Learning to Live with Erythroderma

I discontinued Cellcept on June 14 on my doctor's advice.  Cellcept (an anti-rejection drug) had caused my platelets to drop.  Now, one month later, the platelets have returned to near-normal.

In my research, I found that some people with this disease choose to go medication-free.  I researched and found that people do about the same whether they are medicated or not.  Why didn't my doctors tell me this?  Why should I put chemicals into my body with all their side effects? For now, I'm going to continue without Cellcept or any other medication for ED. 

If it worsens, I hope I'll be brave enough to see it through and not  panic and ask for meds.  I really want to do this.  My mother never took anything  (other than an occasional Tylenol) and she lived to age 98.  There is something to be said for not taking medication.

I realize there are times, you have to, and I do.  I take Byetta for diabetes, and Atenolol for my heart.  These are necessary.  I'm slowly working myself off hormones, and am down to only 2 pills a week.  Before the end of the year, I'll be off those.

I also found that retinoids are used to treat ED.   Retinoids are Vitamin A.  I looked and found information on which foods contain Vitamin A.  I figure if I eat lots of those foods, it will help.  This info is located at http://www.whfoods.com/genpage.php?tname=nutrient&dbid=106

I lead a healthy lifestyle; nutritious foods, plenty of water, exercise by walking, no alcohol or smoking, adequate rest, no stress other than the stress of having this disease (and it is very stressful, but I work hard at staying calm).   I don't know anything else I can do to get well, other than to walk more. 

There are advantages to cardio-vascular exercise.  It is recommended for improving diabetes and heart problems.  Maybe it will help the ED as well.  I plan to start walking farther, and see what happens.

I've found some other people with Pityriasis Rubra Pilaris (PRP is the form of ED that I have).   Several of these people have gone medication-free successfully.  They are no worse than they were with medication.  Two  of them  have gone into remission and one is greatly improved.  I cried when I read that one man had the disease for 18 years and actually went into remission after all that time!  It gave me hope!  I've had it for 14 years.  My last doctor's visit, he told me I would never get well.  Oh yes I will!  If that man can go into remission after 18 years, so can I.

This diary had been a big help to me in keeping track of my health progress (and lack of it some days).  Today is the beginning of a new chapter for me.   I pray that I will go into remission soon.  I can't wait for the day that I can write in here that my skin is totally clear all over.

 Today has been a rough day, with itching, burning skin and aching all over.  Tomorrow might be better.  If it is better or not, I WILL WALK for an hour daily.  I think I can manage half-hour in the early morning and half-hour late evening.  I've been doing a mile a day, and plan to build up to 3 miles .

I will go into remission eventually.  I won't accept the doctor's opinion on this.