Saturday, March 5, 2011

Rhumey Update

Had another visit with Rhumey today.  Here are some of the updates:

My weight has been steadily going up with each visit, so Rhumey asked me what my normal weight was before I got sick.  I'm a couple pounds below my normal weight, so I'll have to start watching it more so I don't go over.  Part of the weight gain is probably a side-effect of the prednisone, which I want to get off of soon anyway.

On my last visit, Rhumey had dropped my prednisone from 7.5 mg to 5 mg.  Since then I have been feeling more tired and been experiencing headaches.  Despite that, our goal is still to get me off the prednisone.  Dr.  K dropped my dosage again today and was nice enough to keep my pill swallowing issue in mind.  The pills I am currently taking are 5 mg tablets that can be split in half.  He said that once patients get down to 5 mg, they usually taper them off by lowering it by 1 mg at a time.  If I were to do this, it would mean I would need to swallow 4 1-mg pills.  We could try dropping it to 2.5 mg and I would just need to take 1/2 a pill, but because it is a 50% drop in dosage, I'd likely start to feel the effects of the lupus coming back.  I told him I don't mind swallowing the prednisone pills since they are so small, so we opted to go for tapering the prednisone slowly.  The plan is to lower the dosage by 1 mg each month assuming my symptoms and blood tests are relatively in check.

Because my symptoms seem to be coming back, Rhumey thinks I may have to start another medication in addition to the plaquenil so that I can get off the prednisone.  Although I may be able to get to a low 1-2 mg maintenance level of prednisone, the long-term effects of taking even a small amount for 40 or so more years could be damaging.  He said that if I were a 70-old in the same position, he would probably opt to keep me on the prednisone since the risk of staying on a low dose for a shorter amount of time would be lower than introducing a new medication.

The new medication I will probably start is azathioprine (brand name: Imuran).  It is an immunosuppressant drug to help reduce inflammation and slows damage to the organs caused by inflammation.  Because it suppresses my immune system, I will be more susceptible to infections.  Other side-effects of the drug are lowered blood counts, stomach pain (Rhumey says it can be pretty severe), and nausea.  There is also a chance for excessive drug toxicity if I can't metabolize the medication properly.  There is a blood test (thiopurine methyltransferase - TPMT) we can do prior to starting the medication to see if it will cause a complication.  We'll test for this on my next blood test and see how I am doing in a few weeks to see if I'll need to start taking azathioprine.  I'm really hoping that I don't!

I also asked Rhumey about Sjogren's Syndrome, which many lupies also suffer from.  The primary symptoms are dry eyes, dry mouth, and dry skin...all symptoms that I have.  He said that the symptoms often overlap with lupus.  I didn't test positive for the specific antibody, but he said that it wouldn't make much of a difference because it wouldn't change my treatment.  I am seeing my ophthalmologist on Tuesday, so I'll mention the dry eyes to her and see what she recommends.

He asked me if my Raynaud's and headaches were bad enough that I wanted to start treatment for it, but they are pretty mild, so I opted not to start another medication.  I'll need to monitor these symptoms, though, to make sure they don't get worse.

Other than that, Dr. K said I am doing well.  We scheduled my next appointment in 2-1/2 weeks and I'll need to take my blood test a couple days prior to that (no blood tests today!).  If the results from that come back good, we can start spacing out my appointments further apart.  'Til then, that's the Rhumey update for now!

- a little lupie -

BMP Test #5 Carbon Dioxide (CO2)

As part of our effort to decode the BMP (Basic Metabolic Profile), we'll take a closer look at the fifth test -- Carbon Dioxide (CO2).

Electrolytes keep your body's fluids in balance. They also help keep your body working normally, including your heart rhythm, muscle contraction, and brain function.

A carbon dioxide test measures the total amount of the three forms of carbon dioxide (bicarbonate, carbonic acid, and dissolved carbon dioxide) in your blood. This test is also called a total carbon dioxide or TCO2 test.

Carbon dioxide (CO2) is a gaseous waste product made from metabolism. The blood carries carbon dioxide to your lungs, where it is exhaled. More than 90% of carbon dioxide in your blood exists in the form of bicarbonate (HCO3). The remainder of the carbon dioxide is either dissolved carbon dioxide gas (CO2) or carbonic acid (H2CO3).

Your kidneys and lungs balance the levels of carbon dioxide, bicarbonate, and carbonic acid in the blood.

A carbon dioxide test is often done as part of a group of laboratory blood tests (chemistry screen) to help find the cause of many kinds of symptoms. It is often done if you are having breathing problems.


- a little lupie -

Friday, March 4, 2011

No, Really...Why?

Despite my kumbaya post on why I got lupus, I'm sure a lot of people are still wondering why and how, in the medical/scientific sense, someone gets lupus.  Is there something I did that put me at higher risk?  Is there something I didn't do that could have prevented it?

The short answer is that experts don't know.

To go into more detail, I'll address some common questions:

Is lupus contagious?
Lupus is not contagious.  You can't "catch" it from someone who has it.

Is lupus hereditary?
This is a complex question.  While lupus itself is not passed down, experts believe that there is some kind of genetic connection.  Certain ethnic groups (people of African, Asian, Hispanic/Latino, Native American, Native Hawaiian, or Pacific Island descent) have a greater risk of developing lupus, which may be related to genes they have in common.  Some experts think that it specifically has to do with a gene on the X-chromosome, which would explain why it primarily occurs in women.

Doctors believe that you may inherit a predisposition to lupus, but not lupus itself. People with this predisposition to lupus may develop the disease when it is triggered by environmental factors.

What kind of environmental factors could trigger lupus?
The onset of lupus can be triggered by a number of environmental factors.  These factors could also trigger a flare in a person with lupus.  Some examples include:

  • Ultraviolet light from the sun or fluorescent light bulbs
  • Medication/drugs/antibiotics
  • An infection/illness
  • Stress - emotional or physical


What role do hormones play with lupus?
Women have noted that symptoms often get worse after ovulation and get better at the beginning of the menstrual period.  This supports the theory that estrogen affects the severity of lupus, however it does not mean that estrogen causes lupus.  There have been studies that show a correlation between birth control pills and lupus, but there have been conflicting reports.

Why is so little known about the cause of lupus?
While researchers don't know exactly what causes lupus, they are making headway in understanding the disease more. While scientifically still a “black box,” better diagnostic techniques and treatment methods has led to more effective management of the disease and its complications.

Just 20 years ago, only 40 percent of people with lupus were expected to live more than 3 years following a diagnosis. Now, with earlier diagnosis, the latest therapies, and careful monitoring, most people with lupus can look forward to a normal lifespan.

♥ ♥ ♥ ♥ ♥

I know that still doesn't answer the question of why people get lupus, but it is a start. Hopefully researchers will continue to make headway and we will one day understand what causes lupus.  Maybe, just maybe, they will even find a cure!  *crosses fingers*

- a little lupie -

Why Me?!

I know a lot of people with chronic disease go through a grieving period and wonder, "Why me?!"  A lot of us go through life and take our health for granted, scoffing at 1-in-1,000,000 statistics and think it will never happen to us....then, *boom* -- you get the diagnosis that changes your life.  (Really, why don't I have this kind of luck when it comes to winning the lottery?)

I like to think of myself as a positive person.  I believe that "things happen for a reason."  I believe that "if He brought me to it, He'll bring me through it."  I believe that "that which does not kill me makes me stronger."  I believe that "every cloud has a silver lining" and that "when it gets dark enough, the stars come out."  I know it sounds cheesy and very cliche, but I guess that's me...

That's not to say that there aren't days that I lay here feeling sorry for myself and wish that it would all go away.  Yes, there are days when I curse those "normal" people for not appreciating the little things that get them through the day -- being able to open a door without experiencing pain, not having to plan your day around when you need to take your medication, and waking up every morning without worrying about a potential flare.

So I guess the question still remains -- why me?  I don't think there will ever be a definitive answer.  I like to think that I was "chosen" because I am strong enough to get through it, and that through my struggles, I will become a better person.

Really, I guess I should wonder "why not me?"  I'm sure everyone thinks "Why Me?!" at some point in their lives.  It may not be because of a chronic illness, but everyone has issues and struggles that they need to deal with.  It is our way of learning, our way of growing.  It's not important to understand the why, but the how.  How will you deal with it when your "Why Me?!" moment comes?

- a little lupie -

BMP Test #4 - Potassium (K)

As part of our effort to decode the BMP (Basic Metabolic Profile), we'll take a closer look at the fourth test -- Potassium (K).

Electrolytes keep your body's fluids in balance. They also help keep your body working normally, including your heart rhythm, muscle contraction, and brain function.

A potassium test checks how much potassium is in the blood. Potassium is both an electrolyte and a mineral. It helps keep the water (the amount of fluid inside and outside the body's cells) and electrolyte balance of the body. Potassium is also important in how nerves and muscles work.

Potassium levels often change with sodium levels. When sodium levels go up, potassium levels go down, and when sodium levels go down, potassium levels go up. Potassium levels are also affected by a hormone called aldosterone, which is made by the adrenal glands.

Potassium levels can be affected by how the kidneys are working, the blood pH, the amount of potassium you eat, the hormone levels in your body, severe vomiting, and taking certain medicines, including potassium supplements. Certain cancer treatments that destroy cancer cells can also make potassium levels high.

Many foods are rich in potassium, including scallops, potatoes, figs, bananas, prune juice, orange juice, and squash. A balanced diet has enough potassium for the body's needs. But potassium is passed in the urine even if the level in the blood is low so the level of potassium in the body can get lower.

A potassium level that is too high or too low can be serious. Abnormal potassium levels may cause symptoms such as muscle cramps or weakness, nausea, diarrhea, frequent urination, dehydration, low blood pressure, confusion, irritability, paralysis, and changes in heart rhythm.

A blood test to check potassium is done to:

- Check levels in people being treated with medicines such as diuretics and for people having kidney dialysis.
- Check to see whether treatment for too low or too high potassium levels is working.
- Check people with high blood pressure who may have a problem with their kidneys or adrenal glands.
- Check the effects of extra nutrition (total parenteral nutrition [TPN]) on potassium levels.
- Check to see whether certain cancer treatments are causing too many cells to be destroyed (cell lysis). Cell lysis syndrome causes very high levels of some electrolytes, including potassium.


- a little lupie -

Thursday, March 3, 2011

Lupus Hawaii?

I've been trying to find out if there are any lupus groups here in Hawaii. I've found information on past events like a lupus walk and a wine festival fundraiser, but nothing current. Lupus Hawaii organized many of these events, but the website seems to have been taken down, and no new events have been planned.  I tried calling the office and got a voicemail but didn't get to talk to anyone. Anyone know if the organization is still active???

- a little lupie -

BMP Test #3 - Sodium (Na)

As part of our effort to decode the BMP (Basic Metabolic Profile), we'll take a closer look at the third test -- Sodium (Na).

Electrolytes keep your body's fluids in balance. They also help keep your body working normally, including your heart rhythm, muscle contraction, and brain function.

A sodium test checks how much sodium (an electrolyte and a mineral) is in the blood. Sodium is both an electrolyte and mineral. It helps keep the water (the amount of fluid inside and outside the body's cells) and electrolyte balance of the body. Sodium is also important in how nerves and muscles work.

Too much sodium in the diet may raise blood pressure in some people. For those who have high blood pressure, eating foods with a lot of sodium makes their chance of heart disease, stroke, and kidney damage higher. Heart failure gets worse when too much sodium is eaten. It increases the amount of water the body holds in and this causes swelling of the legs and hands. Some people have problems when they eat more than 4,000 milligrams (mg) of sodium per day.

Low sodium levels are uncommon and most often occur as a side effect of taking medicines that make you urinate more, such as diuretics. Severe diarrhea or vomiting or heavy sweating may also cause low sodium levels.

A blood test to check sodium levels is done to:

- Check the water and electrolyte balance of the body.
- Find the cause of symptoms from low or high levels of sodium.
- Check the progress of diseases of the kidneys or adrenal glands.


- a little lupie -

Wednesday, March 2, 2011

BMP Test #2 - Calcium (Ca)

As part of our effort to decode the BMP (Basic Metabolic Profile), we'll take a closer look at the second test -- Calcium (Ca).

A test for calcium in the blood checks the calcium level in the body that is not stored in the bones. Calcium is the most common mineral in the body and one of the most important. The body needs it to build and fix bones and teeth, help nerves work, make muscles squeeze together, help blood clot, and help the heart to work. Almost all of the calcium in the body is stored in bone. The rest is found in the blood.

Normally the level of calcium in the blood is carefully controlled. When blood calcium levels get low (hypocalcemia), the bones release calcium to bring it back to a good blood level. When blood calcium levels get high (hypercalcemia), the extra calcium is stored in the bones or passed out of the body in urine and stool. The amount of calcium in the body depends on the amount of:

- Calcium you get in your food.
- Calcium and vitamin D your intestines absorb.
- Phosphate in the body.
- Certain hormones, including parathyroid hormone, calcitonin, and estrogen in the body.

Vitamin D and these hormones help control the amount of calcium in the body. They also control the amount of calcium you absorb from food and the amount passed from the body in urine. The blood levels of phosphate are closely linked to calcium levels and they work in opposite ways: As blood calcium levels get high, phosphate levels get low, and the opposite is also true.

It is important to get the right amount of calcium [at least 1000mg a day] in your food because the body loses calcium every day. Foods rich in calcium include dairy products (milk, cheese), eggs, fish, green vegetables, and fruit. Most people who have low or high levels of calcium do not have any symptoms. Calcium levels need to be very high or low to cause symptoms.


A blood calcium test may be done:

- To check for problems with the parathyroid glands or kidneys, certain types of cancers and bone problems, inflammation of the pancreas (pancreatitis), and kidney stones. Abnormal results on an electrocardiogram (EKG) test may be caused by high or low calcium levels.

- To see if your symptoms may be caused by a very low calcium level in the blood. Such symptoms may include muscle cramps and twitching, tingling in the fingers and around the mouth, muscle spasms, confusion, or depression.

- To see if your symptoms may be caused by a very high calcium level in the blood. Such symptoms may include weakness, lack of energy, not wanting to eat, nausea and vomiting, constipation, urinating a lot, belly pain, or bone pain.

- As part of a routine blood test.

A blood calcium test cannot be used to check for a lack of calcium in your diet or for the loss of calcium from the bones (osteoporosis). The body can have normal calcium levels even if your diet does not have enough calcium in it. Other tests, such as bone mineral density, check the amount of calcium in the bones.


- a little lupie -

Tuesday, March 1, 2011

Make It Through The Day

I got to catch up and chat with my punny, dorky sistah last night. Even though we can go for months without talking, we always pick-up right where we left off. She's one of the few that understand my loopy, quirky ways.

Talking to her reminded me of an email she sent to a bunch of us way back in highschool. With all the craziness of being a teenager, she sent us a list of tips to get through the day. It has been 13 years since her orignial e-mail, but we still send it back and forth to each other every couple of years to remind ourselves of the little things we can do to stay sane.

I've been thinking about this list lately and decided to pull it up for old times sake. Much of it is good advice for fellow lupies as well as everyone in general.

So without further ado, my friend -- in her infinite wisdom as a highschool teenager -- shares with us her tips to get through the day:

1) Theme song (who watches Ally McBeal?) -- Find a song that's upbeat and happy. Sing it to yourself when you feel stressed. It'll help raise your spirits!!

2) Smile -- If you smile at someone, you'll feel better. If someone smiles at you, you'll feel good too.

3) Think ahead to the next great thing -- Have something to look forward to. It can be small like a fun class or 3:00 pm or climbing into bed at night...anything that will motivate you to finish the day.

4) Give yourself a cool name which will distinguish you from all the rest (i.e. Lauren the Siren, Michelle the Goddess, or Liz the Princess)

5) Talk to yourself -- Give yourself pep-talks. Start with "I am (Liz the Princess). I will (understand trigonometry). I will (get help)"

6) Sing -- Any song, not just your theme song, will work. Sing loudly, sing boldly. Be Alanis Morisette when you're pissed, be Jewel when you're sad, and be Puff-daddy if you're a thug.

7) Remember your friends -- lean on them, talk to them, cry on their shoulders -- do whatever is necessary in order that you feel better about yourself.

8) Get a hug or give a hug... it can even be mutual. Hugs may seem too touchy for some of us but they actually do make you feel better. Just keep in mind who it is you're hugging...

9) Get a good laugh. We all know who's funny so go talk to that person!

10) Give a friend a compliment. This makes them feel better and it makes you feel better too cuz you now know that you have made them feel better. Get it?

11) If you get too frustrated, take a pen and a paper and write it all down. As an example, it was incredibly funny when I got back a homework from my math teacher and on the back I had written "This is sooooooo boring" and "I hate pre-calc" Oops!

12) When all else fails, scream. And I mean at the top of your lungs, as loud as you can for as long as you can. Just one continuous scream can put the whole world into focus. If you want to be discreet as I sometimes do, take a pillow and cover your face before you let your rage loose.

- a little lupie -

BMP Test #1 - Glucose (GLUC)

As part of our effort to decode the BMP (Basic Metabolic Profile), we'll take a closer look at the first test -- Glucose (GLUC).

A blood glucose test measures the amount of a type of sugar, called glucose, in your blood. Glucose comes from carbohydrate foods. It is the main source of energy used by the body. Insulin is a hormone that helps your body's cells use the glucose. Insulin is produced in the pancreas and released into the blood when the amount of glucose in the blood rises.

Normally, your blood glucose levels increase slightly after you eat. This increase causes your pancreas to release insulin so that your blood glucose levels do not get too high. Blood glucose levels that remain high over time can damage your eyes, kidneys, nerves, and blood vessels.

Blood glucose tests are done to:

- Check for diabetes.
- Monitor treatment of diabetes.
- Check for diabetes that occurs during pregnancy (gestational diabetes).
- Determine if an abnormally low blood sugar level (hypoglycemia) is present.

A test to measure blood levels of insulin and a protein called C-peptide may be done along with a blood glucose test to determine the cause of hypoglycemia.


- a little lupie -