mama whose curiosity knows no bounds

Posts tagged ‘Plaquenil’

Long, winding road – my lupus journey #9

I didn’t expect my blog posts on my lupus journey would be this long.  Boy, it’s been indeed a long, winding journey. And this probably never ends.

OK. Plaquenil.  Plaquenil (hydroxychloroquine) is categolized in “anti-malarial drugs”.  It WAS an effective medicine for malaria (now most, if not all, malaria parasites are Plaquenil resistant), and mass use to prevent malaria led to find its effectiveness on lupus.  It primarily acts on dsDNA receptor (TLR9) on one of the immune cells (dendritic cells – cells that tells other immune cells what the invaders are), probably preventing dsDNA from being presented to immune cells and being attacked.  So this makes sense this medication works specifically on lupus, not other autoimmune diseases.

Its side effects included upset stomach and nausea, but mine went away in a week.  But there were long-term, scary side effects – retinopathy (breaks down retina, causing blindness).  This side effect is extremely rare, but it DOES occur.  Because of this, Plaquenil is banned in Japan, for example.  So lupus patients in Japan cannot access this moderately but surely effective lupus specific medicine!  Rheumatologist #2 told me that my eyes need be checked regularly, but didn’t explain what need be done.  Probably eye doctors know.

Luckily, my optometrist did.  He was “clicked” when he read the list of my medications, entered by his assistants.  He told me that I am at risk of retinopathy and I need to be monitored at least every six months.  They even had a specific test, called “Plaquenil test”.

First I need to sign that this test will cost 80-something dollars and it would be billed to my health insurance (not vision insurance), and if they didn’t cover, it was my responsibility to pay the entire cost.  Pretty normal for any clinic, huh?  Then I sat down in front of an equipment with a circular opening. There were two places for chin and forehead rest.  One for each eye to be tested.  The technician asked me to cover one of my eyes with an eye patch, looking like a pirate.  She installed a lens to adjust for my nearsightedness and astigmatism, then I rested my chin in front.  I hold a clicker on my right hand.

At first I practiced.  I was told to look in the center and when I see a red light anywhere at any strength, I clicked.

Then I remembered that this was a test for macular degeneration to test vision field.  When neurologist #1 told me I have macular degeneration, I had this test and found to be okay. That was easy.

But the actual Plaquenil version of the test was much longer.  With fatigue, wrist pain, and inattentiveness, I felt more like being tested for ADHD and patience, not vision field and I was miserably failing.  I could feel that my attention was disturbed and I clicked when the light was not on.  Oh, this is called “impulsiveness”!  My thought was twirled around ADHD terms and test for ADHD, completely losing focus on the test in front of me.

Some how, maybe 5 minutes, the test ended and I switched the eye patch. Again this was hard.  I had very hard time keeping my neck upright.

Fortunately the test ended somehow and later, the optometrist told me that my vision field was normal. I didn’t like the idea of taking it in every six months. But if you don’t want to lose vision, you have to take it.  I’m glad I had a very knowledgeable and capable optometrist.  I chose him primarily because I had VERY bad nearsightedness and astigmatism and wanted contacts that fit my picky eyes.  He appeared somewhat excited and happy that a Plaquenil user came in and performing the test.  I think that’s a human nature and curiosity overcame.  I was happy with that.  In fact, it was much better than indifferent doctors.

To be continued.

B.

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Long, winding road – my lupus journey #8

The day of my first appointment with my THIRD rheumatologist.

The nurse was impressive.  She asked all the questions so I can explain almost everything.  Then not so long after, the doctor came in.

She looked very young for a board certified rheumatologist. And she looked polished which felt a bit awkward for this rural area.

After reviewing my chart and asked some questions, she did something I didn’t expect from a rheumatologist – she did a physical exam! None of the previous specialists listened to my breath or heart.  But she did.

Surprise didn’t end here.  She touched (really, physically) ALL joints in my limbs and touched all fibromyalgia tender points. Every time she touched the joint, she said, “this is swollen”, or “this is not”. For fibromyalgia points, she asked every time how I felt. And they DID hurt!

She was more straight forward than the rheumatologist #2. She told me that since my anti-dsDNA antibody was abnormally high while other auto-antibodies were slightly over the reference range, we should call it lupus.  She also told me that anti-dsDNA antibody was the best indicator for the status of the disease. So now I had an objective scale to monitor my disease. That was also a relief, because I always had to rely on my subjective pain scale.

She also suggested resuming Savella, which didn’t work and caused upset stomach in the past with rheumatologist #1.  But she prescribed Omeprazole along with it so I could try it again.

So now I took: Plaquenil, Savella, Omeprazole, tramadol, for my lupus.  They all helped, but they never eliminated the symptoms.

At the end of appointment, she told me to call anytime I had a problem.  Again, isn’t that rare?  Maybe it shouldn’t.  But this was the first time I heard this words from a specialist.  I finally felt being cared.  I wondered if the difference came from how she was trained…she was an osteopathic physician.  Both rheumatologist #1 and #2 were M.D.  This might explain that rheumatologist #3 diagnosee illness by touching and feeling, not just by looking at the test result.

When I had a big flare (rash on cheek, incredible and unexplainable fatigue, and flu-like body pain with emphasis on wrists and knees), I called her and she called in a short course of Prednisone.  Although I had to be bedbound for at least two days, prednisone somewhat helped.

At the next visit, it was obvious that my kidneys (the organ most often attacked by lupus) were healthy.  That was a relief.  But anti-dsDNA was still way high.  She increased the dose of Plaquenil to 600 mg, the maximum dose allowed.

But taking Plaquenil leads to more doctor’s appointment.

To be continued.

B.

 

 

 

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