Rheumatoid Arthritis and complications of the eye

uveitis and rheumatoid arthritis

Ok, so eye test yesterday. To check why my left eye is watering constantly.  Doesn’t sound serious, but with all the vision problems I’ve had (uveitis, scleritis, iritis, blepharitis, cataracts, glaucoma) it’s important to be sure.

I also have yet another subconjunctival hemorrhage (big red blood spot on the white of your eye).  I get a lot of these. They are just another thing that gets ignored, even though recurrent subconjunctival hemorrhages can be a sign of some very nasties, particularly in the context of severe Rheumatoid Arthritis.

My GP is great, and excellent for emotional support and quite frankly I need that most sometimes, but he does sweep things under the carpet.  Things like the choking on food for almost a year before he did anything about it.  Things like ignoring my gynecological symptoms for a year before referring me on.

Admittedly there are always so many issues, I always have a laundry list. And then I get tired of doctoring, so I just let it slide for a while.  But if I went to the GP with one issue at a time, as they prefer, I would be there a few times a week.  So things get skipped over, always to deal with something more pressing.

I have been having these eye bleeds for many months.  They have gotten to the point that no sooner has one healed than another one happens.  It takes about a week for a minor one to clear up, more like two weeks for a more major one.

They ARE harmless, if they happen occasionally.  When they happen every couple of weeks they can be a sign of very high blood pressure, and/or blood clotting disorders.  Worst case, they can be a sign of serious blood disorders, including leukemia.  I know this, because I’ve been down this path before.  Especially when you add to it a lot of bruising.

The optometrist looked at my arms and commented on all the bruises. These are always put down to prednisone. But I’m covered in bruises.  BIG bruises.   I showed her a few more on my legs. They just appear for no reason, no injury.  Just normal to me, but she was alarmed.

Last time I was like this, my GP ran all the clotting factors and the leukemia bloodwork. He was worried too. I could see it. And because I’ve been seeing him forever, and he knows me well, he was honest.

But it was all clear.  Clotting factors fine.  No cancer.

Excellent!  Huge relief.

Except, nothing changed. I still have high blood pressure, I am still getting regular eye hemorrhages, and I still have lots of pretty horrid looking bruises. They are nasty bruises. And I didn’t hurt myself, or bang myself up.  They just come up for no reason.  All the time.

So I need more blood work.  To check again.

More blood work. *sigh*.  I just got all my bloodwork done yesterday. Now I need more.  I know all the tests will come back normal.  They always do.  I just can’t worry.  I can’t bring myself to care.

The bruises and eye bleeds are because I am on daily aspirin as a blood thinner. To lower my stroke risk.  I need to stop the aspirin to stop the eye bleeds and the bruising. But first, I have to assess my stroke risk.  I know my GP won’t have an answer for me.  He’ll let me decide.  He’ll tell me that its really unlikely that I’ll have a stroke.  But then he’ll say ‘keep taking the aspirin, just in case’.

Because he doesn’t want me to stroke out, because he told me to stop taking the aspirin.

So I need to have that brain MRI that I have been avoiding.  To see if there has been any progression on those delightful dead spots in my brain.  If there have been more strokes.  Or not.

Or, if there has been more demyelination. Which would put Multiple Sclerosis firmly back on the table.

Which risk is higher?

Which is better?

Too thin blood, causing bruising and hemorrhages?

Or too thick blood causing strokes?

Or neither?  Is any of it really a risk at all? Should I care?

I really don’t care right now. And I probably don’t need to.  Or have I become so accustomed to signs and symptoms that I am ignoring things I shouldn’t?

I’m tired.

I don’t want to think about these questions anymore. I want to be like my friend, who’s biggest problem –  as in talking about it for DAYS and DAYS on end –  is whether it’s worth spending more for a UHD LED TV or whether FHD is good enough.  That’s a GOOD problem.

I gave her my opinion. I’m a tech head. I like my toys. I like researching specs. But I wish that something that simple (with no REAL consequences) were the kinds of questions that occupied my thoughts.  I decided I wanted a new TV. I looked at the specs. Decided what was important to me. Decided how much I was prepared to spend.  And bought the TV the next day.  All done. No stress. No drama.  I’m watching it now. It’s an awesome TV.  Why can’t my body be the same way?

Instead I get to spend my time deciding whether I need blood thinners.

I don’t know.  I don’t want to care.

If I keep taking blood thinners, I’m risking hemorrhages.  Damage to my vision and internal organs.  Not to mention bleeding out should my clotting factors be too low.  Ulcers, stomach bleeds. I’m no longer taking any nsaids (never allowed to again) but I do have gastritis.  Aspirin increases the ulcer risk, a gastric bleed.  It reduces the chance of a stroke caused by a blood clot, but increases the chance of a stroke caused by a burst blood vessel, a bleed in the brain.

Is any of this likely?  Probably not.  Not likely at all.  Aspirin is very safe. I should probably keep taking the aspirin.

Because if I don’t take the blood thinners, I am risking a stroke from a clot.  My blood pressure is high. My cholesterol is high.  These things are gifts from prednisone.  Even a moderate stroke will be disabling and irreversible.  Pretty serious consequences there.

No one will make a call on my stroke risk.  No one’s talking.  No one wants that responsibility.

So I’ll schedule the MRI. The one I was supposed to have back in November. Cos I love the whirrrrs and cliiiiicks and thumpa thumpa thumppppp! That the machine makes.  Soothing.

And I’ll get MORE blood work next week.  Cos I also love those little butterfly needles.  And Karen, the phlebotomist, and I haven’t had a good chat in, oh, two days.  Everyone has a close relationship with their local phlebotomist don’t they?  I see her more often than most of my friends.  And you KNOW I just want to write down the word ‘phlebotomist’ one more time.  Because I can.  Phlebotomist! Ha!

And I’ll talk to my friend some more about the difference between UHD and FHD, and screen resolution and refresh rates and 100htz vs 200htz….if she brings wine.  Cos that’s simple. And let’s face it, it doesn’t matter.  Pick your budget and buy a damn TV.  They are all good.

And the watering eyes?  Blocked tear ducts.  I have to go to my ophthalmologist and she needs to numb my eye and unblock my ducts.  I think she can just syringe them out. Minor procedure.  Simple.  But I can’t get an appointment for six weeks. That’s a long time to have a crying eye.  So I called my optometrist.  If she writes a letter to my ophthalmologist stating it’s an urgent problem, they can schedule me in sooner.  Cos if I have to add another procedure (8 days into the year and the procedure count is climbing fast) I may as well have it done sooner.

So multiple phone calls to ophthalmologists. To receptionists.  To optometrists.  Asking politely for their help. Their assistance.  Groveling. Begging. Always asking some faceless person to please take ten minutes to write a letter for me. To please be kind. (No wait, that’s their job!) To help me.  So that I may access a service more quickly.  So that I may have less pain. So that my vision is protected.  (The blocked ducts aren’t serious, but it’s an infection risk).

It feels demeaning.   Like my full time job is begging.

I may as well make an appointment with my GP for next week. Because when he gets the letter from my optometrist, he’s going to call me in, and order the bloodwork.  More appointments.  More labs. More phone calls.  That’s my day.  That’s my life.

Oh and I need glasses for reading.  That’s normal at least.  Just an age thing. I’m 45. Reading glasses is pretty common right about now.  I revel in being ‘common’.  So I’ll go down and choose some next week. My daughter is most jealous. She LOVES glasses. She wants glasses.  I’ve bought her a few pairs that just have plain glass in them.  They’re a fashion item to her and her friends.

So I’m finally going to be on trend.  There’s the upside.


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