My husband is Charlie, and Alex, now age 7, and Samantha, age 4.
22 January, 1998
I have been in recovery for the past few years, but the memories of the ravages of PRP are still with me. When I developed my case there wasn’t any information anywhere and my doctor was very reluctant to give me any information. In fact, when I asked him intellegent questions about PRP, he wanted to know where I got the information and proceeded to tell me that I read too much! Through NORD, a few other sufferers and I managed to gather articles on PRP, and we each wrote to each other about our particular cases. I even wrote directly to Dr. Griffiths and received a personal reply. To date I have never seen another person with this disease. I know that my particular case was severe for me, but in talking with others at the time, I was not hospitalized and therefore felt very fortunate.
I still have a 2″ packet of information/letters that I have accumulated over the past. Would you or the group have any interest in this? I really have no pertinent questions I need answered but I am willing to help anyone going through this.
Virginia Beach, VA
30 November 1994
Dear Lady and Gentlemen:
After being diagnosed with pityriasis rubra pilaris in October, I contacted the National Organization for Rare Disorders, Inc., and was given your names as others with this disease. I have spoken at length with Mr. Pack and Mr. Reid about our individual cases, and treatments. It was recommended that I contact you and give a history of my disease, so here it goes.
I am an Iowa-born and raised 35-year-old white (Irish) female, 5’4″, currently 140 pounds (normally 115-125 lbs), married, with 2 children (Alex 4 years, and Samantha 10 months). I moved to Virginia 8 years ago. I am a stay-at-home mom, and, when I have a spare minute or two, I am a self-employed bookkeeper/secretary for a real estate developer. I don’t drink as I get sick every time I imbibe too much, I don’t smoke, and I don’t do any drugs. I have never been one to exercise much, but after the birth of my last child I was walking a mile every day until my skin hurt too much.
I do have allergies. As a teenager I received cortisone shots every hay fever season to relieve the symptoms. I discontinued them a year before college (possible reason for occurrence of second episode of skin problems??). For the past 5 years I have been getting monthly allergy shots (of the antigens which I’m allergic to) which have alleviated most of the allergic symptoms. As a very young child I became very run down, was hospitalized with infectious asthma, and received a series of gamma gobulin shots — I had a full recovery. My maternal grandfather who died in 1959 is said to have had skin problems, but there are no details about it other than that it embarrassed him and he always wore long-sleeved shirts. I have a brother that has skin problems, but he says the doctor says its just eczema.
My first problem with my skin was around age 12-13 when my scalp was affected. It was at the time diagnosed as seborrhea, and was treated with a yellow medicated shampoo (sulfur maybe?). I don’t remember any other physical problem areas at that time. The second outbreak was when I began college and at that time it was my face that was primarily involved. I don’t remember going to the doctor for treatment at that time, but I do remember using a prescription hydrocortisone, so I must have gone to Student Health for the problem. Whenever I noticed flaking, or itching, an application or two of the hydrocortisone would alleviate the problem. Both of these episodes occurred during pretty stressful times in my life — my skin just added to it.
Everything was under control until immediately after the birth of my son (December 1990). I had lost a baby the previous year (ruptured ectopic pregnancy), and I had a very difficult time becoming pregnant the second time. In the beginning, my ob-gyn thought I had another ectopic pregnancy, so I had an emergency surgery to rule that out, and blood tests every other day to make sure the pregnancy was progressing normally. Half-way through the pregnancy I was diagnosed with gestational diabetes (I’m a diet-controlled diabetic only while pregnant). Labor was induced a week early because I hadn’t been feeling the baby move. After 13 hours of labor, I had an emergency C-Section, and the baby was placed in NICU with IVs. Needless to say, it was a pretty stressful time in my life. The baby ended up being ok, but my face started to itch constantly while I was in the hospital. About two weeks later I went to my family doctor, and was told that I had seborrhea on my face, a fungus under my finger and toe nails, and a rash of some kind on my arm (aren’t family doctors wonderful??). I continued to get worse. My toe nails became so painful that I had to cut holes in the tops of my shoes in order to wear them, and my face was one large flake. I contacted a dermatologist and was then promptly diagnosed with psoriasis, and later diagnosed from biopsies as also having parapsoriasis and guttate psoriasis. During this episode only my arms, face, scalp, nails, and upper torso were involved. Because I was nursing my baby, treatment was pretty limited. I received UVA light treatments 2-3 times a week, and various lotions, creams, and ointments. Something worked because I cleared almost entirely within 6 months, but the doctor had me continue the UVA for an additional 2 years (money hungry doctor????). I discontinued the UVA while pregnant with my second child. During the first pregnancy I noticed that my moles (present before) had become hard and crusty resembling warts, sometimes itchy, and would at times crust off, leaving me bleeding. After delivery they disappeared and appeared like normal moles. This happened again at the beginning of my second pregnancy and continued throughout. At this point it’s hard to tell what they look like but I think they look semi-normal.
My pregnancy with my second child was definitely not as eventful as the previous one, but I was still diagnosed with gestational diabetes (also diet controlled). This labor was also induced two weeks early (9 lb 8 oz baby!!), and again I went through 13 hours of labor only to have another emergency C-Section. My daughter was placed in NICU with IVs, but was ok. I left the hospital commenting on how wonderful my skin was: no itch, no rash, no redness; it felt soft, hydrated, and perfect — what a novelty! Three weeks later my mother-in-law passed away, and about 2 weeks after that it started again, only this time it was different. I was nursing this baby also and my nipples began to crack and bleed. I contacted a lactation consultant and the baby’s pediatrician — diagnosis: possible thrush (yeast infection) and/or reoccurrence of the psoriasis. Just in case, the baby and I were treated for the thrush (topical anti-fungal cream on my nipple), and I was instructed to also use 1% hydrocortisone on my breast. At this point my hands were peeling extensively, but because of a newborn at home, and another child still in diapers, I thought it was just from frequent hand washing. Then a rash began on my forearms, later moving to my face. At that point I contacted a dermatologist (a different one), and by the time I was seen (about 2 weeks after it all began) everything from my waist up was involved, and all of my nails. Because of the breast feeding, he was limited as to treatment. When I informed him of the previous UVA treatments, he was baffled — he knew of no reason why that treatment would work without the psoralen. I was promptly given UVB treatments trice weekly, and various lotions, creams, and ointments. I finally got myself to look presentable, but the involved area was growing by leaps and bounds. All the standard treatments would work up to a certain point and then begin to fail. About once a month the UVB and ointments/creams would cause me to burn. I had/have a lot of faith in my doctor — he is Harvard educated, his partner Yale. They took more biopsies, had them compared with the biopsies taken 3 years before, and the results came back psoriasis. They suspected pityriasis rubra pilaris, but with the treatment for PRP being pretty much the same as for psoriasis (Methotrexate), until I weaned the baby, they had their hands tied. I was told by my lactation consultant, the baby’s pediatrician, and all other so-called experts to discontinue breast feeding and take care of my skin, but being the stubborn Irish girl I am, I thought that a pretty selfish thing for me to do to my baby, and I waited until she weaned herself at 7 months. Immediately, my doctor had me try Dovonex and it appeared to work — 4 weeks later it began to burn me. So I switched to other spots on my body and concentrated on them — again, 4 weeks later it began to burn again. All this time I was still getting UVB treatment 2-3 times a week, and never got above 3 minutes a session. Every time I would get a burning sensation on my skin, the doctor would decrease my UVB time and then begin to gradually increase it approx. 10 seconds a visit. The second time that the Dovonex burned me, my doctor gave me a name of a professor of dermatology at the Medical College of Virginia in Richmond (Dr. William Jordan), and had me make an appointment. I promptly went to see Dr. Jordan, and while sitting in the waiting room, he had me diagnosed, but waited until after examination to give me the diagnosis of pityriasis rubra pilaris.
As for my side effects of this disease, I think the worse one has been the itching. On a regular daily basis, sometimes continually all day, I get what I call itch-attacks. One spot will itch, and while scratching it, hives appear and move all over my body, and the itching is so intense I feel like a dog going after a flea. As I scratch I can literally feel the histamines being released (like a flush that goes throughout my body). My husband tells me to just not scratch — HA. My doctor isn’t much help with this — he just suggests that my skin is too dry and I need to apply more lotions and/or soak in the tub. Whenever I try his suggestion, the hives appear almost instantly, and the itching is worse than ever. By the time the episode is over I’ll have scratched most of my body, ripping my skin in the process. I take Benedryl nightly for the itching, and depending upon the severity that day, I take between 50-100 mg. If it’s really bad, I take 2-4 hydroxyzine at bedtime. Because of the two small children I’m unable to bear the drowsiness that antihistamines cause.
Another side effect I have, but one in which I can sometimes laugh about, is the flaking. I told people at Halloween that I was dressed as a flake; and on the rare occasion that I wear a long-sleeved shirt, my husband tells me that I look like I have fairy dust coming out of my sleeve when I move my arms suddenly. I suppose that if I were to keep all of the flakes that come off my body in a day, a would have at least a cupful.
It seems like I’m constantly cold. We keep the heat around 76-78 degrees in the house so that I can remain comfortable, and I have a blanket on my side of the bed only. I also wear socks to bed to help keep warm. The rest of my family is sweating. As for sweating: I think I do, but sometimes it’s hard to tell the difference between sweating and all of the creams/lotions/ointments on my body.
I am beginning to notice that I am very short of patience with my 4 year old and my husband — could this be a side effect of the Methotrexate??
As of this date, I have been taking Methotrexate for 6 weeks (Tuesday night, Wednesday morning and night). I began with one pill every 12 hours (7.5 mg) for the first 3 weeks. The fourth week it was 2-1-1 (10 mg), and the past 2 weeks it has been 2-2-1 (12.5 mg). I take 2 dosages at night just in case I’m going to have any side effects from it — I also take the maximum dose of Benedryl or hydroxyzine at bedtime those nights. My skin turns very red and hurts like a bad sunburn — it’s pretty uncomfortable. I don’t wear long-sleeved shirts because of the pain. So far I haven’t had any hair loss, but I think that I would be ok with that if it meant that my skin would be clear. When I stopped all topical preparations, except hand lotions, my face went out of control again and became one large flake. I dropped in at the doctor’s office and told him that my face was completely unacceptable and he had to help me get it presentable. I am currently using a corticosteriod on my face only, and the redness and flaking has decreased considerably. The rest of my skin seems to be losing some of its redness and flaking — my husband noticed, I’m not quite so optimistic.
This disease has wrecked havoc on my self-esteem. When I had my first episode back in puberty the other kids would tease me. Self-esteem at that time in one’s life is pretty fragile to begin with and mine was completely destroyed because of my skin. I built it back up until college when my face was attacked by flakes and redness — I had a pretty insensitive boyfriend who would make caustic remarks about it. I had so many other things going on in my life during the third episode that I don’t think I had much emotional involvement with my skin. Now, with at times more than 90% of my body ravaged by PRP, and the pain, itching, and flaking, sometimes it takes all I have just to leave the house. When I apply lotions at night and my skin hurts so bad that I can’t move, I have just started crying because it just feels so hopeless. It’s been so long (9 months) since I’ve had good skin. I don’t like to go anywhere without my children, especially my baby, because I can pretend that when people stare they’re just looking at my beautiful children. I stand in front of the mirror and try to figure out at what distance it’s noticeable that there is something wrong with my skin — I think it’s about 5 feet. My doctor said that when I’m on the Methotrexate I need to be very careful about pregnancy, and that my husband and I need to use 2 kinds of birth control. There’s no need for that because I don’t want to be touched. All I can think of is how repulsed he must be touching my skin, because I’m repulsed by it. And if I can get past that, then it begins to itch. It’s just a cycle I can’t seem to get out of. My 4 year old has been known to come up to me and give my skin a kiss and say he’ll take care of it and make it better. I, in all honesty, don’t want PRP to be the focus of my life, but at this time it is. I think that with all the misdiagnoses I’ve gone through with this disease, it’s hard to be very optimistic about the outcome.
My doctor in Virginia Beach said that while a resident at Harvard he saw PRP a few times, but since being in practice locally (17 years) he has seen PRP 3 times. Dr. Jordan, the Richmond doctor, told my husband and me that at any given time, there are approximately 6 people in the state of Virginia with PRP, and that it occurs in about 1 in 2 million people. Aren’t we lucky?!?!?!?
Tierney L. Ratti
18 September 1995
It was great to hear from you all (Ellen, Tony, and John), and I’m elated to hear of your recoveries from PRP. I have been meaning to write to everyone and give an update on my particular case, but since I’m still in the process of recovering, I don’t have much to say.
I’ve been having a pretty difficult time with Methotrexate since being put on it in October 1994, although I can’t seem to find a doctor who will agree that it has been the Methotrexate making me constantly sick and tired — the general concensus among them is that I am suffering from depression (wonder why???). In January 1995 I landed in the emergency room with what was later called an “ocular migraine,” which was like tunnel vision but with flashing/strobing lights in the peripheral region (no pain associated), and nausea/diarrhea. My pharmacist and a toxicologist friend of mine, both said that it was definitely the Methotrexate that caused it (the ER doctor had no experience with Methotrexate at low doses) — at this point I was at my all-time high dose with the drug. I believe we all have had our blood tested on a regular basis, and one of the things that’s tested for is eosinophils (an indicator of allergic reactions). Normal levels are 5 or lower — at the time I was in the ER mine was 13. Still, no doctor would agree it was the Methotrexate. By spring my skin had cleared with the exception of a large spot on my chest, and a few small spots on my face and arm, and I was placed on a maintenance dose of 5 mg/week of Methotrexate. After two months I noticed that I wasn’t getting any better, and possibly worsening slightly. The thought of increasing the Methotrexate was intolerable to me — I had been experiencing “psychosomatic” symptoms associated with taking that vile drug (specifically, vomiting and diarrhea within 12-24 hours before I was to take it), and the depression I was encountering was almost more than I could bear. I was going from specialist to specialist trying to find some “real” physical cause for my ailments — none were found — and those “in the know” said I was on too low a dose of Methotrexate for it to be the cause of my excessive tiredness or illnesses.
About six weeks ago I called my dermatologist and said “I’m sick and tired of being sick and tired, and I don’t want to take Methotrexate anymore! What do I need to do to stop taking it?” The answer was just stop taking it — which I did! I had a follow up appointment 4 weeks later and my skin looked the same as it had been. The dermatologist said that since it took 4-6 weeks for my body to begin reacting to the Methotrexate in the beginning, it could take 4-6 weeks for my body to realize it wasn’t getting it anymore. Later that week my skin began to worsen. I’m still watching it very closely and hoping that it’s not going to come back like it was before. Right now I can live with how it looks and feels.
In my research, I kept coming across the name of W.A.D. Griffiths, MD, as the leading researcher on PRP. A week ago I got his address in London, and wrote to him asking for his help — said I was even willing to travel to London to meet with him if he so desired (I figured it would end up being cheaper to do that than continue on the way I have been). I am still waiting for a reply. If I do hear from him I will definitely pass it on.
In the meantime, it appears that my other drug alternatives to fight PRP are Tegison and Accutane. I’m hearing horror stories about both. Are any of you willing to give me your opinions about them?
I wish I had something more upbeat to report to you. Maybe next time.
Take care one and all.
Tierney L. Ratti
21 November 1995
Dear One and All:
It seems as though our list of sufferers keeps growing and growing. How is everyone doing?
You may remember that back in September I wrote to all and gave an update of my case. As of this date nothing much has changed. I still have periodic episodes of dry patches, and some spots have just never gone away. In the hopes that I will never have to go on any of the more potent drugs again, I began using a vitamin B-complex supplement (100 mg/day) (includes B1, B2, B6, B12, Niacin, Folic Acid, Panthothenic Acid, Biotin, Choline, Inositol, Paba, etc.), with an additional 300 mg/day of B6 (two weeks of the month), and am still taking a prenatal vitamin on a daily basis. I have enclosed copies of the pages from Earl Mindell’s VITAMIN BIBLE so you can see for yourself why I am taking these particular supplements. I figured it couldn’t hurt, and I might just get some benefit from it. For those of us suffering from depression, the B vitamins are especially good to take (personal experience and advice from my psychologist). I found it quite interesting to learn that a deficiency in folic acid can cause depression — Methotrexate works by decreasing the folic acid in one’s body. Does anyone else have any experience in this area?
Also in my last letter, I mentioned that I had written to W.A.D. Griffiths, MD, the leading researcher on PRP. Yesterday I received a reply and I am also passing it on to all of you. I am very impressed that he took the time to answer my letter. He also wrote more about me and my case than either of my doctors here in Virginia. The drug, acitretin, that he wrote about is not known by my pharmacist — has anyone heard of it?
Tierney L. Ratti
973 Commodore Drive
Virginia Beach, Virginia 23454