Hello

Hi, I’m Kristen.  I’m 24 years old and I live in the Cleveland, Ohio area.  I was recently diagnosed with lupus April 19, 2012. 

When I first went to my rheumatologist, I went with chronic pain and fatigue.  My boyfriend’s dad, who is a rheumatologist, thought I might have fibromylagia or some other autoimmune disease.  My family has a hereditary autoimmune disease, CAPS, Cryopyrin-Associated Periodic Syndromes.  Well, I tested negative for CAPS.  The RA thought there was something definitely going on with me.  She surmised rheumatoid arthritis and osteoarthritis.  She ordered blood work and I definitely had a lot of inflammation so I was put on plaquenil right away.  When I visited her again, she told me I also have lupus. 

I would start taking methotrexate (4 2.5 tabs for 2 weeks, then 6 2.5 tabs after that) once a week.  I would also have to take folic acid to combat the side effects of methotrexate.  I was also put on prednisone (calcium supplements to combat the steroids) and many other steroids.  I also found out I have osteoarthritis in my neck.  (I was in a car accident in 2006) so I take muscle relaxers (Flexeril) for that.

Well, the methotrexate has not been so fun.  I take it on Friday nights because I don’t work on Saturdays.  They have gave me nausea, dizziness, fevers, and bad fatigue.  I’ve seen my doctor twice since I’ve been on the methotrexate and my doses have been upped more and more.  I’m now on 9 2.5 mg/1 week.  So I take a lot of medicine.

I was doing well for a while.  I was starting to get more energy and mobility.  I went on a trip with my boyfriend to Switzerland a few weeks ago and it has put me in the worst flare to date.  I’ve been so tired and in so much pain.  The entire time on vacation my feet were swollen but I battled through it.  When I got back, I had never felt so bad.  I’ve been missing work lately because I’m in too much pain or too tired.  My inflammation levels are at their highest to date and I’m back on prednisone, after being off it for about a month.

Right now, I’m in pain.  My neck and back are killing.  I’ve been grinding my teeth at night so I’m having a terrible headache too.

Also I recently found that my endometriosis is acting up again because my birth control wasn’t being absorbed as well because the methotrexate is so strong.  So, now I’m flared up inside my lady bits and I’m using the Nuvaring.  The Nuvaring has been causing me to cramp.

After this amazing trip to Europe, I’m really paying for it now.

Anyways, so hello and welcome.  I’m here to write about my illness and track what’s going on.  I’d like to meet some other people with lupus and see how they’re dealing with it.  For now, I’ll take my meds, rest, and hope for a painfree day.

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