mama whose curiosity knows no bounds

Posts tagged ‘flare-up’

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.

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.

 

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