My Autoimmune Story: From the Beginning

I have been contemplating over the last couple days if I should even write this post. I know I share quite a bit about my life on this blog but, I don’t  know what the limit should be. I then realized I should share my story because maybe there is someone out there that is going through the same thing and would like to know they aren’t alone.

I never thought I would have to type these words: my autoimmune symptoms are back.

Before I get into what is happening now I need to back track about 14 months and tell you how this all started.

PicMonkey Collagemyautoimmunestory

The Beginning

It was the end of September 2012 when I first noticed some raised red/pinkish bumps on my legs. I thought they were mosquito bites because they were itchy and looked like mosquito bites. I was very prone to mosquito bites so I didn’t think twice about it. Over the course of a week the “bites” would come, disappear 12 hours later  and then re-appear again. After that first week I started  thinking maybe they aren’t just mosquito bites. I made an appointment with a nurse practitioner. She told me that it was a bacterial infection without really even examining me. I was given some cream and told to just apply the cream to where I was itching. The problem with that is I was having to apply that cream ALL OVER MY BODY! It didn’t make sense but, I didn’t know what else to think. This happened on a Friday. Over the weekend the “bites” didn’t get better, if anything they got worse. Monday morning came I called the N.P. back to make another appointment because I was convinced I did not have a bacterial infection. It didn’t make any sense. Luckily for me the N.P. wasn’t available that day so I told the receptionist I don’t care who I see I need to see someone, I am miserable. They were able to get me an appointment that same morning with a Dr. (who is now my primary care doctor).

Initial Diagnosis

The dr. right away knew what those “bites” were: HIVES. She then went through a list of questions for me, to find out why I am getting the hives.  The doctor’s conclusion was I was allergic to almonds. I had just started drinking almond milk and soon afterwards (but not every time) my throat would feel itchy and kind of feel thick (if that makes sense?). At the time of the diagnosis that made sense. The doctor ordered a tree nut allergy blood test to rule out any nut allergies. She advised me to take Claritin and sent me on my way. Two days later, I was still miserable, my hives were not going away and the Claritin was definitely not working. The doctor then referred me to an allergist.

Final Diagnosis

I saw an allergist a couple of days later. By this time I started having other symptoms: swelling of the lips, eye lids and hands {which I later learned was angioedema} and was almost completely covered in hives, from head to toe. At the end of my appointment, he concluded that I might have autoimmune urticaria (hives). He told me to start taking Allegra (2X 180 mg), Singulair and prescribed an antihistamine (Hydroxyzine 4x 50 mg) to take daily. He ordered some blood work. Over the course of a couple of weeks I had gone back to my allergist about 3-4 times and was pretty much calling him every morning because none of the drugs were working. He eventually put me on Cyclosporine (an immune suppressant) after a couple of weeks of the other drugs not working. He was trying to avoid putting me on this drug because it is a very powerful drug and can cause damage to your liver and kidneys and makes you susceptible to other diseases so, I had to be closely monitored. I hated being on Cyclosporine, I had gotten sick twice within a 3 month period, my hair was falling out (more than usual) and I had to limit the time that I spent out in public in fear of catching something from someone. Since I was on this drug if I were to get really sick my immune system wasn’t that strong so I wouldn’t be able to bounce back as quickly which could cause more issues. My blood work came back positive antinuclear antibodies (ANA) which confirmed that it was autoimmune and could also mean a possibility of Lupus. He referred me to an Rheumatologist just to rule out Lupus. Met with a Rheumatologist the following week. He examined me, told me that in order to be diagnosed as having Lupus I had to fall under 4 categories on the Lupus checklist. I had 3 out of the 4 so, according to him I was okay. To completely rule out Lupus he did order some more comprehensive blood work, just to make sure. All blood work came back fine.

My final diagnosis was having Autoimmune Urticaria (hives) and Angioedema.

I was on the following medication: 2x (180mg) Allegra,  4x (50mg) Hydroxyzine,      

3x (100mg) Cyclosporine and 10 mg Singulair

PicMonkey Collagedefinitionofautoimmunehives

PicMonkey Collageangioedema

My Symptoms

Even while I was on all these medications, I was still having the hives and the swelling of the lips, eye lids and hands. Some days were better than others. Just as I started feeling better, the next day it would be worse. A good day would be waking up without my lips looking like they were stung by a swarm of bees. Within a month of being on cyclosporine I was actually feeling better. My allergist starting slowly weaning me off the cyclosporine. It might have been a few days when my symptoms started back again with avangage. Of course this happened the week of Thanksgiving when my allergist was off the whole week. I went to urgent care. They couldn’t do anything for me because I was on Cyclosporine and they didn’t want to mess with that drug at all. I felt so helpless. I was miserable. I was covered in quarter-size raised welt looking hives that were extremely itchy and uncomfortable. I had to see my primary doctor the next day. She couldn’t do much but, put me on a 6-day steroid. I literally gained like 5 pounds during that time. I was constantly eating! The steroid did calm my symptoms, it didn’t make them go completely away but, it was at least manageable. Then a couple weeks later, I woke up one morning and had absolutely no hives, no itchiness, no swelling of anything. I couldn’t believe it! I had been battling with this for over 2 months and now they were gone! I will remember that date forever, it was December 8th, 2012. I thought that was the end of it even though I knew my symptoms could flare up at any point with no warning and not knowing how long it will last or be gone for. I felt like I had my life back on that day. I felt normal. I felt like I could be a Mother again to my son.

I wish that was where my story ended.

Unfortunately, my story continues……..


***DISCLAIMER: I am not a doctor, nurse, or any other medical professional. This is what I experienced and went through.

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12 Responses to My Autoimmune Story: From the Beginning

  1. Marlene says:

    I did not know the extent of your symptoms. Sorry to hear about it. Do they know the cause?

  2. I can’t imagine how uncomfortable and frustrating this would be! 😦 I’m sorry to hear that your symptoms are back and I hope that they go away soon. Thank you so much for sharing your story!

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  4. I’m so sorry to hear about your autoimmune condition and that your symptoms are flaring up. I hope they go away soon!

  5. This all sounds incredibly frustrating and tough to deal with. I’m sorry to hear about it but am glad you shared. I’m sure there are other people out there who battle it, too.
    I hope the systems go away soon, and I hope they can help come to a conclusion rather than putting you on meds in hopes that they help.

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