Rheumatologist Appointment Update

Yesterday, I met with a new specialist that I will be adding to my team of doctors for my next pregnancy.  He was really great and I felt like he was willing to sit and talk with me for as long as I needed. He started by asking for my history and how I have come to this point and the entire time he took notes.  I’ll start my update with the good news and end with the not so good news.

I was must excited to see him and talk about IVIg treatments, which he was VERY familiar with. He said that they are great because they have basically no side effects, but the FDA has not approved them for many treatments and that makes it hard to have insurance cover it. They do work for auto immune issues but it’s hard to get it covered. Also, because the insurance may not cover it they are very expensive out of pocket. I’m not talking like an expensive steak dinner, but like a used car expensive. The treatments run around $7,000 and they have to be done on a regular basis, around every 2-3 months. He said that if there is a less expensive treatment that works insurance  would not pay for it. We discussed using the treatment in pregnancy and he said that I would be a candidate for using it since my last pregnancy did not make it full-term with the treatment I was already taking. He also said that he was almost positive that my insurance WOULD COVER IT for the duration of a pregnancy. THAT IS AWESOME! From what I have read it will help prevent Pre-eclampsia from setting in so soon (or at all) and it helps the kidneys and my clotting disorders. He suggested I call and make an appointment with the MFM I will use and make a treatment plan before we start trying and ask them to do at least one dose before we try. 

He asked me a bunch of questions about symptoms I have experienced and problems I have had and he looked at my last lab work. He said that I do have Lupus because of some of the things we talked about, like my hair falling out and being so tired (among other symptoms and my lab work). He also said that my anti-bodies are as high as they could possibly get which is why I developed problems so soon in my last pregnancy and that I would need to add the IVIg treatments next time. He prescribed a new medicine and said that it should help my kidneys, my hair, and give me more energy. Most of all, he said it’s important to start taking something now to prevent the Lupus from getting worst and I am very lucky that with my numbers it’s not worst. 

It was refreshing to have someone sympathetic to my problems and he did not make me feel guilty at all, but was reassuring that it was because of the lupus. No one has ever given me a hard time for getting so tired so much but it’s a horrible feeling to be 26 and not able to go and go like most my age. Or have a list of things I want to do in one day but only able to finish half my list and fall asleep at 8:00 that night. I know most might be disappointed that a pill is being added to the daily treatment but I am actually excited to start feeling better.

He also looked at my kidney function and did say that it’s low but did not say anything to the fact that I should not try again. He just said that next time I need the see the MFM monthly and my local OB weekly. I’m looking forward to all the upcoming doctors appointments and getting a great team together. I hope you will continue to read my updates and pray for me, Matt, the team we choose, and most of all the baby that God already knows we will welcome into our family. 

I Samuel 1:27 For this child I prayed; and the Lord hath given me my petition which I asked of him: KJV

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