February 27, 2019 - I cannot believe it has been over 5 years since I blogged! I could use the excuse of 4 kiddos, a move to Maryland, new jobs (for both Eric and I), high school for two boys (how in the world did that happen?), health struggles, etc .... but let's be honest - I forgot! In the day to day crazy it is hard for me to sit down and type out my thoughts. But today I need to write, to remind myself of His great faithfulness in our lives. My life verse is Isaiah 40:31 - They that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles, they shall run and not be weary, they shall walk and not faint. I pray this hundreds of times a day. Many of you do not know, but Hannah has been struggling physically since last summer. We noticed some spots on her left thumb during the summer, it looked like a cluster of little pustules. It spread quickly, under her nail, which fell off and the nail bed continued to have many many yellowish bumps and it was bright red and sore. We took her to her pediatrician, her rheumatologist, and many dermatologists. They said she had a bacterial injection, a virus, a fungal infection. She was prescribed countless antibiotics and creams. Nothing worked. Our insurance company suggested that we contact best doctors, which is a consortium of specialists throughout the country that consult on difficult cases. On August 24, 2018, a professor at the University of Florida Miami diagnosed her with just her case study and pictures with Hallopeau's acrodermitis, a very rare and extremely difficult type of psoriasis. A topical cream was prescribed and overnight the redness and pustules disappeared! We were elated! The nail started to grow back, and then more pustules appeared. And we noticed pustules forming under the skin of her heels. Back to the rheumatologist in Philadelphia, who got us in with a pediatric dermatologist at CHOP the same day (I cannot tell you how amazing every single person is at CHOP - they are angels on earth!). The peds dermatologist recognized the hallopeau's acrodermitis immediately (finally!) and said that she has psoriatic arthritis, on top of her rheumatoid arthritis. This was in October 2018. We (dermatology, rheumatology and eric and I!) chose to keep her on her weekly injections of Enbrel and daily oral leflunomide, as her arthritis was the best that it has ever been (there has even been talk of weaning meds), and use topical treatments. A change in biologic was mentioned as a treatment if the topical treatment did not work. (quick facts on biologics - they are a newish class of drugs that have proven to be very effective in treatment/slowing progression of autoimmune diseases. They do come with risks - like increased risks of lymphoma, leukemia, immuno-suppresion and they are extremely expensive - Hannah's enbrel cost approximately $1200 an injection and she receives those weekly). in a very very small percentage of cases Enbrel can cause psoriasis (like 0.01%) but it usually used to treat it. Fast forward to January 7 - we had appointments at Chop with rheumatology and dermatology. Her finger had not improved - it was spreading to surrounding tissue and her heels were cracked, bleeding, and full of pustules. Reading online about Hallopeau's acrodermatitis is frightening - permanent joint damage, loss of fingers, and of course the knowledge that if this is what we see on the outside the psoriatic arthritis could be causing irreversible damage on the inside. Her doctors had talked before we arrived and it was decided that we would switch her to a new biologic Stelara. This is scary for us - switching her from the enbrel could mean the return of swelling and pain, or it could mean total relief and remission! Stelara has an incredible response rate - 70% of patients show a 75% reduction in symptoms in the first 4-12 weeks of treatment! We prayed over the decision and felt peace about moving forward. The prescription was sent to our insurance's prior authorization department (Eric's company was bought by another company in September 2018 and our insurance switched from carefirst BCBS to anthem BCBS). We had never had a problem getting coverage for her meds - and I was totally unprepared for the journey we were about to embark on. Over the next 6 weeks, her medication was denied multiple times for a variety of different reasons. Every time we called the insurance company they told us they never received a prior authorization request, they had no idea what I was talking about, etc. I finally asked for a nurse case manager, and while she doesn't actually help with what we need , she was a third party on the line every time I called the insurance company. Last friday, the 22nd of February, the nurse case manager called me and said she had called to check on the drug approval and they said there was no record again. But this time I had her! She escalated our case to a manager, who apologized profusely and said he was going to work on it over the weekend. I'll be honest - I was not holding my breath. Through this all we were praying constantly, struggling to trust that our God loves our girl even more than we do and that none of this was out of His control. The bumps spread to another finger, and she was probably now lose that nail as well. It is so hard to see her is pain and hurting, knowing that there is nothing I can do but hold her and cry with her. Walking hurts at times because her heels are cracked and often bleeding. We pray for healing, for pain relief, for peace. And we wait in Him, on His timing, because I firmly believe that our girl is going to soar! On Monday February 25th, we received the news from our ped rheumatologist that the medication was approved!! The injection is being over-nighted to our house so that I can give it to her on Friday night. We are praying that it works and stops the spread of her psoriatic disease, that her joints do not flare, and that she does not lose her fingers. We also have to watch her eyes closely as she has had uveitis (inflammation of the middle layer of the eye) and when her arthritis flares she is at increased risk of that returning - it can cause permanent blindness. But He is faithful, and we cling to Jeremiah 29:11 - "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to have you hope and a future."
