All in the family — autoimmune disorders

It says “cytotoxic” meaning it is POISON!!

One of the main foci(?) of this blog is to discuss what is going on in my life right now.  In early June 2012 (right before my wedding) my eyes “exploded” with black floaters, weird “confetti” lights, and blurry vision.  I was literally driving down the highway at 80 mph and out of nowhere this huge black spot came into my field of vision in my left eye.  I initially thought it was a huge black bug.  But it stayed.  Right in my field of vision.  And bounced around like a beach ball.

I have had migraines since I hit puberty.  Nasty, days long marathons at times.  I have tried all the major medications on the market.  After 17 years of dealing with this shit, Treximet works the  best.  I can pop one of those and it will go away within an hour or two.  A few days prior to the invasion of the black spot, I had an appointment with my neurologist because my migraines were increasing.  He increased my daily dose of topamax to help keep my irritable brain calm.  So I thought it was a neuro issue.

So after driving to work, telling the work people that I had this weird floating black beachball in my eye, I called my neuro who referred me to an actual eye doctor.  Not one that just prescribed my contacts.  I saw an eye doctor who literally said “I have never seen anything like that in my entire career”.  That is just wonderful.  Fantastic.  Nice bedside manner, doc!

So he sent me to a specialist in downtown.   Thank God that doc was much more confident, calm and had an idea of what was going on.  I had to endure some photography of the back of my eye, in which they quickly inject a concentrated sodium solution to highlight the blood vessels of the retina, and it made me vomit violently.  But the doc came up with a diagnosis “frosted branch arteriitis”.  Basically, the vessels in both eyes were inflamed, leaking and bleeding.  But that was just a symptom of a larger, systemic problem.  I had to undergo testing to determine what the main problem was.

So I had a slew of bloodwork, scans, xrays done.  And three months later the diagnosis is….presumed ocular sarcoidosis.

What the hell is that?

Basically my body hates me.

Sarcoidosis is an autoimmune disorder, meaning that instead of your body fighting the evil bacteria and viruses that invade your body from the outside, it decides to fight you.  In rheumatoid arthritis, it attacks the joints.  With lupus, it can be connective tissue.  With sarcoidosis, it can be any tissue in the body.  ANY TISSUE IN THE BODY.  They can usually do a biopsy (take a tissue sample) and see on a microscope the damage that is happening, but mine is in the back of my eye.  And no where else.  It shows up in my bloodwork, and I have other symptoms of the disease, but until it shows up elsewhere on scans, I carry the diagnosis of “presumed ocular sarcoidosis”.

The treatment?  First line is steroids.  I hate steroids.  With a passion.  I was started at a high dose.  Usually, if you have a strained back or pneumonia, you are given a dose pack of 20 mg over 6 days.  I was started at 60 mg per day.  The inflammation in my eyes was that bad.  At the end of June, my eyes looked better, and the doc attempted to take me down of high dose steroids.  My eyes violently rebelled and the spots came back.  And up went the steroids.  Side effects of steroids are mood swings, weight gain, swollen face (moon face), risk of diabetes and joint damage with long term use, acne.  Fan-fucking-tastic. Every bride’s dream.

I got married June 23.  That’s another post.  Mid-July my mother in law passed away suddenly.  That’s another post.  I went back up north to help my husband and his family in their grief.  My condition deteriorated.

Second line in treatment? Chemotherapy!!  So steroids weren’t working.  My eyes were worse, my fatigue worse, pain in my joints worse.  Breakout the poison!!  I started on methotrexate orally in August.  Its just a baby dose of chemotherapy that they use for cancer.  They don’t know why it works on autoimmune conditions, but it does.  They use it for RA.  But it sucks.  The side effects are awful.  I literally didn’t move from my bed for four days.

In addition to sarcoid, I have had fibromyalgia for seven years.  My grandpa (mom’s side) has fibro as well. My aunt (dad’s side)  has RA and lupus.  It is thought that my grandmother had RA because she had deformed joints.  My cousin has vitiligo.  From what I’ve been reading, sarcoid is genetic.  There is a 1 in 5 chance that one of my direct relatives will develop it.  So I’m looking at my daughter.  Hoping that she is spared this carnival.

** Update October 6, 2012**

I found out that the reason I deteriorated so quickly while I was in Delaware after the death of my mother in law was not just the cigarette smoke that permeated every single item in the house, and my father in law’s chain smoking, the house had a major toxic mold problem in the basement.

**Update April 30, 2013**

Still not back to baseline.  My eyes have gotten worse and better a few times now.  I lost my health insurance and my job, so I can’t afford the treatment that the doctors want to try.  I have had multiple steroid injections into both eyes.  I’m still on steroids (but down to 2 mg) and the methotrexate has increased to 15mg/week.  And I inject it now.  The side effects of the steroids are absolutely awful.  I have gained 50lb (I think that is the combined effect of being on Lyrica and the steroids and not having Topamax to even it out).  My blood pressure is usually sky high and I am on blood pressure medications.  The blood pressure meds cause even worse fatigue than the methotrexate.  Its a never ending cycle.

Good news is that my last few doctor’s appointments weren’t a total disaster.  If my eyes show continued improvement over the next three or four visits, they might take me off of the steroids all together.  They cannot increase the methotrexate dosage because my liver enzymes are elevated.

So I take it day by day.  I didn’t think that I would be this sick for this long.

**Update September 5, 2013**

Since my grandfather passed in June, my mom has been keeping in touch with some of the distant family that made it to the funeral to pay their respects.  She was filling some of them in on what has been going on with me the last year or so.

I was absolutely floored to learn that my second cousin has occular sarcoidosis.

I always knew that autoimmune disease have a genetic component…and all this time I’ve been blaming my dad’s side of the family.  But lo and behold, the side of the family that gave me fibro is also the one to give this lovely condition to me.

I have yet to have any contact with my cousin, she lives in Alaska, but I do know that she has had steroid injections in to her eyes too.

Very, very interesting.


8 thoughts on “All in the family — autoimmune disorders

  1. Pingback: Return to work? « true life is stranger than fiction..

  2. Hello, I don’t want to be a lyme bore (ok I am) But have you looked into lyme disease as a possible cause of *everything* I’ve heard of someone who only has eye problems as a result of lyme and fibromyalgia is the most common thing lyme is misdiagnosed as. Also, people with lyme are highly sensitive to mould spores.

    Sorry if you’ve already looked into this. 🙂

  3. I’m not sure if lyme disease was part of the 12 vials of blood they removed from me when they were doing diagnostics. I’ll have to look into that. Thank you for your input.

  4. Pingback: Thank you Big Pharma!! « true life is stranger than fiction..

  5. Hi. I have started reading through some of your posts and wanted to let you know that I somewhat feel what you are going through. I also have eye inflammation issues (had steroid injections and was on methotrexate as well). I haven’t sorted myself out, but placed all that circus at the back of my mind for the meantime because I just don’t know how to deal with it anymore (I just take RA medications daily to keep the pain at a bearable level).

    Hoping you find the strength and support to stay positive through all this. Wishing you all best!!!

  6. Not everyone with an autoimmune disease has a family history of autoimmune disorders, but many people do. It’s rampant in my family, though the specific diseases vary.

    Your comment, “My body hates me,” made me laugh because I’ve said that many times. When I was teaching, I told my students, “I’m allergic to myself.” Oh, the ways we try to simplify such a complex issue.

    I wish you success with your current disease management. You’re a brave woman!

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