mama whose curiosity knows no bounds

Posts tagged ‘lupus’

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.

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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.

B.

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.

B.

About the spoon theory

Many with lupus and some in autism community are familiar with Spoon Theory, coined by Christine Miserandino.  The original blog post, “But you don’t look sick” is here. According to Wikipedia, the spoon theory is defined as:

The spoon theory is a model used by some disabled people and people with chronic illness to describe their everyday living experience when their disability or illness results in a reduced amount of energy available for productive tasks. Spoons are an intangible unit of measurement used to track how much energy a person has throughout a given day. Each activity “costs” a certain number of spoons, which might not be recharged until the next day. A person who runs out of spoons loses the ability to do anything other than rest. One of the tenets of the spoon theory is that disabled or ill people must plan their activities to ensure that every day is manageable, while healthy people have a “never-ending supply of spoons” and thus never need to worry about running out. Because healthy people do not feel the impact of spending spoons, they may not realize that chronically ill or disabled people’s considerations include mundane tasks such as bathing and getting dressed. Spoons are widely discussed within the autoimmune, disabled and other communities, but the concept of spoons is otherwise considered a neologism.

I feel it a lot. When I have a lot to do, I try to save my spoons by resting between activities as much as possible. Relaxation and meditation sometimes gives one extra spoon! Because worrying and stressing out is an activity that consumes several spoons, I need to make a conscious effort not to stress out.

But sometimes that’s not enough. I feel like I collapse on the spot, but there are things to do. What I do metaphorically, is “borrowing it from future”. By sheer willpower, I borrow a spoon or two to get through the day, knowing that I have to pay back by bedrest the next day. I think about what I sacrifice by having much fewer spoons the next day. I often find I sacrifice the most important things – my family.

I wish I had a lot more spoons. But I don’t. I wish I could save spoons for my family. But I can’t. Without being advocate, probably I’d have much fewer spoons to begins with, or I might have run out of spoons already. This is my lifeline. I am sometimes overwhelmed by these conflicts and internal inconsistencies. I don’t know how.

I have a lot of learning how to save my spoons. I’m very poor at it.

B.

Flare got me, sis!

I’m under another lupus flare attack. I was really tired yesterday and I thought it was all because of the busy week. It was a beginning of flare.

It almost always begins in my case a stressful event or minor infection. This time I think is the latter. My daughter, who is really heathy child was sneezing and sniffling a few days ago. We thought it might be just an allergy. But I had a mild sore throat at the same time. Next day, it seemed to clear up. On Facebook I see a lot of posts about “back-to-school illness”. Well, two days of sniffling was an easy one, after all.” Again, I forgot what that would do to me. It seems like I can keep infection away really well by my super strong (innate) immune system, yet that will fire up my entire immune system, especially autoimmune one, to overdrive. I usually see the symptoms of flare after two days after infection symptoms disappeared. 

Now I’m fatigued to the bone, my entire body hurts, especially elbows, hand, and mid back. My extremities are swollen. I thank iPad and this BlogPad Pro App. I can’t move fingers independently. So I move each hand with either index finger or middle finger to touch. I can’t sit straight. so I lie down on bed. I will remain this way for a day or two. Then I usually go back to normal.

I’m glad I have an understanding family. It wasn’t like this until I got the definitive diagnosis of lupus. And I’m aware that many my fellow “lupies” suffer by suspicion placed by the loved one that “she is faking it”. I was able to ask my husband to drive my daughter to gymnastics practice. Although asking everything i do is still hard – after all he is tired as well as a week worth of hard work!

Between typing, I raise my hands up high to reduce some of the swelling. My pillow is not high enough to keep my legs up. I’ve got to sew something. But after my body is mended.

I wonder if there is anything I could do to keep my immune system low at the stage of infection. I already take Plaquenil, Methotrexate and very low dose prednisone. Upping the prednisone in advance must help though it has a risk of prolonging the infection. Rheumatologist usually don’t allow such “preventative use” of prednisone and that makes sense. I just wonder…in time like this…there are so many supplements that claim to reduce inflammation. I take fish oil, turmeric, and eat lot of ginger. None of them is helping me.  I just, just wonder, if any anti inflammatory can prevent…since I can tell it’s coming.  It’s as though I can see the air strikes coming but no where to hide or run.

Of course the most frustrating is I can’t go see K. I wanted to bring his Kakinotane (his favorite spicy crackers) my brother shipped me from Japan. A positive is that my husband put the visit on his calendar next Saturday, so I’m guaranteed the visit a week from now.

Stay positive. Lupies.

B.

 

Long, winding road – my lupus journey #11

It was a shock that my rheumatologist was leaving.  We established a good working relationship and everything went great. The letter also said that the health system would look for another rheumatologist and as soon as they found, I could see her/him.

But I lost faith somehow.  It is impossible to have a long-term working relationship with a specialist like a rheumatologist.  My area is too rural for any specialists (unless they are local) to stay put.  They leave for more urban, richer communities.

I’m a firm believer in long-term patient-doctor relationship.  For example, I stick with the same psychiatrist for my son for 7 years until he moved to the group home.  It took about a year to build trust to each other.  Maybe rheumatology is not as complicated as psychiatry, but I don’t want to see a new rheumatologist every year or two.

I decided to seek a rheumatologist in a large city, about 1.5-2 hour drive from my house.  I searched very hard on the web, reading reviews about the doctors.  And I found a very well reviewed female rheumatologist in a specialty clinic.  My thinking was that if it was a specialty clinic in such a large city, the chance of her leaving office would be low.  I called the clinic and made an appointment.

The first appointment was a dissapointment. Again, she didn’t examine me physically.  Just listened to my history and medication.  I brought the blood test result at the previous clinic.  She even didn’t look at it.  She appeared indifferent and somewhat cold. But she changed my meds. First she increased methotrexate to 20 mg and then tapered down prednisone to 2.5 mg every other day.  This change worked.  Also, she added etodolac (Lodine) to curb the pain.  I felt more energy despite decreasing prednisone.  After all, I might have made a right decision to choose her despite her cold attitude.  Maybe that’s an urban thing.  I also thought that she mostly saw RA patients and their symptoms might be a lot more severe than mine.  With previous rheumatologist, I saw her at least every three months but the new clinic, lupus patients are seen every four months.  And previously I usually had a blood test 10 days before the appointment so that the doctor knew the most recent data, but the new clinic, blood test is done at the visit, so at the time of appointment, the doctor has to work with 4 month old data and my oral explanation.  Still, it seemed working.

The second appointment, I was happily reported that higher dose of methotrexate, reduced dose of prednisone, and etodolac are all working.  During that time, my right elbow pain was getting serious and I asked what is wrong. She (finally) touched my elbow and the verdict was “tennis elbow”.  I was like, “really???” but she suggested to buy tennis elbow brace and gave me a sheet of exercises so I followed.  Brace helped me to do the work, but didn’t improve the problem.  For exercise, the pain got worse.  So I stopped in about three weeks.  I still wear brace as needed.

A day later, I received a phone call. “Your liver function is not normal.  Rollback methotrexate to 15 mg.” Sigh….I thought I finally got the right combination…I didn’t have any liver symptoms….but I needed to cut down.  The effect was obvious.  But I was determined not to increase prednisone, because there was a DEFINITE improvement in my sleep quality.  Before tapering down prednisone, it was normal to wake up at least twice for bathroom.  No longer.  Maybe once at most.  Water retention in legs must have decreased tremendously.  I don’t want to go back to the previous style.

To be continued.

B.

 

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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