Wednesday, May 27, 2015

A Diagnosis

So I haven't updated you all on my hives situation.  It got worse, which turned out to be a good thing.  As long as the hives looked like normal hives, the doctors kept putting me on prednisone waiting for it to clear up. 

Then the hives returned even while I was on the prednisone, and turned into these beauties that were bleeding under the skin.  I can't describe how painful they were.  They were hot, they burned, they were swollen, and it hurt to have my clothes touch them.  At first I wondered if they were shingles, because I had chicken pox when I was a kid, but they weren't.  I drove over to my doctor's office while they looked like this, demanding something be done.  I was ready to check into a hospital.  I didn't know what to do and clearly, the steroids weren't working and the doctors didn't know what they were. 

They got me in with an allergist who also specialized in immunology.  This was my lucky break.  When the doctors at this new office saw my hives, they said, "those are not ordinary hives."  To which I replied, "of course they're not, I'm special."  Good thing my humor hadn't left me yet.

The doctor then began to pepper me with non-stop questions on when they started, their changing character, any medications I'd been taking, known allergens, foods I'd been eating, etc.  He clearly had seen these before, and was just trying to narrow down which illness I had.  He said he narrowed it down to four different auto-immune disorders, but wanted a biopsy of one of the hives to verify what it was.

So a hole in my leg and a week later and they had the results.  I have 
Leukocytoclastic vasculitis

They think it might have been triggered by the statins I was taking for my cholesterol, since the hives developed four days after I began taking them.  Leukocytoclastic vasculitis is a very rare side effect of the particular statin I was on.  I found an NIH study on people who developed this disorder while taking statins.  Most people improved a couple of weeks after being off the statins.  Then there was another group that took 6 months to 2 years to get completely better.  Clearly I'm not in the first group. 

Since my immune system is still going nuts, thinking it's under attack, I have to go on immuno-suppressant drugs to calm it down.  I also have to have blood tests every two weeks like clockwork to verify that the drugs they have me on aren't harming my kidneys or liver, and to also verify that the leukocytoclastic vasculitis hasn't progressed to my internal organs, because that could kill me. 

It's such a weird thing to not feel sick, yet know I have something that could be deadly.  It doesn't feel real.  I feel fine.  So far the hives haven't come back, and I'm not noticing any side effects of the new medicine, well besides getting hot and flushed on occasion. 

So, now with the diagnosis in hand, and knowing I'm moving, they had to transfer my case to another immunologist in Buffalo when I move, all while continuing the bloodwork every two weeks.  So I spent the better part of one day, faxing medical records and giving background information to the new doctor's office in Buffalo, then did the same thing with a lab up there to continue my blood tests, also scheduled tests for while I'm still in Maryland, and because I can never have anything be simple and normal, I also had to find a lab in Maine, where I'll be on vacation for ten days in July, to do blood tests.  Everything is now in order, all the labs know when to expect me and who to send the results to.  Organization is a good thing.  :-)


CyberKitten said...

Yeah....! You have an actual diagnosis!!!! It's good to know exactly what's going on. Just a shame it took so long.

Anonymous said...

sheeze, glad it's getting under control.

Vancouver Voyeur said...

Yes, it's good to know what it is, and to have medicine that seems to be working.

Michele said...


OldLady Of The Hills said...

Good Lord! I'm glad you finally found out what it is and that they can do something about it! You are so organized! I cannot believe you've got everything set up for your move and your vacation! Hoping it ALL clears up soon, my dear....!

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