My Diagnosis: Pityriasis Rubra Pilaris

MARCH 10, 2015

My Diagnosis: Pityriasis Rubra Pilaris

I rescued these adorable little kittens from an abandoned house on Labor Day in 2014. These little babies had a severe case of ringworm along with many other issues. When I saw the first spot on my right arm I thought I contracted ringworm from the kittens. At first I only had a few spots on my right arm. Then I began to notice them on my left shin and calf. I really thought I had a bad case of ringworm. I treated them with over the counter medicine for ringworm. It continued to spread, and spread, and spread. My rash is extremely itchy, with very small circular scabs with "horns" (as they call them).


By December 2014 my rash had spread, now effecting both my arms, and legs, my stomach, neck and chest. I had gone to my doctor and she gave me a round of medicine and a steroid shot to get me well. Unfortunately that didn't work. The spots honestly looked like the chicken pocks. I began to really worry why all of the medicine was not relieving my symptoms. I was so miserable, I couldn't even concentrate because I was so itchy.... I was just plain miserable. I ended up going to the ER for help. I thought for sure they could help me on a Friday night. Well the on call doctor said I had folliculitis and gave me a shot of steroids and told me to take some Benadryl, and that I would be fine. Well unfortunately for me he was wrong. I accepted his diagnosis and went on about my life, the best I could. I started to get  really sick by the end of December. I would have night sweats, major fatigue, and fevers. I would also have what I would call hot flashes all day long, while constantly scratching so hard I would bruise and bleed. I went back to my doctor and told her all the trouble I was having and she referred me to a dermatologist.  

January 2015 came and I was still battling all of the symptoms above and I started to get even sicker. I was having dizzy spells with a very high resting heart rate (147bpm @ one appointment). I went back to my doctor and she sent me for multiple test, and to multiple specialists. I finally had my appointment with the dermatologist. She said she was unsure of what I had. She took a skin sample (a skin shaving) and sent it off for a biopsy. I need to come back in 2 weeks to get the results. During this time I was able to see the cardiologist he diagnosed me with a condition known as Vasovagal Syncope. This is what is causing my heart to beat so fast all day, the night sweats and the hot flashes. He started me on medicine and asked to see me in 3 months . I also saw the pulmonary specialist, like my doctor he did many tests; chest xray, a comprehensive breathing assessment, CT Scan of my sinuses, the whole works. The last week of January I got sick with an upper respiratory infection.

February 2015 was my month for answers!! My dermatologist gave me my test results, I have a very rare skin disease called Pityriasis Rubra Pilaris. I had never heard of this disease before. Once she told me the name I honestly just kept repeating it in my head over and over. I didn't even hear what she was telling me. I know she said I needed to start this medicine, but I had to be approved before I could take it. I will be taking Acutane, I can not get pregnant while on this medication nor 2 months after stopping use. There are many side effects and it is very bad for your liver so I have to take a blood test and pregnancy test every month before they will give me the medicine. I was sick in February with an upper respiratory infection and then the flu. I think I should now have frequent flyer miles at my doctors office. LOL :) I also went to an infectious disease doctor for help. I really don't know why I keep getting so sick. 
I honestly think at this point I'm going to run out of blood if they have me do one more blood test. LOL.

March 2015 I am supposed to start my medicine this month. I have been approved, just waiting for it to arrive. I had my last hoorah with all my friends since I'm not going to be able to drink for a very long time. I did find out that my immunoglobulin m & e are high. My pulmonologist said he wants all the test results back before he makes his diagnosis. So I will continue my day to day life :)




I will try my best to keep this site updated regularly. I hope this will help others with this disease. Never give up! All things are possible to those who trust in the Lord. Our God is an AWESOME GOD