mama whose curiosity knows no bounds

Posts tagged ‘anti-dsDNA’

Long, winding road – my lupus journey #10

With rheumatologist #3, communications generally went well.  But anti-dsDNA never went down and I still had lots of swollen joints, pain, and flare-ups.  And my call for short term prednisone increased.  So she rather wanted me on low-dose prednisone on a continuous basis.  We started at 15 mg.  It definitely helped because finally anti-dsDNA started to go down. She slowly decreased to 10 mg, but then anti-dsDNA stopped going down and frequency of flare-ups went up.  But she didn’t want to be on higher dose of prednisone because of the side effects (remember that ophthalmologist told me that I could take 20 mg for my comfort?).  Meanwhile, my “fibro”symptoms were improving.  I was skeptical of that diagnosis, but with Savella, the number of painful points among the tender points decreased.  I had to accept that Savella improved my fibromyalgia thus I indeed had it.

She added methotrexate (MTX) on my Rx list.  This is originally a chemotherapy drug and still being used mainly for leukemia at high dose.  This is basically an immuno-suppressant. But low dose methotrexate is the first line medication for rheumatoid arthritis and off-label use of methotrexate was pretty common for lupus.  It had its own risk like liver failure.  So she started at very low – 7.5 mg, and slowly increased by 2.5 mg (one tablet).  At first I didn’t feel much impact, although anti-dsDNA started to go down.

I felt the difference when the dose reached 15 mg.  My energy level was up, less pain in joint, less fatigue and less frequent flareups.  Except one problem.  I got insomnia.  Since 2006 when I had an extremely stressful event, I’ve been on Ambien at all time.  Ambien was heavens-sent.  I really needed sleep after a long day caring kids and everything else and sleep was hard to come by.  But that stopped working.  When I told about this problem, she suggested switching from MTX to Imuran, another immuno-suppressant, rather than increasing Ambien or exploring other sleep meds.

I was disheartened.  I finally got a combination of drugs that work on my lupus and now the doctor tells me to switch to something else.  I searched the Internet and found that Imuran had a black-box warning about its side effect — cancer! This freaked me out.  On top of that, my husband and S were visiting Japan at that time, and I was alone taking care of K and everything else.  I felt so alone and helpless.  I called an employer support program – my husband’s and my work were contracted with a company that had counselors on call 24/7.  The counselor referred me to a medical doctor on call to answer.  It’s like a free second opinion by phone.  The doctor’s response was great, but not necessarily reassuring.  Counselor saw the seriousness of my situation – I already told that I have lupus, fibro, and being suggested of Imuran, and I have a severely autistic son to raise.  This was apparently a red flag to her.  Although I didn’t ask for, she arranged a face-to-face counseling with a psychologist, making sure it is covered by health insurance because counseling could be long term.  This psychologist turned out to be helping me through the most difficult time in my life – my son’s transition to group home.

As for sleep med, I consulted yet another PCP and she prescribed Klonopin, which worked in the past, stopping Ambien.  So far, it is working and I’m slowly decreasing the dose hoping to be weaned off completely.

At least sleep meds issues were settled, so I continued on 15 mg MTX. My anti-dsDNA kept decreasing, to slightly above the normal level.  Prednisone was down to 7.5 mg. One time, anti-dsDNA went up a bit high.  The rheumatologist asked me, “what happened?”  She thought I had a stressful event triggering flare-up.  That particular time, I couldn’t connect to one particular event.  Otherwise, the things were stabilized, lupus-wise, though everything else was a mess. I will be writing about them when I’m ready.

Then spring of last year (2013), I received a letter.  The rheumatologist #3 was leaving.

To be continued.



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.





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