mama whose curiosity knows no bounds

Posts tagged ‘prednisone’

lupus flare and prednisone and self-hate

For the last few days I’ve been really sick. I think I did my best to calm my angry immune system down and recover. Basically, I rested whenever I can.

For whatever reasons, I’ve been having more flare-ups than , say, a few months ago. Maybe my synthroid is not enough to manage my hypothyroid from thyroidectomy. Maybe I’m too busy doing stuff. Maybe because since S started middle school, it’s been difficult to go to walk track to exercise. Maybe I’m too involved with emotional discussion in Facebook. Just maybe.

Yesterday it was overwhelmingly hard so I had no choice but stay in bed all day. I had an event I must attend in the evening so I need to recover even for a little bit for that. Thanks to the bed rest and Vicodin, which I take very sparingly, I was able to function at the event. One stuff on the list down.

Then this morning, pain and fatigue is back again. Also today is my Fosamax day. I wake up before 6 am and take Fosamax then stay upright for 30 minutes. Usually I lean on couch and pretend to be awake, but I even couldn’t do that. Nausea and pounding headache was added to the mix. Only after that Fosamax time, I could take my morning medicine, which include tramadol and etodolac to control pain and inflammation.

Today simply that was not enough. Last week I was sick so I canceled my visit to my son, K. So I MUST GO SEE HIM NO MATTER WHAT. Then I gave in the temptation—-I took some extra prednisone, which guarantees to bring back energy and reduces my joint pain. My rheumatologist prescribes some extra prednisone for that purpose.

Now the self-hatred kicks in. I feel like a drug addict trying to recover and relapsed. Since I already have osteoporosis, I’ve been making a conscious effort to minimize prednisone. And trying to replace it with much healthier option — rest. I tend to do more than I can handle, so saying no and setting aside some time to rest both emotionally and physically was something I  worked hard to achieve. 

Now I’m letting my schedule taking over my rest and taking that magic pill. At the expense of my bones and probably pancreas. Well, of course my son is worth giving up some bone health and I can work to catch up with exercise. Still, my effort for the last few days to rest was replaced by the magic pill. I feel defeated, as my energy level goes up. 

All I can do now is get off of it very quickly, though it will take at least a week.



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 #6

I saw the rheumatologist, who was in the same building a few weeks later.  She wasn’t nice to me.  Just by looking, she told me, “you have osteoarthritis here and here (pointing knee and elbow and fingers).  Then she touched a few places and immediately told me “you have fibromyalgia”.  That’s new.  I have heard of it, but I never thought of it.  She suggested to take a Rx NSAID to relieve pain. And ordered a bunch of blood tests.

At the next appointment, she reviewed the test results and told me, “well, a thing for lupus is a bit high, but not high enough to call it lupus.  Nothing extraordinary but Graves’ disease is still there.”  According to her, TSI (Graves’ disease’s antibody) causes double vision and fibromyalgia causes extreme fatigue and pain.  I told her it’s my joints that hurts, but she readily dismissed as that’s muscle pain.  I was simply incapable of telling them apart.  So she suggested Savella, an SNRI that is approved for fibromyalgia pain.

However, what annoyed me really was not just her dismissive attitude. During each appointment, she told me, “you’re in good shape.  So you may have fibromyalgia.” “you’re in such a good shape”, etc.  She said “you’re in a good shape” at least 10 times every appointment. I was not in a good shape.  I was borderline overweight. But I could tell that her BMI was greater than mine.  I felt as though she was so depressed by her weight issue and she throws at “a good shape” attack to any female patients less overweight than she was.

But that was as good as it gets as she was the nearest rheumatologist and about 1 hour drive.  To see everyone else, I had to drive at least two hours.  There was no one locally.  So I kept taking Savella, but I didn’t have the trust in her so I didn’t see much impact.  I still felt extreme fatigue and joint pain was not any better.

Meanwhile, as recommended by the second neurologist, I saw an ophthalmologist.  Apparently she had no idea but confirmed double vision and believed in the neurologist’s explanation.  So she prescribed me prednisone, 20 mg a day.


I was like a re-born.  Every bit of weight that dragged me down was lifted.  I saw single! I had so much energy without joint pain!!! I even did some gardening, making my hubby really surprised.

But my PCP didn’t like that idea.  Despite my insisting that something inflammatory must be going on because prednisone worked so great, his response was, “With prednisone, anyone feels good. You should stop prednisone because of side effects.  you should try more alternative approach like wax bath for joint pain”  He also prescribed Tramadol, warning that I should use it sparingly or I will be addicted.  Tramadol WAS helpful.  But nothing was like prednisone.

On the other hand, my ophthalmologist were totally fine with it.  For her, 20 mg prednisone was “very low” (I learned later it was NOT), and this was done for my comfort.

I was utterly confused.  I didn’t know if I should keep taking prednisone or not.  I had no one to consult.  Eventually, I chose NOT to take prednisone and keep taking tramadol.  I’m not sure which was more disappointed, my husband or myself. I stopped Savella because of stomach side effects and mistrust on the rheumatologist.

Then I heard a good news.  The PCP told me that the health system I use hired a rheumatologist! I immediately asked for referral.  Now I no longer had to listen to her “you’re in good shape” attacks!  This was early 2010.  Four year had passed.

To be continued.


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