mama whose curiosity knows no bounds

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Evil drug

I’ve been quite not myself for a long time, about a year, and last six months had been quite rough.

Because of an evil drug.


I honestly don’t understand that a drug this addictive is on the market. That it is not giving you high doesn’t mean it’s not addictive.

At first, it gave a slight symptom relief. In my case that is joint pains. But this medication is also prescribed for depression and fibromyalgia. In hindsight, the relief a felt might have been a placebo effect.

Then the side effects kicked in. There are so many side effects listed on this medication, but in my case, it was brain fog. I was unable to think clearly and dropped a LOT of balls along the way.  I am sincerely sorry for those I caused problems.

After switching to Rheumatologist #5 (it was #4 who prescribed it), it seemed to be correct to get off of Cymbalta and deal with pain in other means. At least he suggested that it is most likely Cymbalta that cause the fog. I also had sweating, nausea, etc. 

So, he instructed me to reduce the dose from 60 mg daily to 30 mg daily.

It was awful, I had lots of pain episodes (it didn’t help to get my lumber disc injured, either), but believing that it will improve in time, I stuck with it. After 3 months, the doctor instructed me to take 30 mg EVERY OTHER DAY.

This was a worst thing a doctor could do to patients.  Believe me.

After a few days, I started to have a strange sensation all over my body.  It was like an infinite number of tiny insects with needle-sharp legs were crawling all over my body. I also had a sudden electrocution like sensation on my extremity and head. I later learned that it was “brain zaps”, a common withdrawal symptoms. I have had crawling sensations even when I took 30 mg every day, but not to that extent. Also, not surprisingly, my mood made a plunge. I am not sure because Cymbalta helped with depression I didn’t have before, or it was a part of withdrawal package.

So I rolled back. Not only rolled back, I was on 60 mg. Then the sweating began. I woke up drenched in sweat, with throbbing headache and vomiting. I suddenly started to drip sweat in the middle of something. I was embarrassed. I thought I might have other health issues like diabetes, but my blood sugar is mostly normal. 

Then at the really degrading appointment at the rheumy #5, I was told that was Cymbalta. I told him of the withdrawal symptoms (I wrote to him through patient portal but he never responded). His response was that I will have bad things either way: quit Cymbalta or not. It was as though “Damned if you do, Damned if you don’t”, though he didn’t use swear words. His left foot was out the door.

Then I started studying about Cymbalta withdrawal. I am usually not for anecdotes. But this time it was backed up in some FDA documents. So enough reason to believe what I had was either side effects or withdrawal symptoms. 

What surprised me, though, was that no one really knows, including the manufacturer, how to quit Cymbalta. So I have to rely on anecdotal patient support group. What I learned was: I really have to go slow, and never skip dose a single day.

My generic version of 60 mg Cymbalta happened to be made of 12 pellets. According to information found on the Internet, there are 29 manufacturers of Duloxetine and some have uniform microbeads (like the original Cymbalta) and others have irregular microbeads mixed with filler beads, yet like mine, made of “5 mg pellets” which according to patient support group is so irregular that actual potency is unknown.  How could a drug manufacturer sell a capsule made of 12 pellets of unknown dose? How inconsistent it is? That’s still unknown. Many use compounding pharmacy to have a special dose. Many decrease dose by 10%, some other taper by 2.5% every week. Still suffer withdrawal.

For now, I assumed that the “5 mg pellet” is actually 5 mg, I decided to take out one pellet. Meanwhile, I am in frantic search of a GOOD rheumatologist. I, like many other lupus patients, they don’t come easily. So far, I have a little bit of crawling sensation and bad neck pain. But I consider it tolerable, compared with what I had.

So my Cymbalta withdrawal journey will continue. But I have to express that my anger with the fact that such a drug is still on the market, and in such variable formats. I understand that narcotics have caused a lot of problems. Yet I never had a problem stopping Vicodin or even Percocet I took for a few days. No withdrawal symptoms. And that can be taken as needed basis. Cymbalta is not. Yes, Cymbalta has no abuse potentials. Hey, who wants to get sweating and crawling sensations? Yet, I seriously think something is seriously wrong with handling of pain medication.  Especially handing out a medication this bad.

My sincere message: don’t. Even. Take. It.



another flare! or what?

I’m in the another bout of lupus flare up. Or may not be. And I’m afraid of the latter possibility because it means something else.

I had the tell-tale sign of flare-up – like fatigue to the core, unable to get up, and the annoying morning stiffness I hadn’t had since I switched from methotrexate to CellCept. I also had the mild cold symptoms, which is the most frequent trigger of any flare up. If I had just that, I thought it is just another flare up.

But this time, it is weird. I had a straining pain on the outside of lower legs, and fore arms. As though I strained by some labors. But I was down with fatigue and no way I can balance the pain to both arm and leg at the same time. What was clear is it’s from muscle. When I took flexeril I was prescribed for occasional back pain, the pain disappeared right away! And fortunately, it didn’t come back as bad when the medicine wore off. I certainly don’t want to take flexeril for long, which knocks me out! It was yesterday morning.

Then this morning. I woke up with horrible fatigue, like I was tied down to the mattress by a bunch of cobweb. But I got off of the bed, and realized, that I can’t squat! I can still bend my knees in the air or on bed though it hurts, but I can’t, simply can’t, squat down! I called my husband to feed the cats because I was unable to pick up the bowls. I felt like I was collapsing, not able to put any weight on my knees, although I was walking! It was scary.

What is this, old age? Different kind of arthritis? Or a bad version of flare up?  I rested the whole morning and I can now do light chores, though I don’t dare to squat, yet.

Maybe I need to contact my rheumy to ask what this is. But for now, rest is in order.


CellCept – not yet

Last December, I saw a new rheumatologist. He is a professor of very prestigious university and usually we don’t get to see him. But thankfully, I had another option available through my employer. My employer subscribes to Personal Medical Guidance doctors service. This service let’s the employee and their family see or phone a doctor and help understand the situation, or if needs arise, secure referral for the second opinion. The doctor I consulted clearly saw the need for a second opinion or switch the rheumatologist, as I continue to suffer. It’s incredible to see such a prestigious doctor in 3 weeks wait. I know seeing ANY specialists take at least a month, if not more. Let alone the famous one! I’m very happy that my employer has this service!

Of course seeing the well-known doctor has it’s drawbacks. First, the wait time was awful. I waited for about an hour to see a resident physician, then wait another 40 minutes to see the doctor. And even though I need to see him in a month, there was no opening. So he found a sole opening slot in the RESIDENT’s schedule, in a different campus where he doesn’t see patients directly and only teaches. This means that I need to drive an additional hour for the next appointment, but I think it’s worth it.

For the first time, I felt that all my concerns are legitimized. He didn’t minimize, or make a comment like “it’s all stress!” So I felt very validated. AND HE TOUCHED ALL MY JOINTS AND CHECKED THE MOBILITY! My 3rd rheumatologist touchd all my joints, but even she didn’t check my mobility.

Anyway, he decided that my methotrexate is not working – at least not in a way it should. I still have flare up about once a month and background joint pain is always there. I was taking 15 mg/week of methotrexate, and when it was raised to 20 mg, I felt much better but my liver wasn’t happy and showed in the blood test. So the new rheumatologist prescribed CellCept – an immunosuppressant that is usually used in post-transplant patients to prevent organ rejection. He told me that it has side effects like nausea so that the dose needs be slowly increased. I started at 1000 mg/day, a week later, 1500 mg/ day and then a week later, 2000 mg/day, the supposed working dosage. 

I did have nausea and it somehow kicks in 3 days after starting the certain dose. As I started on Wednesday, I suffered nausea for the last three weekends. But it wasn’t too bad. What was worse came from stopping methotrexate. By the second week, I had all the joint pains coming back, and this time, unlike any flare-ups, the pain doesn’t go away. Similarly, I had rather rough fatigue and inability to focus. But my inability to focus may be from another reason, which I plan to write in a separate blog.

Just to be functional, I need Vicodin now. I hate to take it, so I limit to 2 tablets a day maximum and if not needed, I do my best to rest. Therefore, I need to use it wisely. I usually reserve one for the evening as pain when I try to sleep is really awful. During the day, I try to distract myself by doing lying meditation or watching videos. Not having a consistent routing doesn’t help, either. Thanks to polar vortex part 2, the school barely opened for the new year. Although S is mature enough to leave her alone in the home, I still need to check in at least every few hours. And I don’t want to drive on icy road while on vicodin, although the medication doesn’t make me drowsy or high at all. This is just a safety precaution. Now I can type only because I’m on Vicodin. Otherwise, I can’t really do anything.

Since now Cellcept reached to the full dose, I expect the effect to kick in soon. But immuno suppressant seems to take days, if not weeks or months, to kick in, based on my experience with methotrexate and Plaquenil.  I hope it’s not the case for CellCept. I can’t wait to see the effect. It’s not an easy medication as it needs be taken in an empty stomach and having two more empty stomach medications (synthroid and Fosamax) is not very helpful. Now I take it with synthroid and I’m not sure if that is the problem or not. Pharmacist didn’t have the definitive answers, either. I do plan to ask the rheumatologist at the next appointment about 10 days away, though.  I might change the way I take if it doesn’t kick in soon. Ugh.

Christmas flare

This Christmas break turns out to be mentally not so stressing, but physically very tough one.  Here’s the rant.

The week began awesome – I went to Cleveland to see my new rheumatologist, one of the best in the country. And he was pretty busy but aggressive in treatment. He made me stop taking methotrexate and switch to Cellcept. It hasn’t kicked in yet, but I am very hopeful about this switch. Another awesome thing that happened was he took my complaints of focus issue (I can’t sustain attention as I need to) seriously. To rule out CNS lupus, he ordered MRI. All other doctor dismissed this as “it’s just a menopause”. And he showed a proper respect to those in biomedical research fields. As a result, he treated me like a pro, not a whiner.  After all, I do research on type I diabetes, an autoimmune disease. And I have extensive background in DNA metabolism. Better yet, the MRI was done the same day. I fully expect that I had to go back there – 3.5 hour drive minimum, usually much longer in winter. But surprise! I would get it done all in one day! 

The problem is he virtually has no opening.  I was able to see him using an alternate route – I used a personal medical advocate that my employer provides as a part of benefit package. Without that advocate, I would never be able to see that famous doctor. And even the last appointment was with the resident fellow physician. So the doctor found opening in his time attending the same resident fellow, so he can see me again. So this is not an ideal start but I at least got to see the best rheumatologist in the country and he is treating me aggressively. He even suggested starting Benlysta, a biologic IV infusion medicine. Problem is, it is super expensive – $30k per year. I haven’t checked my prescription benefit, but the regular copay rule doesn’t apply to the biologics, that’s all I know. I have to investigate once the new year starts.

I was so excited that I didn’t feel hungry at all or tired at all. Bad sign. Because I will get the doubled to even tripled version of fatigue afterward. The next day, I had a bad nasal congestion and some cough. That sounded like a cold.  Another bad sign. Because infection is the most common trigger of my flare-up, followed by overexertion.

Still on Wednesday, Christmas Eve, my family had a cleaning day. My house was so cluttered and dirty beyond belief. I worked 4 hours nonstop, yet we could finish only two rooms.  I don’t want to count how many rooms I need to work…

Then Christmas Day came. Well, S was happy with the present – creme brûlée set with blow torch and ramekins. And potato chips. And she started baking Japanese style Christmas cake. On the other hand, I was miserable. I was fatigued as hell and every joint of my body hurt. It was clearly the flare up.  But because I started Cellcept, I was determined not to take prednisone this time.

The flare continued the following day. Except for a brief meeting to plan a fundraiser, I stayed in bed all day. I could hardly walk.

Now, Saturday morning, I feel a bit better, but not completely out of the wood yet. But today, I will see my son. No matter what. I just can’t live without seeing him.

Cellcept is supposed to be stronger than methotrexate, but it won’t reach full dose for another 10 days. Fortunately so far, I don’t have any serious side effect yet. I should thank that this med transition overlapped the winter break, I guess. You know, it’s better to look for a positive and that is mine for this flare.


Sabbath? no not really

For the last 3 months or so, I defined Sunday as my “rest day” as though it is a Sabbath. But in my case, it is merely “mental and physical health day”.

On Sunday I do nothing I have to do, I do something that I want to do –like blogging, or when I feel good enough, sewing. Most of the time, I spend the day in bed, just resting, doing nothing.

Now K is in group home, most Saturday I visit him, unless flare-up or other stuff interferes. Even if my husband drives for most of the time, and in cover myself with UPF50+ shawl, still 4 hours or ride is stressful to my body. That made it start my rest day habit. It allows me to recharge myself so I can go forward with the week ahead of me.

During weekdays I now have to wake up an hour earlier than before, thanks to S going to middle school that starts an hour early. I think this triggered the development of this habit.

Of course it needs cooperation of my family, and luckily, I have. I don’t cook – I often spend all day eating only cereals and my husband and my daughter enjoys meat dish – like bacon and spinach. And now S is old enough, I can ask her to prepare Monday’s lunch – or she will have “hot lunch” at the school – and she always opts for preparing one, even if that means that the lunch consists of three cookies, a cheese stick, and a cupful of fruit. Today she prepared cheese pasta with some vegetables and apparently ready to go.

I don’t do dishes – it’s always my husband’s job. I don’t do laundry, even if that means I have to do two loads on Monday.

This turns out to be quite a good arrangement.  Interestingly, no matter how much I sleep during Sunday, I can sleep through the night. So I just think I’m catching up, even though I usually sleep seven hours every day. I sometimes wish if I could do with less sleep but that was not the case. So I try to make the most out. 

I think many people with chronic illness can make use of this rest day.  It also helped me to say “no” on everything that happens on Sunday. 

When K was at home, Sunday used to be the toughest day of the week. He woke me up at around 8, asking for food. Then ask me to stay with everything he does, even though it means stimming and immerse himself in his world. Because I couldn’t take him to public place out of fear of meltdown, he demanded to go out for a ride. So I drove my neighbor, 30 minutes at a time, sometimes stopping by a gas station to buy his favorite junk food so he learns to stand in line and wait until I pay for the item before he opens the bag. We usually repeated it for 3-4 times a day. What a waste of gasoline! Then whenever he appears to enjoy himself, I sneaked out to do a week’s worth of grocery shopping. Prepare dinner and next days lunch, give K his sleep med, and had harder time making him fall asleep because I was too lazy to wake up as the same schedule.

As I write this, I wondered how I managed THAT.  Probably the sheer force of will/situation.  I realize how much I stressed myself. 

I’m finally learning how to rest myself. And I’m hoping that this will lead to better self for my family. But only they know if they are happier or not with me in bed all day.


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.


simple broccoli slaw

Most cole slaw is made of milky dressing that is watery. I don’t hate it, but I like my version better. Much better.

I buy a bag of “broccoli slaw” (mix of julienned broccoli, carrots, plus red cabbage and/or cauliflower). I transfer it to a bowl, wrap tightly and slit a hole with a knife and microwave. For one bag, I microwave for 4-5 minutes. It is harder than you might imagine.

After all the extra water is drained, I add equal amounts of two ingredients: 

  • roasted sesame seed oil 
  • Aji-pon“-soy sauce plus citrus vinegar. I don’t bother making it from scratch. It’s available at Asian food section of most supermarket or Asian grocery store. Even if “aji-pon” is not there, there usually is “pon-zu” just a bottle of citrus-vinegar mix. You can mix 1:1 with soy sauce.

For a bag of this broccoli, about 12 oz, I think I used about 1.5 tbsp each. But honestly I didn’t measure. I drizzled each and when I felt right, I stopped and tossed.


That’s it. This is as tasty as any namul, and as easy as bean sprout namul. This goes well in bento box. The only trick is to drain water really well before adding aji pon and oil.

I guarantee it. It’s better than regular slaw dressing!


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