PN usually begins as one or two small itchy bumps that resemble insect bites. In fact, they often are insect bites.  Over a period of time the bumps spread and continue to itch. The itching is the most identifying feature, because it is a very intense "deep down" itch that is impossible to ignore. Other hallmarks of PN are failure of lesions to heal, especially when other cuts or sores heal normally; and a pattern of spreading from the ankles up the leg or from the wrists up the arm.

Although my story sounds critical of doctors, it is not my intent to bash doctors in general or to discourage anyone from seeking treatment from a qualified physician. I go into detail about my experience with doctors to highlight the fact that PN is a confounding and frustrating condition for patients AND their doctors. In many cases the physicians simply did not have the time to research PN and knew little about it. In all cases these were compassionate and caring doctors, who were simply doing the best they could with the knowledge (and time) they had.

The first dermatologist basically told me that I was doing it to myself. He didn't diagnose PN, but said that I would simply have to stop scratching. This made me absolutely furious because I knew I was NOT doing this on purpose. He gave me some Prednisone for a couple of weeks which did help, but as soon as I stopped taking the steroids the itching came back. Because I did NOT scratch on the Prednisone, he seemed to take it a little more seriously (like maybe I wasn't doing it on purpose), but still could not figure out what it was. He did a scrape biopsy from a bump on my arm which didn't show anything besides possible allergic reaction. (Later I would find out this was the wrong type of biopsy to do.) The diagnosis at that time was "dermatitis." In the meantime I kept getting more and more itching bumps.

The first doctor moved away and I saw at least 3 more docs at the same clinic. By this time I looked like I had a bad case of chicken pox: about 50 - 60 angry red sores, some inflamed. They all gave me a lecture about the "itch-scratch" cycle, i.e., this is your fault because you won't stop scratching.  One physician's assistant told me to try rubbing Vaseline on my skin, maybe it was just dry skin! Lots of creams, ointments, soaps, steroids and antihistamines - even RetinA - followed, all to no avail. Oatmeal bath soaks helped temporarily. I saw one more doc at the clinic and then decided to go to an allergist.

I found a great allergist who was surprised that the clinic docs had never drawn any blood on me because he said my symptoms could be indicative of lupus. He tested me for lupus and also did skin patch tests for environmental stuff. No sign of lupus but he found that I'm allergic to dust mites, lots of pollens and grasses, and also sensitive to cat dander (we have 3 cats). It wasn't felt that the allergies were necessarily causing the skin condition, but the allergist recommended a two-year course of allergy shots, which I reluctantly agreed to. At this point I also spent a lot of money on allergy products for my home: mattress and pillow covers, special filters, anti-dander bath for the cats. I stuck with the injections (no pun intended) until I was taken off of antihistamines, at which time I could not handle the allergy shots.  The allergist recommended another dermatologist, and I started seeing her (Dr. H.) in summer of 1999.

When she first saw my lesions, Dr. H. looked alarmed. She asked me if anyone had done a biopsy, and I told her about the scraping they took. She said they really needed to do a deeper "punch" biopsy because my skin condition looked similar to "cutaneous T cell lymphoma."  She did a punch biopsy and also injected steroids directly into about 40 of the lesions. The next 5 days were hell, waiting for the biopsy results. Finally the results came, and showed no lymphoma. Dr. H. said that sometimes this type of skin condition (still no name) could be caused by medications, including antihistamines. However, I have only been able to find a couple of scientific papers to support this theory. (See PubMed here.) She advised me to stop taking all non-essential meds. I was taking: Benadryl at night (12.5 - 25mg), Zoloft 50mg for anxiety and depression (caused largely by the skin condition), Verapamil 120 mg for irregular heartbeat (a long-time condition). I was afraid to stop the cardiac med but I stopped the Zoloft and antihistamines. Soon I found that I couldn't handle the allergy shots without Benadryl. I had to quit getting the shots because the itching after injections was too much. In the meantime I grew more itchy, and very anxious and depressed without the Zoloft! I called the doc who had put me on the Zoloft and we met to talk about different meds. I ended up on Effexor which also helped, but he never felt the bumps were due to antidepressants or any other meds.

In the meantime Dr. H. continued to inject my bumps. A typical session would include 30-40 painful injections directly into the lesions. Some of them did stop itching and heal, but it seemed random. After another month or so, Dr. H. suggested I try UVA light treatments. (I was very unhappy signing the permission paper warning me I could get cancer from this!)  I drove 20 miles each way twice a week and received the light treatments for 10 weeks, just about the whole summer of '99. I got a nice tan but no real help for the bumps. In the meantime I was getting more and more depressed. At this point I would not wear short sleeves or short pants because of being self-conscious of my skin. It was pretty miserable going all summer in Atlanta with long sleeves and pants. Plus the constant itching, scratching, bleeding sores. It became normal to wake up in the morning with blood on the sheets from my scratching. Very depressing!

I really liked Dr. H., but felt like we were at another dead end. Another dermatologist was recommended to me, Dr. O., whom I started seeing in the fall of '99.  He did not feel that my problem was from meds, especially since stopping meds didn't improve my condition, so the ban on medications was lifted. He gave me a steroid injection in the hip which was supposed to stop the itching for 2-3 weeks but had very little effect. He tried injecting the sores directly like Dr. H., using cryosurgery to freeze them, and many different creams, soaps, etc. All had randomly successful or unsuccessful results. Dr. O. also did another biopsy because he did not think the one with Dr. H. had been read properly (it was read by a dermatologist and not a pathologist). He also asked if I'd ever had a stomach ulcer, and I said yes. He told me that ulcers are caused by helicobacter pylori, which is a bacteria that causes stomach ulcers. The theory is, if you had stomach ulcers in the past the bacteria can lie dormant for many years and then your body tries to excrete it through the skin. He felt I had a skin condition that is often linked to h. pylori infection: PRURIGO NODULARIS (PN). Having a name for something that has affected my life so much was very important for me. Dr. O. put me on a massive dose of antibiotics: Keflex 3,000 mg a day for two weeks. The first day I got horribly ill, with debilitating diarrhea and weakness. Then my body adjusted and I was OK. A few weeks later it was felt I should go another two weeks on the antibiotics -- another first day in bed from weakness and diarrhea. This did help the sores heal, but as soon as I stopped taking the antibiotics they flared up again.

A colleague at work told me about "Dr. Cindy," a Chinese herbal doctor. I went to see her at the end of 1999. She agreed that the lesions could be from a toxin, and put me on detoxifying herbal medicine. This consisted of "tea" made from many herbs which she prescribed specifically for me. I cooked the herbs in 4 cups of water, boiled down to 1 cup, and drank it. It was very strong, and tasted like a combination of dirt, spinach and vomit. I drank this tea twice a day for several weeks, then once a day. In addition, she gave me bags of herbal wash which I also heated and sponged onto my skin. This regimen helped heal the infected bumps, but was quite expensive -- about $60 a week -- and my insurance will not cover alternative medicine. Soon I couldn't afford Dr. Cindy anymore, except occasionally. When I could afford it I used the tea and wash, which helped a lot of the lesions to heal. Dr. Cindy also took me off chocolate (horrors!), cheese, seafood and beef, to make sure it is not a food allergy. (I have since gone back to the allergist and had skin patch tests for food allergies, which were negative.)  I have also tried de-tox tea, milk thistle infusion, and Gator skin cream, which helped a little bit. I spend quite a bit of time on the internet looking for information about PN (there are quite a few medical photos, etc.). I have received a few emails from other people with PN*, which is wonderful. It really helps to know you're not the only one with it!  Dr. O. said he has only one other patient with it, and only 5 nodules on the scalp (as opposed to my 100+ at this point) and he referred me to "Dr. S" whom I started seeing recently (in early 2000).  The good news is that Dr. S has *nine* other patients with PN or PN-like symptoms and has been successful with his treatments.  I will update as I receive treatments.

(*As of November 2007 - over 5500 emails and 170,000 hits on this web site.)

Other symptoms: My skin has become very fragile and breaks easily. Even a slight scratch from playing with my child or bumping against something will cause an open cut. I bruise extremely easily, to the point that rubbing over the itchy area (instead of scratching at it), even lightly, causes bruising. I wonder if this is from the steroids, but have never had a clear answer on that. My hair falls out in handfuls after I shampoo - possibly from one of the meds.

Here is what I have culled from the internet: sometimes thalidomide is used to treat PN -- not something I would do myself (never say never -- see updates, below). Strong opiates can be used to keep the patient in a dopey state so they won't scratch (not an option for me). The theory of heliobacter/past stomach ulcers is gaining credibility, with a well-known Emory University dermatologist having success with Helidac treatment. There is a prescription vitamin D3 ointment that helps a little.  I quit taking the cardiac med but it hasn't made any difference. (I underwent a surgical procedure to correct the irregular heartbeat, so was able to stop the med).

My regimen (Feb. 2000) is: intermittent prednisone shots OR 20mg prednisone every other day; 5-10 mg Zyrtec OR Allegra in the evening; 25 mg Benadryl at bedtime; Allegra in the a.m.if it's really itchy -- this one does not cause drowsiness; Ultravate steroidal ointment prn; oatmeal soaks (to save money, use 1/2 cup regular uncooked oatmeal in a thin washcloth tied with a rubber band; swish in the tub); Eckerd oatmeal lotion or Kiss My Face body lotion; Dial antibacterial moisturing soap for sensitive skin (very good for healing surface infections); oatmeal soap every other day; I ONLY shave my legs with Kiss My Face antibacterial shave cream and not more than once a week (shaving can cut open lesions, so be careful!); and 50 mg Zoloft a day. I also dab at any open lesions with hydrogen peroxide or alcohol in the evening, and use Neosporin on inflamed areas.  I wipe the cats down with the Allerpet once a week. (It should be noted that I've never had any recognizable symptoms of allergy to my cats, like sneezing, runny eyes, etc.) This regimen has helped me keep my sanity. I am over the stage of lying awake at night mulling over WHAT could be causing it and am trying to focus on healing. I also recently started seeing a hypnotherapist to help with the itch-scratch cycle; I figure behavior modification can't hurt at this point.

If you are a physician reading this, I hope it will help you feel compassion toward your PN patients. I know it must be frustrating for you too, when nothing seems to work for a patient.
 

The most important thing I can say to another person with PN is: It is not your fault! You are not crazy, and you are not doing this to yourself. Since a lot is not known about PN, you have to be your own advocate! I hope we can share information, anecdotes and helpful advice with each other. Scroll down to email me.

                PN on the hands and wrists:

 PN on the legs.

Click here to go back up:#up
 

UPDATE! September, 2000:

FIRST OF ALL, I want to thank everyone who has emailed me. Quite a few more than I expected! There are many of us PN sufferers out there. (I don't like to use the word "sufferer" because it automatically puts one in the victim role: any suggestions for other words? patients? ) I have heard from women and men in the US, Canada and the UK. I hope to have a discussion board in the future (see below), but for now please keep emailing me. I will share your suggestions on this web site.

Some recent comments and suggestions:
-Joanne P.: "Silvadene cream has been almost miraculous." Joanne also pointed out that prolonged steroid use can cause a little-known complication called osteonecrosis (dead bone).
-Bob B.: "Stumbled upon this site while doing some more searching following my yearly physical and another lecture from my G.P. (have abandoned dermatologists)..."
-Mari S. (in Scotland, where it's called NP instead of PN): "Recent blood tests have shown that I have a problem with yeast (candida albicans) and so I am attempting a yeast free diet."
-Ron S.: "I'd be glad to exchange information with you since you're one of the few resources I've found.
-Kevin W: "Doctors just don't seem to have experience of PN and suggest all sorts of silly diagnoses.  My first ... specialist said I had bed bugs and should put my mattress out in the sun...."
-Maleea B: "How comforting...sort of...to read your article....  My natural healer person told me to avoid gluten.  hmmmmm   I get real nervous when I keep reading about HIV and immune system problems.  sigh."
A special thanks to Jennifer H., who has shared so much with me about her personal PN story.

I have some very good news: started Dapsone about 4 weeks ago and it is really helping. This is helping more than anything I have done so far. The older lesions on my arms are nearly GONE! The nodules on my legs and elsewhere are much improved. I have another dermatology appointment on September 15, at which time my dose (currently 50 mg/day) may be increased. The down side is having to get blood drawn for a CBC every two weeks - but a small price to pay. Apparently Dapsone can cause anemia in some, thus the blood work. Dapsone is an antibiotic that is used specifically for skin infections: most notably, leprosy.  If you have not discussed Dapsone with your attending physician, please do so!

During the summer I also took tanning treatments 3 times a week. This was after going to the beach in June and realizing that the sun and salt water helped my PN quite a bit. So I tried to duplicate the effect: tanning bed and a spray bottle of salt water, which I sprayed on as I tanned. It is MUCH cheaper than the UV treatments through the clinic -- about $15/each -- as compared to about $3/each at the hair-nails-tanning salon. I can't say the result was miraculous but it did lessen the appearance of the lesions. I actually wore a bathing suit on the beach (!) and wore short sleeved shirts this summer (with a little make-up dabbed on the reddish spots). I quit the tanning after about 12 sessions, but am still taking a sea-salt bath a few times a week. This seems to help heal any open lesions. I am completely off the prednisone, and only taking Benadryl when needed. Luckily, my hair has stopped falling out and my easily-bruised skin condition is also better. Hmmm, doesn't it seem that sometimes the cure is worse than the illness?!

There is still some itching, but because my skin isn't tearing open so easily any more, it is not as damaging when I scratch. I just now had an itching fit on my left arm and jumped up to rub some triamcinolone cream on it! I honestly don't know how much this cream helps, but it makes me feel better to jump up and do something about it. I am just thankful that the lesions aren't as horridly bloody and open as before, and really are healing now.

This takes me to another whole angle on this PN thing: the self-consciousness it gives one. How many out there say "to heck with it" and wear short sleeves or short pants anyway? How many use make-up to cover the bumps? Or just wear long sleeves and trousers all the time?  Most of the email I see indicates that women are more apt to cover up -- but the men don't seem to comment on it. Maybe because it is more typical for men to wear long sleeves/pants anyway? Would love to hear some comments on this issue.

To wind up this update, I'll mention that there have been some rumblings in the research world about PN possibly being an autoimmune disease. I am very interested in this theory and will follow all the mail and news reports possible. Hopefully some productive research is being done at this very moment that will benefit us all!

UPDATE January 2001
First of all, Happy New Year! I hope that 2001 is a great year for you.

A lot of people have asked me about this list, how many are on it, etc. To date, I have had about 30 people email me who have PN and/or have seen the web site. The site has had about 600 hits since March 2000. (As of August 2001 -- over 400 emails and 4,000 hits.)

I answer each email I get personally. It is very important to me to let people know they are not alone with this thing. I am just one person doing this, not a company, nor am I selling anything. And, of course, it has been so helpful for me to hear from all of you.

Dapsone update: The Dapsone worked for a while by slowing down the PN. I got fewer new spots and the established ones bled much less. I had to get blood drawn every 2 weeks because Dapsone can cause severe anemia. After 12 weeks I reached a plateau so my doc took me off.  Then we tried a 2 week course of Diflucan, an antifungal, just for the heck of it. It actually did seem to help a little, especially with itching around my toenails. I suspect that I had mild athlete's foot which got cured!

Two new things I've tried: Atarax for itching has been a major help. Especially for nighttime scratching. I have actually slept through the night with this stuff, with no blood under the nails* in the morning. Also, Kenalog spray is very good. But even with my Rx plan it is $20 per can (which lasts one day!). I am currently trying to get a 3-month supply through my Rx plan which would be much lower in cost.

I had an appointment on 01/08/01 with my dermatologist. In response to "what is this new miracle cure for eczema/itching I keep reading about?" he said it is not effective for PN. Period. He is also looking at PN from a psychiatric/dermatology angle. I understand the neurologic connection, but I have mixed feelings about it. He wants me to increase my Zoloft from 50 mg a day to 150 mg a day. I have agreed to try this, only because I am willing to try anything that won't kill me. But I do it with reservations.... Recent studies have indicated that SSRI (antidepressant) drugs greatly reduce the "itch-scratch cyle" and therefore facilitates healing.  Mainly this info comes from a doc here in Atlanta who has a psychiatric-dermatology clinic. I realize that the two branches of medicine both deal with neurology, but I still have a big chip on my shoulder when anyone suggests that PN is a "psychiatric" disorder. Of course it is not. Although some patients report developing PN shortly after a stressful or tramatic event, most do not. Symptoms of PN are exacerbated by stress, but so is everything else.

Again, remember that some things work for me and not for you. That is one of the frustrating features of PN, that there is no simple "cure." You have to just keep trying different things until you find the right combination that works for you. As I've said before, at first I insisted on only "natural" things to try, now I am willing to try almost anything!

*Nails. It goes without saying that your nails should be clipped to the quick. I know this may be difficult for some of the women but it is essential to do it. Otherwise you can spread infection -- and will never stop bleeding! BUT you should also clip your toenails very short. I have found that I can use my toenails while lying in bed to scratch at my legs!  ;-}

And last but not least, find something that helps you keep a positive attitude. I read a meditation book every morning that is from a 12-step program (Each Day a New Beginning). It really helps me keep things in perspective.

UPDATE MAY 2001
The increased Zoloft did nothing for the itch/scratch cycle. After two months I tapered back down to 50 mg. I want to taper off Zoloft completely because I am not convinced that SSRIs and PN isn't connected.  I am seeing a new internist this month and hope she will be knowledgeable about this.

Those of you following the Message Board will be familiar with Helidac therapy for PN. This is a medication for ulcers; there has been some research that shows a correlation between helicobacter pylori (h. pylori) and PN. Although my derm doc had cured at least one patient with Helidac, he was reluctant to try it on me for a long time. I finally convinced him and started the first 14 days in March. By the 10th day my legs were almost completely healed ~ 80%. My arms were about 50% healed and I wanted to take another 14 days. The Rx refill request was refused by phone; but when I went in one week after the Helidac therapy he was so impressed he did give me another Rx for it -- plus a refill.

I finished the Helidac therapy on April 30. The results: the first 14 day treatment had the most dramatic effect. The subsequent 28 days of therapy effected about a 10% additional improvement. Though I am pleased that so many of the PN lesions healed, I have to wonder why they didn't all heal?  I am now taking OTC anti-yeast preparation (Candida Forte) and OTC natural hormone replacement (Estrotone). I am 42 y/o and "perimenopausal" but there is probably (?) no connection with PN.  Too many males have it! Please visist the PN Message Board for more on Helidac and many other treatment discussions.

Welcome to many new "PN pals" -- from all over the world!  I have yet to hear from a healthcare professional about PN -- but there's always hope!

A special thanks to  Evan L. (whose wife has PN) for compiling this PN resources page:

http://pages.ivillage.com/tjune/pn.photo.html#***
http://www.dermis.net/doia/image.asp?zugr=d&lang=e&cd=5&nr=97&diagnr=698210
http://www.dermis.net/doia/image.asp?zugr=d&lang=e&cd=5&nr=102&diagnr=698210

Prurigo Support Group

http://pages.ivillage.com/tjune/PN.html#***

Prurigo Definitions and Treatments

Definition of Prurigo (a type of Atopic Dermatitis) and Picture:
http://hiv.medscape.com/Medscape/PrimaryCare/TreatmentUpdate/2000/tu01/tu01-04.html

A good site with many articles and pictures on Prurigo
(do a site search for “Prurigo” to get the articles)
http://www.dermnet.org.nz/index.html

Article on “H. pylori” as a cause of Prurigo
(Username: jondoe  Password: 5489)
http://www.medscape.com/medscape/Dermatology/journal/2000/v01.n02/ca-md1128.01/ca-md1128.01.html#a8

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Other new pals (2001):
Nancy B - "I have spent hours and hours on the internet, your information was by far
the most helpful.  First of all, you were the only one to share pictures
that looked exactly like my condition."
Lesley D: " am so glad I found this website and it is sch a relief to know that I am not alone in this itchy
mess!!!"
Rashantha, Singapore: "I have been reading your page, it is so my story."
David: "Thank God and thank you, thank you, thank YOU for your site!"
Amanda R: "Your story sounded so familiar except I haven't had a doctor who took
me seriously enough to aggressively treat it."
Terry: "OH where do I start? I have had this insidious disease for 24 years!  ...It is very exciting to find people to
exchange info with, in all these years I've never known another soul with PN. "
Randy A: "I am amazed how incompetent the medical field is. To find a doctor who
would research to solve this problem seems impossible."

Along those lines, I have written a letter to the editors of Archives of Dermatology, speaking to the need for more research into PN, updated therapies, and *more education* about PN for dermatologists. I welcome your input for this letter; which will be attached to an email directed to the PN list. I have also posted a copy at the Message Board.
Thanks to everyone for their continued support!!
Tanya Cassingham
05/14/01

UPDATE JUNE 2001
As some of you already know, the PN Message Board has moved from CoolBoard to EZboard because Coolboard shut down. I hope you will continue to visit the Message Board and share your experience, suggestions, and HOPE with everyone who has PN. The new address is:
http://pub80.ezboard.com/bprurigonodularissupport
This is the most frustrating condition in the world! Several months after the Dapsone, my PN is totally relapsed. It seems like many things help only while I take them, and then it comes back after I stop taking the med. Sigh.
Several people have reported having good results with FungiCure, a liquid anti-fungal preparation that is sold over the counter (OTC). I have also tried this with some flattening and "drying up" of many of my PN bumps. I'm also currently taking ProBoost thymic A protein -- too soon to report much but after 3 days I do see some improvement.  The problem with past remedies is that symptoms resume after discontinuing the meds; this is a supplement you can stay on indefinitely with no ill side effects.
If I don't see a complete cure within 3 months my next step is going to be thalidomide, and I will certainly keep everyone posted on that!
I had been encouraged by folks on the PN message board to write letter to the editors of Archives in Dermatology, as sort of a spokesperson for PN.  After talking to some colleagues who are in the research/medical field, I have postponed sending the letter to Arch. Dermatology until I feel more comfortable with the wording and the intent of the letter. If you are interested in reading the draft please email me and I'll send it to you for your suggestions and comments.
Thanks again to everyone for "sharing" and helping me (and hundreds of others) keep their sanity!!
Cheers.
Tanya
06/26/01

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UPDATE AUGUST 2001
For those of you following the Message Board, you know that a couple of women have started taking thalidomide and had very good results. After 5 years of battling PN, I have decided to try thalidomide too. This was a difficult decision. Since I am 42, I recall the terrible birth defects that occurred in the late 50s and early 60s from mothers taking thalidomide, mostly in Europe. So the very name "thalidomide" still has a very negative effect on most of us. Then there is the possible side effect of peripheral neuropathy - loss of sensation, usually in the feet. The good news is that you can prevent pregnancy if you really want to, and the neuropathy is 99% reversible if you stop taking the med. It is pretty difficult to get on thalidomide in the U.S. -- you are not going to just waltz into your doc's office and get a prescription! The doctor has to be enrolled in the STEPS program through the National Institutes for Health (NIH); you have to be on birth control pills if you are a woman who CAN still get pregnant (i.e., you still have periods); and you have to agree to have regular blood tests (1 to 4 times a month, depending on your doctor and circumstances). A serum blood test has to be done *before* you start as well. For anyone who is interested, please read this excellent transcript of the NIH Thalidomide Meeting from 9/9/97:  http://www.fda.gov/oashi/patrep/nih99.html .  It is a little bit scary, but very informative. And you need to know what you're getting into if you want to try thalidomide. My next appointment is September 17, and I should be able to start the medication by the next day. I'll keep everyone posted!
In the meantime, don't forget to visit the Message Board  PN Talk to share your experience, strength and hope with other "PN Pals."
Tanya
08/17/01

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UPDATE - OCTOBER 2001
I started thalidomide on September 12, so I just finished 4 weeks. I started on a Wednesday and took off work Thursday and Friday. In addition, I've had to take 2 separate days off because I was too sleepy to go to work.  First of all, I am happy so far with the results in general. The most dramatic improvement came in weeks 2 and 3. It seemed like overnight a lot of bumps flattened and stopped itching. Out of about 200 bumps, there are maybe 10 that are still raised or itchy. I can deal with 10! Overall the itching is much better -- no more blood everywhere. A few bumps have completely disappared, leaving crater-like scars. I can also deal with this. A lot of people who are already to the point of dealing with scars email to ask "what do you do about the scars?" I don't know! I'm not there yet. So if anyone has suggestions for improving the scars, please post your experiences and advice on the Message Board.
The side effects I've had are: sleepiness, dizziness, sore muscles in arms. The sleepiness isn't too bad if I get 9-10 hours of sleep. I just have to force myself to go to bed at 9:00, which is really hard for me. At first the Thalomid didn't seem to make me sleepy, it still took about 2 hours for me to fall asleep. Now I take it at 8:00 p.m. and I'm sleepy by 9:00 (go figure). The dizziness could be a by-product of sleepiness, it is mostly during the day while I'm at work and trying to function. I have to stop and just sit for a few minutes when it really hits me. The sore arms brings me to a concern I have about thalidomide: since it is not known how thalidomide is eliminated from the system, could it be building up and/or getting deposited in fat or muscle tissue? This sort of scares me.
So all these things remind me that taking this med is a serious decision. This is not just some antibiotic. Before you make the decision to take thalidomide please educate yourself as much as possible. More web sites to visit:
 http://www.celgene.com
 http://www.thalidomide.ca
 

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UPDATE - APRIL 2002

Hello all, I am finally posting an update! I wanted to wait until I had been on Thalomid for several months before making any definitive statements on the web site. The good news is that Thalomid has been very effective in treating my PN. The improvement has occurred steadily in stages: at ~ 4-6 weeks nodules began to flatten and stop itching; at ~ 6-8 weeks a lot of the redness diminished and nodules continued to flatten; after 8 weeks there was a steady improvement with more nodules fading to a white, or light purple shade and continued relief from itching.

The daytime sleepiness diminished after about 3 months, and I also went back to needing only about 7 hr of sleep at night. But there is still some occasional dizziness, so I'm careful when climbing stairs, ladders, etc. The soreness in my arms went away by about 6 weeks and it may have been unrelated to Thalomid. I'm still looking for more info about how thalidomide is excreted or at least what happens to it in the body.

After 6 months I wondered if reducing the dose of Thalomid from 100 mg to 50 mg would still be effective. My doctor agreed, and after one week on the lower dose I noticed some recurrence of symptoms. Several nodules began to itch again and took on a blood-filled (red) appearance. Because I got the Rx for only one capsule per day I had to finish out the month on the reduced dose. There was about a 15% recurrence on the lower dose.  This week I went back to 100 mg per day. This has been something of a hassle since I’m once again disoriented and dizzy while I readjust to the higher dose.

SIDE EFFECTS: Of course everyone knows about the severe birth defects caused by thalidomide.  Celgene is working on an analog therapy that will mimic thalidomide without the tetragenic side effect. Because of the recent surge in use of the drug for cancer, other pharmaceutical companies are sure to follow suit.

Other sides effects: because thalidomide inhibits angiogenesis (create of blood vessels) my menstrual cycle has all but stopped. I initially thought it might be early menopause (I am 43) but others have mentioned this same side effect.

Ironically, another side effect is enlarged abdomen so I look like I’m 4 or 5 months pregnant! The weight gain has been really hard to deal with. I’ve never had a weight “issue” and always fit right into my size 10 clothes even after pregnancy. For the first time in my life I am wearing a size 14…. However, I do feel it’s worth it for the relief I’ve had from PN.  Because the weight gain is only in my abdomen I am seriously considering liposuction.  I would like to hear from some males with PN on this topic, if there has been this type of weight gain and how you’re dealing with it.

All in all, I feel like I have my life back, and am just happy to be released from the nightmarish itching/scratching/bleeding cycle. There are still many, many scars but they are becoming less noticeable. I may have the courage to wear short-sleeved shirts soon! For those of you who are frequent visitors/contributors to the PN Message Board, you'll already know most of this info about thalidomide. I've tried to keep everyone informed about my experience with Thalomid, but at the same time not push this view on anyone. I totally understand that many people don't care to try it! I am SO grateful for everyone who shares their "experience, strength and hope" on the Message Board.  By sharing info about different remedies and methods I'm sure many folks have been helped. A counter tells me how many people visit the site and Message Board (OK I admit it: I can't figure out how to make the darn thing show up on the site) and a LOT of people visit even if they don't post.

ANGIOGENESIS INHIBITORS: I just happened to be watching a Nova program called “Cancer Warrior” about Dr. Judah Folkman.  He found that thalidomide is a potent inhibitor of angiogenesis, or formation of new blood vessels, which in turn prevents the spread of cancer.  This theory is really interesting to me as it may apply to PN.  When I get new nodules or even when “old” ones flare up, they are usually blood-filled. At one point I became anemic from having so many that were bleeding.  I was using at least one box of 250 Band-aids every few days.  Is the reason thalidomide works for PN that PN is somehow affected or even caused by angiogenesis?

Here is the Nova website where you can read the entire transcript of the show:
http://www.pbs.org/wgbh/nova/transcripts/2805cancer.html

As always, please visit the Message Board to share or just read and learn.

Tanya (Tjune) Cassingham

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UPDATE - MAY 2002
Shortly after I wrote the April Update, I developed sudden and one-sided numbness in the two smallest toes of my left foot.  I doubt that it was actually peripheral neuropathy because of its sudden onset and asymmetry. I had recently started working out again and using weight machines at the gym, so I suspect it was related to that.  However, I called my dermatologist the next morning and we agreed I should go off the Thalomid until the numbness subsided. The first week was great: there was no recurrence of PN and my energy level sky-rocketed! I am normally a very active person, always involved in something physical. But by day 9 or 10 I started to have recurrence of symptoms, which increased up to day 14 (yesterday). The good news is that the numbness has diminished, so I am back on the Thalomid beginning today. I'm starting back at 50 mg/day to check the effectiveness of the lower dose, with the possibility of increasing to 100 mg again. I am also determined to keep my energy level up by continuing at the gym (no weights for a while) and doing as much as I can while on the Thalomid. It's hard not to give in to the side effect of fatigue, but I'm hoping that keeping a regular exercise schedule will help.
Tanya
05/16/02
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UPDATE - JUNE 2002
Yes, it is peripheral neuropathy. I am back off Thalidomide since pretty much the day after I wrote the May update because the numbness returned the following day. My biggest concern has been that the numbness progressed even after I stopped Thalomid. It is now in a sock and glove pattern (toes up to knees, with more severe numbness in toes and lessening up to the knees); and mildly in my hands (with induction of tingling if I stretch out my arms as in reaching for something). It is difficult to walk but I haven't changed my daily activities too much. I can't walk much but am getting to work (where I can sit). The progression seems to have finally stopped. I saw a neurologist last week and apparently this is relatively normal. I am optimistic that the neuropathy will reverse with time.
It has now been about 4 weeks since I stopped Thalomid again and my recurrence of symptoms is about 15%. Still  wearing short sleeves. I feel this is also optimistic news, that maybe I am really in remission.
Even though I knew what I was getting into, I think Celgene needs to offer a lot more info on the peripheral neuropathy. There is a chance that this numbness won't reverse. My derm doc is going to contact them about the neuropathy and also try to talk with other physicians about alternative drugs (i.e., other angiogenesis inhibitors).
Tanya
06/12/02
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UPDATE - AUGUST 2002
Good news all around! First and foremost, the PN lesions have continued to heal even after stopping thalidomide. Currently there are 3 that flare up. Considering I had about 200 at its worst, I am thrilled! The mild recurrence of itching is now only about 5%, just very occasional. The numbness is improved as well, with no interference with my daily activities. Last week I had a dermatology appointment and the doctors were also very happy with the results. I will not have to resume thalidomide, and I was released from their care with an appointment in 9 months. This is the the first time in several years that I'm not going every 4 to 8 weeks. Needless to say, I am very happy.  There are still some scars, of course, which seem to be fading with time, but I am wearing short sleeves!
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UPDATE - SEPTEMBER 2002
Although still improved, I am having a flare-up of symptoms. Patches on my legs and several bumps on my arms have become itchy, with skin breaking easily and bleeding. I am hoping it's a temporary set-back, and am using erythromycin topical solution on the outbreaks. The most important thing is not to get back into the scratching habit, so I am using behavior modification for that. One thing I've been doing is rubbing my fingertips together when there's an itch, it really helps me to not scratch it! Plus my nails are clipped very short again.
I have written to Celgene to get information about an analog for thalidomide, and will post the info as soon as I receive it.
Keeping my chin up. This will not control my life! Keeping very busy otherwise helps too.
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UPDATE - DECEMBER 2002
I have very good news! Eight weeks ago I started seeing a doctor here in Atlanta who combines traditional and alternative medicine. After quite a battery of tests, I started taking many supplements and also hydrogen peroxide (IV) treatments once a week. The improvement is truly amazing. I have very few active bumps and the scars are also fading. I'm also going to start taking DMSA supplements in the next few days (Rx only in the US but you can order it online from Canada). I also started eating much less, partly to see if a food allergy was adding to my immune problems. I am keeping a food diary and have definitely noticed that certain foods can cause a flare-up (alas, chocolate among them). A great side-effect is that I've lost about 20 lbs and feel fantastic. I also purchased a used treadmill and I exercise on it, or walk outdoors, every day.
I'll report back in about a month on the DMSA treatments. For a list of my supplements or other information, email me!
Love and peace to you all. I hope you have a wonderful 2003.
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 UPDATE - FEBRUARY 2003
I finally took the "big leap" (of faith) and went to Mexico for 4 weeks for the treatment of my PN. It was an amazing experience, and very successful. The alternative doctor in Atlanta was great, but was unable to provide the intensive type of treatment I felt I needed to really be rid of PN. The approach in the US is typically to make it LOOK better and treat only the symptoms; in Mexico they felt that the healing had to start "inside" at the root of the problem. I had several areas which made my immune system very weak: a high level of candida (yeast) and also elevated helicobacter pylori. I am confident that this approach actually "killed" the PN.  As far as appearance I am at about the level I was after 6 months on thalidomide. But I will continue to improve from this therapy (which includes supplements for the next 6-9 months). There is a lot of discussion about my trip and results on the PN Talk message board. I also kept a journal which I will eventually get typed! After my scars are faded I plan to post before and after photos as well. So stay tuned! 
*******BEFORE AND AFTER PHOTOS:********

 
ARMS - BEFORE MEXICO
 

 
ARMS - TWO WEEKS AFTER RETURNING FROM MEXICO

UPDATE - FEBRUARY 2004
  It's been a year since my last update here, but I've posted a few updates at PN Talk.  I've certainly remained improved since going to Mexico. I've had a lot of emotional upheaval and had some flare-ups with that.  Last summer I took ultraviolet light B (UVB) treatments which greatly helped the flare-up and the scars. After my insurance company reneged on paying for the treatments I had to stop the treatments and had some relapse again. I recently decided to purchase my own UVB light panel for home. It cost about $1450 plus tax and shipping, around $1625 total. This is less than I paid for 12 weeks of UVB therapy at the dermatology clinic! I had to talk with my derm docs about exposure times and a plan of treatment, and after only a week I already see improvement.  Anyone who is interested in purchasing a home unit can email me and I'll provide more info.

I think a big change has also been in my attitude; I just don't think about it and don't let it bother me like it used to. I am more comfortable in my own skin, as they say. I see a therapist who has really helped me with this issue.  Having PN doesn't define me anymore.

Here are two more good PN sites;  both of these guys post often on the PN Talk message board.

health.groups.yahoo.com/g...nodularis

www.eborg2.com/Prurigo.htm

UPDATE - FEBRUARY 2005
Please go to PN Talk, since that's where I post my updates now. Currently I'm doing pretty well with UVB light therapy. Here are some recent photos of my arms and legs: http://www.eborg2.com/Prurigo1/PN-TanyaPics.htm
I have a new dermatologist who wants me to try Enbrel in the hopes of getting rid of PN completely. I am going to have some preliminary tests in March and if all goes well will start the Enbrel soon after that.

UPDATE - MARCH 2005
I am running into problems getting approval to use the Enbrel. First my Rx insurance provider (Caremark) said it was approved, now they're saying it's not. I had been under the impression my doctor would write a letter requesting off-label use of Enbrel (its primary use is for psoriasis and rheumatoid arthritis); apparently that never happened. So it's back to square one. In the meantime I'm having the worst outbreak in years.... This time starting as fluid-filled blisters, itching, bleeding, very painful. Worse around my ankles, but I probably have a dozen altogether. Of course this is a week before a trip to the beach. Part of the relapse is not wanting to deal with it. I just want a normal life again. I don't want to think about or spend time treating it. Sometimes I think I don't have time to use my UVB light, but I have to make the time. 

UPDATE - MAY 2005
 I went to the beach in Florida a couple of weeks ago and actually wore a swim suit! Still some scars, but I continue to heal.

UPDATE - NOVEMBER 2005
In August I developed a MRSA infection (methacillin resistant staphalococcus aureus). Starting about 1.5 years ago I had some of this MRSA infection get into lesions and cause infections.  In August it got into my bloodstream, which can be very dangerous. My doctor had me get a PICC line (out-patient procedure) which is sort of like a thin catheter that goes in your arm. For 8 weeks I administered vancomycin antiobiotic 2x a day; this is a procedure that you can do at home and doesn't involve needles.

The medicine worked and I'm much better now from the MRSA, hopefully it's gone. But what surprised me is that my skin also healed an incredible amount. The few lesions I had that popped up now and then are gone. My skin looks better than in the photo above. Even the lumps that were not active got flatter. My guess is that there was secondary chronic staph in the lesions which needed a medicine as strong as vancomycin to heal. However, I'm returning the infectious disease doc who treated me and will discuss possible other causes for "PN."  One of his other patients had a very similar skin condition which turned out to be from chronic Lyme disease! (I tested negative for Lyme.)

Will post an update following the appointment.

PostScript: At the appointment, my doctor suggested that the *cause* of PN was possibly staph infection! This floored me, because I had not considered that the staph infection could have been active all these years and become such a chronic condition. But my doctor said this is actually not uncommon. He said that if any doctor had taken a culture in all these years it might have been cured much sooner.

UPDATE - MAY 2006
I have continued to do well, with about six bumps that itch (and I scratch at sometimes).  This is nothing compared to what I started with! No more MRSA.
Update on Celgene analog to thalidomide: They have a new drug called Revlimid which a PN patient in the UK has used and reported as a cure. However, it is not available in the US for use wi th PN. Visit www.celgene.com for more info.
There is a disease similar to PN called Morgellons, and I am looking into a possible connection. If your "PN" includes finding fibers, seeds, specks or granules in the lesions please see: http://www.morgellons.org

UPDATE - JUNE 2006
As I continue to do well following the i.v. antibiotic treatment, I am strongly urging anyone with symptoms of PN to seek attention from an infectious disease doctor. I am becoming more and more convinced that this is NOT a dermatology problem, and that's why the dermatologists can't help us!

Currently I have three bumps I've scratched at, but they now heal pretty quickly. If I get any more bumps I will return to the infectious disease doctor, possibly for a course of oral antibiotics.

UPDATE - OCTOBER 2006
I had a major turning point yesterday: it was the first time I went to a doctor (for something other than PN) and nothing was mentioned about my skin! Even though I had on a paper gown and most of my body was visible, the doctor didn't even seem to notice the scars.  I'm very happy and grateful, and I urge others not to give up!

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ONLINE DIGITAL DERMATOLOGY IMAGE LIBRARY:
 http://dermatlas.med.jhmi.edu/derm/
The Dermatlas is an international collaborative project that enables health care professionals, parents, and patients to access high quality dermatology images on the World Wide Web. The Dermatlas also includes an online Dermatology Quiz that allows trainees to test their diagnostic skills. The Dermatlas is compiled, reviewed, scored and updated by physicians of the Johns Hopkins University.  Currently 2192 clinical and histological images are included in this fast growing collection of dermatology images.

Users can search for images by condition, and are encouraged to submit their own images. This is a great opportunity to help educate health care professionals and trainees about PN!

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The PN Survey is now on-line! If you have PN, please take this anonymous survey:

  PN Survey
 

THANK YOU!!

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Thanks to Emory University ITD for use of this web space. This web site is created as a "Personal Web Site" available to Emory students, and to staff with permission. Any opinions, suggestions, or advice contained on this site are solely the author's and do not represent Emory University in any way.