering and bothering me.  After about 12-15 biopsies on my scalp, they finally found another small place of the cancer and sprayed the H--l out of the spot.  Since then, it continues to bother me, unendingly!  The 2nd dermatologist I saw said she couldn't see anything that would make her think I still had any of the cancer.  She thought all the itching and places on my scalp were trigeminal neuralgia.  She gave me a prescription for Lyrica and told me to see a neurologist.  I decided I didn't want any more doctors involved, giving me more meds that wouldn't do anything and might cause me even more harm. I never filled the Lyrica prescription as I'm sure it would be prohibitively expensive.   She did call in a prescription for a compounded medication for the lesions on my scalp.  From the bottle, it is Amitriptyline/Ketamine/Nal trexone 2% 1% 1%, whatever this is!  The compound was so thick it wouldn't come out of the bottle, so I used Q-Tips to get it out.  Smeared in over the lesions and it was instant relieve!  My scalp just said, "ahhhhh"  However, the stuff flakes off like tiny little feathers as it dries!  The relief was incredible!  I finally got an appointment with (hopefully) a third dermatologist who has some sense!  I liked the second one just fine, but didn't want to have to drive 150 miles one way to get to her!  The new dermatologist is not far from the immunologist and only 50 miles from where I live in Central Texas.  

For anyone interested, the Immunologist's name is Dr. Keith Paull with the Paull Asthma and Allergy Clinic in Bryan/College Station, Texas.  He is very thorough!  

I feel I'm on the right track with this doctor - he said he could get rid of 90% of this and he has!  

Good luck everyone - and LEAVE THE DERMATOLOGISTS ALONE - SEE AN IMMUNOLOGIST!  

PS - especially if you already have an auto-immune disease, you are subject to multiple diseases!  

Hi MarcitaG,

I live between Austin and College Station.  It is about 100-120 miles to Houston from here.  My Immunologist is also an allergy and asthma specialist in Bryan/College Station.  He did have me see a dermatologist in Houston about the cancer part,  Dr. Reana Jogi.  She is board certified in Internal Medicine and Dermatologiy.  I feel that it is counter-productive for me to try to drive to Houston whenever I need a dermatologist - and I'm NOT going back to the first one with whom I wasted two years!  I have an appointment with a dermatologist now in College Station the end of August.  I'm hoping he will have some tricks up his sleeve that will help with this problem with my scalp!  

Thanks.  Sheri  

You already have an autoimmune disease if you have Crohns.  You should be seeing an Immunologist for the 

"so-called" PN as this is also an autoimmune problem!  And it is treatable!  

As I'd posted before. I have PN for 18 years.

Aside from all the treatments I'd have, next week I will be starting a new and promising one.

Is a systemic treatment that entails:

- Methotrexate. Once a week

&

- UVB. 2 to 3 times a week .

The time table for the treatment initially is 6 to 12 month.

The location of said treatment is: Cleveland Clinic.

My insurance covers the medication, but not the UVB lights. I will have to finance that part.

I would like to post here the progress of my treatment. But if I can't do it periodically, feel free to contact me.

Wish me luck. Hopefully and all things considered, this will be the ONE!

As I'd posted before. I have PN for 18 years.

Aside from all the treatments I'd have, next week I will be starting a new and promising one.

Is a systemic treatment that entails:

- Methotrexate. Once a week

&

- UVB. 2 to 3 times a week .

The time table for the treatment initially is 6 to 12 month.

The location of said treatment is: Cleveland Clinic.

My insurance covers the medication, but not the UVB lights. I will have to finance that part.

I would like to post here the progress of my treatment. But if I can't do it periodically, feel free to contact me.

Wish me luck. Hopefully and all things considered, this will be the ONE!

i have had it for 14 months. essential oil oregano got rid of it

starting last thursday night. not a single itch. they are

leaving my body.

2 tablespoons carrier oil (any oil you have)

12 drops essential oil oregano.

i feel great!!!!!!!!!!!!