mama whose curiosity knows no bounds

Posts tagged ‘Imuran’

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.

B.

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