New Diagnosis

| January 30, 2015

So two days ago I had an angiogram to see why my finger was not getting any blood flow to it.  Doctors thought it might be an embolism or blood clot.  Following the angiogram they found that there was not a clot.  That was good news.  My heart and lungs both looked great.  I’m happy about that.  After all, I swim, bike and run all the time.  I know I’m in good shape.  Something in my body should also be in good shape after everything I do.

 

The bad news, is I have vasculitis.  This is an inflammation of the blood vessels in the body.  Mine decided to go to my right hand.  Specifically my pinky and ring fingers.  It’s very painful.  It feels like someone is holding a match to my fingers.  They burn all the time.   They hurt.  They are stiff and I can’t use them.   It’s been frustrating, but now we have a diagnosis.

 

So, to fix it, I’m on 3 days of IV steroids.  500 MG a day.  Today was my first infusion.  I’m lucky because the nurses are coming to my house for the treatments.  So at least I’m comfortable as my body gets filled with these steroids that can help so much but make you feel so awful.  Yes, the side effects are terrible.  Blurred vision, headaches, stomach aches, irritability and sweating.  I have two more days of IV’s.  Then I start on a new medicine called Cell Cept.  This is used in kidney transplant patients but they have had a lot of success with autoimmune patients on this as well.

 

I’m hoping all of this will relieve the pain in my hand and help me to get back to my normal activities.  I miss working out and training with my friends and coaching my youth triathlon team.  I’m ready to get back to things.

 

In the meantime, I have to keep checking my glucose with a glucose reader and I’m constantly checking my blood pressure because it jumped so high when this all started on December 12th.  There has to be a correlation between the vasculitis starting and the blood pressure jumping up.

 

More updates as my infusions continue and I start this new drug.  Maybe what I’m going through will help one of you out there.  At least I hope it does.

 

Thanks for reading.

 

Joella

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Category: Autoimmune, Blog

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