My Autoimmune Story: The Saga Continues (part 1)

When I created this blog I hoped I would never have to write about my struggles through this condition. I had it in my head that I would never have to worry about my symptoms re-appearing, even though I knew that they can at any time. I guess I was being optimistic.  And here we are now, writing my 2nd post on this and I can’t believe that I am having to go through it over all again.

Since it has been more 2 weeks since I last posted about my autoimmune story I thought I would update everyone on how I am doing because I know you all are dying to know what has been going on {insert sarcasm}.

I broke this post up into 2 parts. I figured who would want to read a 1,400 word novel on my autoimmune condition. I know I wouldn’t and I am the one going through it.

thesagacontinuescoverphotopart1

Making an appearance

I first saw my symptoms reappear on Tuesday, December 10th.  I woke up and my left eye was almost completely swollen shut with a few hives on my upper eyelid but, that was all. I thought it was just a fluke thing and that would  be the end of it. Well, I was right they didn’t appear the next day but, that wasn’t the last I would see of them. I wake up Friday (12/13/13) morning with my right eyes’ lower lid swollen and raised welt like hives over my legs and torso. This wasn’t good…..I called my allergist to get an appointment ASAP. Of course with my luck he wasn’t in that day and neither was my primary doctor so I was forced to see a nurse practitioner. I knew she wasn’t going to be able to help me but I was so desperate I just needed to see someone. All she told me to take was my hydroxyzine again when my hives get itchy and continue my Allegra (2X 180 mg) until I get an appointment to see my allergist. {I had already started taking the Allegra again once my symptoms re-appeared} Saturday came with no visible symptoms. I was hopeful. Sunday (12/15/13)  came and I hade lost hope. Sunday morning I woke up and my autoimmune hives and angioedema were definitely back.

Fast forward to the end of week one and I am back on Cyclosporine. I saw my allergist that Tuesday (12/17/13) and told me to switch from Allegra to Zyrtec (thinking maybe that would work better for me) and to continue taking hydroxyzine 4x a day. Well, within the next couple days my hives got worse and my angioedema was making an appearance every morning and even hives were appearing on the bottom of my feet. Since the current medications weren’t providing me with any relief what so ever I knew what the next step would be…..

Worst nightmare

Having to go back on Cyclosporine. My allergist instructed me to start with just 100mg each day and to increase by 100mg a day if I still didn’t notice a difference and to not exceed 400mg a day. Well, by the third day, I was on the drug, I was up to 3x 100mg daily.  On the 7th day of being on Cyclosporine I was up to 400mg a day. It was on Christmas evening that I had to make that call because I was so uncomfortable. Christmas night was probably the worst night that I have had to go through. I just wanted to rip my skin off just for some sweet relief from the burning and itching. I really don’t remember from last year the burning/hot sensation that the hives and angioedema have caused this time around. The burning sensation is the feeling you get when you are really cold and then take a hot shower, that is how my skin feels all over my body. According to my Allergist it is the histamines that is causing that hot/burning sensation on my skin.

My Breaking point

The morning after Christmas when I woke up, after an already rough night, my lower left arm and left side of my face was swollen. You couldn’t really notice it when looking at me but, I could feel my skin become tight. I realized I needed to do a little more research on my own since these medications aren’t giving me much relief. Don’t get me wrong I do feel better than the first week of my flare-up but, I still get itchy, wake up with either my lips or eye lids swollen and get a hot/burning sensation on my skin. I am just getting frustrated.

Next post: Part 2: Finally some relief!

If you want to know my story from the beginning, read this post.

Do you know anyone that had/has to go through this or something similar?

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7 Responses to My Autoimmune Story: The Saga Continues (part 1)

  1. Marlene says:

    Is the paleo working?

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