ECZEMA/ALLERGY STORIES: Immunosuppressants Can Create a Bumpy Road for the Diagnosis Process

This story was submitted to my general email address, but I just had to share!

I come to your page frequently for support! I am a 29 year old mother, nurse and wife whose life was turned upside down a year and half ago. I was found to be allergic to PG and lanolin amongst many other allergens. I am feeling frustrated and amazed by how much one allergy can turn your world up side down. I was diagnosed with dyshidrotic and atopic eczema on both hands after switching jobs to an office RN. After trying multiple topical creams, which we later found I was allergic to, and multiple prednisone tapers with no success I was unsure what to do next. Patch testing was performed then I was given a kenalog injection. I was faced with the decision of not being able to care for my 2 year old due to my extensive discomfort or weaning my 2 year old of my breast milk so I could start cyclosporine. Much to my dismay I chose to wean my daughter, which was harder on her than myself. I’m pro extended breastfeeding and this went against everything I have ever wanted for my child to be able to self wean. The cyclosporine was started with little relief, my dose was tapered up to the maximum dose recommended for my body weight. I had every imaginable side effect to the cyclosporine during this time; excessive hair growth, low magnesium, cramps, increased blood pressure and weight gain. I’m sure you get the idea by now. I since had asked to be sent to an educational hospital for a second opinion. I went there and was told my diagnosis and treatment was spot on. I was told then, that I have the worse case of dyshidrotic eczema they have ever seen. I went back home feeling defeated, still unsure how to be a wife, mother and nurse. Multiple blood work appointments and follow up appointments with my dermatologist resulted in me being told they no longer could care for me due to the severity of my condition. They suggested I go establish care with the educational facility I went to receive a second opinion. Again, I was defeated because that meant driving a hour and a half one way, each time I needed a doctors appointment because I live in remote Vermont. The doctors at my new dermatologist office decided I would be best to redo my patch testing with Dr. Zug, one of the leading experts in the field. So, I drove 3 times that week to my dermatologist to complete the patch testing. At that time I was still on cyclosporine but they were to afraid to decrease my dose for fear I would have a severe flair. This round of Patch testing revealed total different results than the first time. Once again, I was frustrated. The first time I was patch tested I was noted to have 15 allergies, this time it was found I had 7 allergies most which were different than the first time! Being on an immunosuppressant during allergy testing is less than ideal, but what is one to do. Now, how do I live with my allergies as a nurse and mother? I’m still trying to get this under control as it seems PG hides in everything!

It was then decided that cyclosporine was not safe for me to take long term, so I was switched to cellcept. In order to do this the doctors decided to bridge me with prednisone while weaning me off cyclosporine and starting the cellcept. Low and behold, I ended up with a full body yeast rash because I was so immunosuppressed. Multiple trips back to my dermatologist and a 14 day course of diflucan cured that. I can not explain ho itchy this was, the worst! Cellcept proved not to be 100% effective either. Puva light therapy was then suggested. I was concerned about missing work and the financial toll of driving to the dermatologist 2-3 times a week for 5-20 weeks, so I declined. I then discussed this with my husband and work, who all decided I must do it! I spent my summer driving back and forth to Dartmouth. I also had to avoid sunlight for 24 hours after treatments, which means my summer sucked! I did this for approximately 14 weeks at which time we decided it was not effective. My doctor suggested I go to grand rounds so she could get other opinions from various dermatologists in the area. For anybody who has not attended grand rounds let me explain, it’s horrifying! I had 30 plus doctors come in and out of my room asking me various questions and all examining my hands! They were previously briefed on my medical history. Well these doctors then sat down at a round table and discussed me, I was know as “medical case #3.” Horrifying! I’m a person not a number! I tried to keep a positive attitude hoping some great new treatment idea would come out of all this. The only new recommendation, “take time off from work and try coal tar.” I again, was apprehensive about taking time off from work due to financials and the fact that I’m a busy body. My doctor recommended I try the coal tar. I did, but it started to make “chunks” fall out of my skin (my famous word). I was told to stop the coal tar. At my next dermatology appointment we decided I needed time off from work as a nurse to let my hands heal. Here I am, almost 5 weeks later, waiting for my follow up appointment Monday. I’ve definitely noted some improvement, yet it’s not gone. Now what? Your guess is as good as mine.

I absolutely hate being on a daily oral immunosuppressants at such a young age. I can’t have another pregnancy if I wanted to due to these medications. I have so much anxiety about the unknown and feel so depressed because I can’t participate in my favorite activities. I’ve tried whole food diets, stopping dairy and gluten without success. Ive done the no poo method and all natural cleaning methods to avoid chemicals in my home with no success. I take daily vitamin d supplements. I’m at a loss. I do appreciate all the support my family, friends and your blog/page has leant to me. Eczema and allergies suck, but I will not let them defeat me!

Thank you,
A fellow eczema/allergy sufferer from Vermont

I'm so glad you found my site :-) Welcome to your new allergy/eczema family!

Wow, this story sounds a little similar to mine... the diagnosis phase is absolutely a challenge. That facility with all of the people coming in and out of the room sounds awful... I hope they have some useful information for you in your follow up appointment. It's going to be hard getting accurate results from the patch testing when you're on medication like that... If at any point you can get off it, go do the patch testing and then you can find out your REAL allergies. My heart goes out to you... it's a scary journey! I give big props to your husband - he has your best interest at heart :-)

My fingers are crossed for you!!

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