Learning to Live with Erythroderma

It's been 2 months since I quit taking Cellcept for Erythroderma.  I feel my skin is about the same as before, other than the karatin build-up on my soles and palms.  The thickened skinbuilds up and then begins to peel.  It takes 2-4 weeks to all peel off, and then it all starts all over.  This problem is definitely worse than it was while taking Cellcept.  

I learned I could apply medication or moisturizer to my hands and then wear nitrile gloves to soften and heal my hands.  I wear them several hours each day, or all night as I sleep.  This has relieved a lot of the pain and discomfort.

I tried moisturizer with plastic bags on my feet , but sealing up my feet caused toe nail fungus to grow.  I learned that soaking my feet in  a vinegar solution can kill out the fungus.  The problem is, my feet have raw areas where the skin has split and vinegar causes it to sting and hurt worse.  So for now, I'll just focus on healing the skin.  After it heals, I hope to try the vinegar treatment.

My skin is about the same as before, red from my chest down to my knees, with mottled areas on my arms and neck.  I've found that scratching worsens the redness.  If I moisturize 3-4 times a day, it helps the itch so I don't have to scratch as much.  What a bother to stop what I'm doing and apply ointments to my whole body 4 times a day, but it is worth it to get relief from the horrendous itching that comes from excessively dry skin.    

I've developed a cluster of blisters on one shin that are painful.  I've drained them and apply a strong antibiotic ointment several times a day.  The area is quite sore, but seems to be healing.

 I'm sleeping better at night, now that I've relieved some of the itching and pain.  As a result, my days are better too.  

I'm glad that I can go without meds for this disease.  If I can avoid the side-effects of medication, I'll be healthier.  However, I understand that sometimes medication is absolutely necessary, and if it is, I'll take it.  Time will tell as I continue to go without. I want to go at least 3 months without meds before I decide whether to go back on or not.  

I've enjoyed my 90-year-old dad's visit this past week.  He is at my aunt's now, but will be back next week for a few more days.  Dad traveled by car all the way from AZ to IL.   When I walked a mile in the woods with him, guess who was out of breath and who was still plodding on without a problem?  He is amazing, and wasn't even panting when we finished.  What an amazing man at his age to be so strong and mentally sharp.  My goal is to be as healthy as he is when I am that age.  I'm still praying for and expecting remission.