Small Victories

I woke up for the first time in weeks without joint pain and stiffness (okay, maybe just a little, but much improved)!

I went to do my blood work and there was no line!

I went to the hospital mail room to mail out my perscription drug claims and caught the mail man before he left with the outgoing mail for the day!

I got out of the parking structure within the grace period and didn't have to pay!

Today is shaping up to be a good day!  What I've learned is that I have to make the most of these good days because I never know how I'm going to feel tomorrow...

- a little lupie -

My View Series #1

I was doing some internet research on what could trigger a lupus flare and came across a magazine called Lupus Now.  It had some good articles to help lupies deal with their symptoms and learn to live with lupus.  They have a section called "My View" where they have readers respond to a question.  In the Summer 2011 issue, they asked, "What would you tell a friend who has just been diagnosed with lupus?"  I really liked some of the responses, so I'll share some of them in a series of posts.

 

*****

It's going to be a fight, but you will find a strength inside you that you never thought you could have. When doors to life and normalcy shut, fight like hell to find a window. If you keep fighting back, lupus will never be able to take over your life.—Charlene

- a little lupie -

Tis the Season...

...for lupus flares :(

I think I've mentioned before, but the holidays seem to be the time for my lupus to flare.  It may have to do with the weather and the additional flurry of activities.  I don't feel particularly stressed, but I do have a lot more going on, both at work and at home.

This year, I am also dealing with being off of some of my medications.  I'm no longer taking prednisone, azathioprine, and procrit.  Some of the symptoms I've noticed are joint pain, fatigue, and mouth sores.  For the past week, my eyes have felt strained and I've been getting bad headaches...but I'm not sure if that is due to the lupus or not.

I had another outdoor service project that I had to go to for work on Friday.  I was dreading it all month.  The service project is "mandatory" and while I probably could get a medical exemption, I haven't decided how "public"  I want to be with my condition.  I don't want people to define me by my condition and I don't want people to feel sorry for me.  At the same time, I do want people to understand why I may not be full of energy and excited to do these types of activities.  So, I went to the service project on Friday but tried to lay low and stay in the shade.  There were a few others doing the same, and I've learned not to judge people as being "lazy" or "unmotivated," because I never know what their story is.  Sometimes I do wonder if others are dealing with the same thing as I am.

I did get a few mosquito bites that are large and painful.  As I've mentioned in a previous post, I'm wondering if my extreme reaction to mosquito bites is related to lupus.  I think I'll ask Rheumy about this at my next appointment.

I don't get the typical malar rash from the sun that other lupies get, but I am wondering if I have some kind of photosensitivity.  The sun seems to zap my energy and can make the malaise kick-in.  When I got home from the service project, I took a shower and knocked out at about 4:30 pm.  I slept all the way until 8:30 am the next morning and still felt tired.  I forced myself out of bed to eat and move around but was dealing with a headache that only got worse with bright lights.  I decided to head in early again that evening and finally feel back to normal today.

I've kind of been in denial about this flare because I was doing so well.  I was just about to hit my 6-month remission milestone, and I'd hate to have to restart my clock again.  I feel like it is passing, so I'll see what Rheumy says when I meet with him in a couple weeks.

- a little lupie -

Update

Okay, I am horrible at updating these days, but that is a good thing!  When I first started this blog, I wrote regularly because lupus was always on my mind.  These days, it is something that I keep in the back of my mind, but I've learned to manage and live with.

In my last post, I mentioned that I have been gaining weight like crazy.  I checked my thyroid level and it is in the normal range, so that's likely not the cause.  I'm trying to make an effort to "get moving" more.  Now that the weather has cooled down a little, we're taking our dog walking after work more often.  Nothing too strenuous, but it gets the blood flowing a bit.

I've been tapering down my Prednisone for the past few months and have been completely off of it as of October 1st.  I had a little joint pain and fatigue the first couple days, but my body has adjusted and I am doing well.  My blood test last week showed that I am stable.  My next visit with Rheumy is in two months, and if I remain stable, he'll give us the all-clear to start trying for a baby.  I'm not sure if we're ready for that yet, but it is nice to have one hurdle out of the way.

- a little lupie -

Not so Little Lupie

I have been really bad at updating. I am still doing well. My blood counts continue to remain stable and somewhat normal (low side of normal). I am down to 1 mg of prednisone daily, but despite that, I am gaining weight like crazy!!! I've been gaining about 2 pounds a month, and I feel like I haven't been eating more or exercising less than normal. I've tried to make smarter choices when eating and even went to a crossfit class (where I DIED), but the scale keeps going up. I brought this up to Rheumy at my last visit and we're going to check my thyroid to see if my medication needs to be adjusted.

Other than that, all is good in lupie land. I still don't feel like I have tons of energy, but when I look back at how I felt a year ago, I am 1000% better. It is hard to relate to how fatigued I was back then...even though I went through it, I have a hard time remembering exactly how debilitating it was. I'm thankful to be able to make it through a day of work now and even have energy to run some errands or go out to dinner afterwards. I still have to be careful not to overdo it and try to keep a day free to just relax and recuperate.

 In case anyone still reads this, I'll try to be better about updating...

 - a (not so) little lupie -

Just a Little Pic-y

Still doing good!

I didn't update after my last Rheumy visit, but he agreed that I am doing well.  The ds-DNA level is an indicator of how active lupus is, and it is much, much lower than it was a year ago.  It isn't down to "normal" levels, but Rheumy said that since I am feeling good and have no other symptoms, there wouldn't be much benefit for me to increase medication in order to get these numbers down.  In fact, it would probably increase side effects.  We are going to start weening off the Prednisone now and continue monitoring to see how that goes.  The good news is that I am considered "in remission" and I can start the 6 month clock for time in remission before trying to get pregnant.

In not so good news, I went to see Hemey today and think it is time to get a new doctor.  I waited in his office for an hour and a half on my lunch break then saw him for 2 minutes as he looked at my blood work, told me I was too healthy for a shot, then told me to come back in a few weeks.  Since my blood work has been consistently stable, I asked if I could come in once a month instead of every other week.  He said one month this time (probably since he is going to be on vacation for the next couple weeks), but that I shouldn't count on it because I could go downhill at any time.  I explained to him that it is difficult for me to take so much time off of work (his office hours are 8:30 am - 4:00 pm, with the last appointment at 3:45), but then he started lecturing me about how I have to make my health a priority.  I said I know, but it is still hard to take off of work so often.  He then told me again how important it is to make my health a priority...especially because I didn't before.  WTF?!  As if it is my fault I have lupus?  Since I was diagnosed I have been very diligent about taking care of myself and following doctors orders, and now he tells me I don't prioritize my health because I don't want to pay him to see me for 2 minutes every other week to read my blood test results?!  Anyways, I am not impressed with his level of care or bedside manner, so at my next Rheumy appointment I am going to ask for another referral.  Sorry, just had to vent...

- a little lupie -

Doing Better

I got my lab results in the mail today.  I don't go see Rheumy until Friday, but he had me take the labs a week before since some of the tests he ordered would take longer than the normal CBC.  One of the tests he ordered was the Anti-dsDNA test, which is a specific test for lupus.  If these antibodies are present, it is a strong indication of lupus.  When I was first diagnosed, Dr. C ordered the test and the result came back as ">300".  A result of <=4 is considered negative, 5-9 indeterminate, and >=10 is positive.  Needless to say, >300 was a huge indicator.  The lab results I just got today show my Anti-dsDNA level at 29, which is way lower than it was back last January.  I'll have to ask Rheumy about what that means...perhaps it is lower because I'm not flaring?

I don't want to jinx it, but my other lab results look good too!  My White Blood Cell Count is 3.9, which is considered in the normal range (3.8-10.8).  My Red Blood Cell Count is still a little low at 3.3, but my Hemoglobin is 12.1!  That is the highest it has been since my diagnosis, and it is considered in the normal range (12.0-16.0).  I have been feeling a lot better, so I'm glad my lab results are reflective of that.  My sedimentation rate is still a little high, indicating some inflammation, and there are trace amounts of blood in my urine, so that is something we'll need to continue to monitor.

I have a sore in my mouth under my tongue which has been bothering me for the past few days.  It is a symptom of lupus, so I'll let Rheumy know about it on Friday.  Other than that, I have been doing well.  I hope Rheumy agrees!

- a little lupie -

A Belated Happy World Lupus Day

I really have been neglecting my lupus updates! Not only that, I have been neglecting checking in on some of the other lupies that I follow through their blogs. I just read a post from Cori and realized that I missed World Lupus Day on May 10.

Check out her post here: http://corislupusupdates.blogspot.com/2012/05/what-world-lupus-day-lupus-awareness.html

I relate to a lot of what Cori says in this post. I disclose and vent a lot about my lupus situation on this blog, but I don't go advertising it or my situation on Facebook or in daily interactions. My family and close friends know about my condition and will occasionally ask how I am doing, but I never know if they want to know more than just "fine" or "good". This blog gives me the opportunity to just let everything out and people can choose to read it or not. For those of you who do read, please know that I appreciate that you are interested in learning more about lupus.  This has definitely been a learning experience for me -- not only in learning about the disease itself, but also in how to cope and to be more empathetic to others who are dealing with what life has dealt them.  If you ever have questions or want to know more, feel free to ask (or leave a comment)...I'm happy to discuss!

- a little lupie -

No News is Good News!

I know it's been a long time since I've updated, and it is because I have been busy living life! My hemoglobin levels over the past month have been just above 11. That means that I don't qualify for the Procrit shot because according to the insurance companies, I'm "too healthy." I'm still not in the normal range (which for women would be 12-15), but I do feel a whole lot better than when I was in the 9-10 range. I have energy to get through a full day of work and go out for dinner or run errands afterwards. I no longer go to bed at 8. I'm able to do things on the weekend other than recuperate from the work week. I'm finally beginning to feel "normal"! I just need to be careful to not over-extend myself.

I have also stopped taking the azathioprine in hopes of having the option of getting pregnant in the next few years. In order to aid with me getting off the medication, we've increased my Prednisone dose to 5 mg, which is still considered a low dosage. This may be why my hemoglobin levels, red blood cell, and white blood cell counts have all improved -- they are all at the highest levels since my lupus diagnosis. Hopefully they will remain where they are as I ween off the Prednisone. Technically, I could continue taking Prednisone while pregnant, but of course, the less medication the better.

Rheumy is running a few additional lab tests on me this week to check for antibodies that may affect me and/or baby if I get pregnant. I see him next week for the results, and I hope I have more good news to share!

- a little lupie

P.S. For those who read my last couple of posts and thought I was pregnant, sorry! I forgot about the backwards chronological aspect of blog posts and now realize that I should have put my "not pregnant!" disclaimer on all the pregnancy series posts! I'm not done with the series yet, but I have been slacking because the next post in the series ( how lupus affects pregnancy) is the most complex aspect and will require more research. It will be coming, though!

P.P.S. Sorry for any typos or inadvertent auto-corrects! I am trying to become more mobile-saavy and typed this whole thing out on my phone! Okay, maybe it has less to do with becoming mobile-savvy and more to do with me being too lazy to go get my computer :)

Lupus and Pregnancy: Flare Triggers

Part of a series of posts dealing with lupus and pregnancy.

ETA: (No, I am not pregnant)

===============

Does pregnancy affect lupus?  (Does pregnancy cause lupus to flare?)

This is a difficult question to answer because there is so little that is understood about lupus itself.  As mentioned in previous posts, lupus is very different in each patient.  Symptoms and triggers vary and flares can often arise unexpectedly.  Some of the common triggers of a flare include sunlight (UV rays) and stress.  Some also believe that hormones could play a part in triggering a flare.

I have read about lupus patients who have seemed to get worse during pregnancy.  I have also read about lupus patients who have never been better than when they were pregnant.  When I talked to MFM, she didn't think that pregnancy made you any more likely to have a flare than if you were not pregnant.  Of course, if you needed to stop taking a certain medication because of pregnancy, that change in medication could increase your chance of a flare.  But pregnancy itself, not likely a trigger.

This is my theory: I think that whether you experience a flare (pregnant or not), depends a lot on your ability to manage your stress.  This not only includes stress from work or social commitments, but also stress on your body from illness or overexertion (which I believe a lot of lupies, myself included, are guilty of).  When you are pregnant, your body goes through a lot of change.  Change = stress.  Whether or not you flare may depend on how well you are able to handle that stress.

I feel like I should go take some yoga or meditation classes now...


- a little lupie -

Lupus and Pregnancy: Medications

Part of a series of posts dealing with lupus and pregnancy. 
ETA: (No, I am not pregnant)

===============

Medications during pregnancy is such a confusing topic.  A search on the Internet will bring up tons of contradictory information, and doctors will have differing opinions over whether or not a medication is safe.  Part of this confusion is because there are very few studies done on lupus medications and pregnancy.

In 1979, the FDA introduced a classification of fetal risks due to pharmaceuticals.  These categories are:

CATEGORY	INTERPRETATION
A	Adequate, well-controlled studies in pregnant women have not shown an increased risk of fetal abnormalities to the fetus in any trimester of pregnancy.
B	Animal studies have revealed no evidence of harm to the fetus, however, there are no adequate and well-controlled studies in pregnant women. OR Animal studies have shown an adverse effect, but adequate and well-controlled studies in pregnant women have failed to demonstrate a risk to the fetus in any trimester.
C	Animal studies have shown an adverse effect and there are no adequate and well-controlled studies in pregnant women. OR No animal studies have been conducted and there are no adequate and well-controlled studies in pregnant women.
D	Adequate well-controlled or observational studies in pregnant women have demonstrated a risk to the fetus. However, the benefits of therapy may outweigh the potential risk. For example, the drug may be acceptable if needed in a life-threatening situation or serious disease for which safer drugs cannot be used or are ineffective.
X	Adequate well-controlled or observational studies in animals or pregnant women have demonstrated positive evidence of fetal abnormalities or risks. The use of the product is contraindicated in women who are or may become pregnant.

The medications I am currently taking fall into the following categories:

CATEGORY	MEDICATION
A	Levothyroxine (Synthroid)
C	Hydroxychloroquine (Plaquenil) Prednisone Erythropoietin (Procrit)
D	Azathioprine (Imuran)

I think everyone agrees that you need to weigh the risks of a medication against the benefits, but the difficulty is that this can be subjective.  In addition, each patient is different, so each situation must be looked at individually...there is no one-size-fits-all solution.

For my personal situation, the maternal fetal specialist (MFM) I consulted with recommends that I stay on Levothyroxine.  This is the drug that manages my hypothyroidsm.  Not only has the drug been shown to be safe to use during pregnancy, but not taking it could have adverse effects.  Hypothyroidism in the mother has been shown to affect brain development in the fetus and has been linked with developmental delays and lower IQs after a child is born.

MFM also recommends that I stay on Plaquenil.  In her opinion, it is safe for use during pregnancy, and some studies have indicated that it may even have a benefit to the fetus.  Most importantly, it will help to manage the lupus and lessen the chance of a flare, which could lead to further complications and put both baby and mother's health at risk.

I did some additional research online and found a study by Pediatric Rheumatology that concluded "HCQ [hydroxychloroquine] is not associated with any increased risk of congenital defect, spontaneous abortion, fetal death, pre-maturity or decreased numbers of live births in pregnant patients with auto-immune diseases.  Our data demonstrate that HCQ is safe for use during pregnancy."  However, there are still some concerns that there may be some drawbacks if you are considering cord blood blanking since the medication is passed to the fetus through the bloodstream.

MFM said that a low dose (<10 mg) of Prednisone would also be okay for me to stay on if it prevented me from flaring.

The Azathioprine has a risk of causing birth defects, but having a flare would put me and the baby at much higher risk.  Because of that, MFM would be okay with me staying on Azathioprine if it prevented me from flaring.  If I did have to stay on it, we would try to lower the dosage in the last trimester to lower the risk of it affecting the fetus.  Rheumy had originally put me on the Azathioprine to get me off of the Prednisone (which would have negative side effects for me if I relied on it long term), but MFM said that between Prednisone and Azathioprine, she would much rather have me on a low dose of Prednisone while pregnant.

At my appointment with Rheumy this past weekend, we discussed what MFM recommended.  We decided to try to lower my dose of Azathioprine and increase my Prednisone a little to see how my body reacts (We also increased the Prednisone because my WBC count is still low -- 1.5).  I would really like to get off the Azathioprine if possible...not only because I don't like putting drugs into my body, but because I really hate swallowing those pills!  I have a follow-up appointment in 4 weeks...wish me luck!

- a little lupie -

P.S. While doing a Google search for Plaquenil effects on pregnancy, I came across RA (maybe) Mamma's blog.  She has Rheumatoid Arthritis and was dealing with many of the same questions and concerns as I am.  I could relate with a lot of the things she said, so if you're interested in reading more, go check her out!

Lupus and Pregnancy: Intro

The first in a series of posts related to pregnancy and lupus.

===============

First of all, let me start by clarifying that I am NOT pregnant.

I've been debating about writing this post for a while now.  I wasn't sure if it was something I wanted to share with the interwebs, but it is something I'm sure a lot of lupies deal with, so I thought it was important to discuss.

My husband and I have been married a little over two years and we are often asked when we are going to have kids.  Most of the time I just smile and say "not yet," but inside a feel a little twinge of resentment against lupus.  While pregnancy with lupus can be successful, it comes with increased risk, and my doctors have recommended that I wait until I am in remission for at least six months before trying to get pregnant.  According to Rheumy, I am not in remission yet, so I have to continue to wait while my biological clock ticks away (I'm 31 now).

Lupus pregnancies are considered high-risk due to an increased risk of late-term miscarriage, premature delivery, and preecalmpsia.  In addition, there is an increased risk of heart problems in the baby and a risk of passing on neonatal lupus.  Depending on the medications the mother is taking to manage the lupus, there may be additional risks to both her and the baby.

Because of all of this, there is a little more planning that needs to be done prior to getting pregnant.  I've discussed getting pregnant with Rheumy and he suggested I consult with a maternal fetal specialist (aka a perinatologist) to assess my health and medications prior to getting pregnant.  I met with one last week and we discussed a lot.  I wish I had taken notes, but I'll do my best to recall our conversation in the next series of posts.  Much more to come...

- a little lupie -

Hemey Update

Hemoglobin dropped to 9.0  :(

Hemey said that it could partially be caused by being sick and due to having my period recently.  Whatever the case, he raised my Procrit dosage to 8,000 units weekly (up from 4,000 units).  It is still a relatively low dose, but we are aiming to keep my hemoglobin level as close to 11.0 without going over as possible.

Hemey was about to let me go, but I was being nosy and looking at my lab results and noticed that my WBC count was down to 1.5.  I pointed this out to Hemey, and he concurred that this was very low.  Hemey decided to have me come in again next week to check my blood counts again and warned me that if I get chills or a temperature of 100 degrees or higher, I need to come in.  He said that it is dangerous with a WBC count that low.  If WBC count is still low next week, I'll need to check in with Rheumy as well and will probably need to increase my Prednisone dosage.

Other than my lingering cough, I have been feeling okay.  I'll still try to take it easy this weekend and get lots of rest.

- a little lupie -

A Sick Lupie

I have been fortunate up until now, but I caught my first cold since being diagnosed with lupus.  It started with an itchy throat that developed into a sore throat and nasty, mucousy cough.  I also experienced fatigue and a slight fever and chills.

I debated whether or not to go see the doctor.  I really hated to go in if they were just going to tell me to go home, rest, and drink lots of liquids.  I would normally just wait this kind of thing out, but didn't know if the lupus changed anything.  I felt better in the morning, so I decided not to call the doctor.  Later that night, however, the throat became more sore and the cough became more persistent.  My nose was stuffed, so I had to breathe through my mouth, which exacerbated the sore throat and the cough.

The next day I conceded to calling the doctor to get checked out just in case.  I remembered that my white blood cell count was low and that could lead to prolonged illness.  I'm also on azathioprine, which is an immune suppressing drug.  I figured better to go in then be sorry later.

Doc checked me out and turns out I have a sinus infection and a slight ear infection.  These probably developed from the cold I had since my immune system was low.  I got some nasal spray, antibiotics, and cough syrup to help me through the next few days.  If I don't get better in a week, I'll need to go back and see Doc.

One other thing I'll need to look out for is that this may cause a flare.  My body will be trying to fight off the infection, but this increase in immune activity may cause my body to start attacking the "good" cells as well.  Let's cross our fingers that my body decides to stick with just fighting the bad guys...

- a little lupie -

Another Celebrity Lupie

 Nick Cannon (actor, rapper, host of America's Got Talent, Mariah Carey's husband, and general celebrity) just announced that his recent health problems are a result of Lupus Nephritis, which means that the lupus is attacking his kidneys.  The doctors initially diagnosed him with kidney disease but later classified it as an autoimmune disorder.  He was hospitalized twice since January, once for kidney problems and once for blood clots in his lungs -- both of which have been linked to Lupus.

The doctors have advised him to get a lot of rest (at least 6 hours of sleep) and to eat a healthy diet (no McDonalds!), which is good advice for all of us.  Nick has also stepped down from his job as a radio host in order to focus on his health.

Fox8 News Article | Yahoo Article

Nick, thank you for opening up and helping to increase lupus awareness...I wish you the best!

---

Other celebrities who have been reported to have lupus are:
Toni Braxton (singer)
Seal (singer) - the scars on his face are from discoid lupus
Lady Gaga (singer) - tested "borderline positive for lupus antibodies"
Ferdinand Marcos (former president of the Phillipines) - died of lupus in 1989
Portia de Rossi (actor; Ellen DeGeneres' wife)
Louisa May Alcott (author)
Barbara Bush (former First Lady)
Millie Bush (dog of George and Barbara Bush) - yes, dogs can get lupus too!
Michael Jackson (singer) - rumored, but unconfirmed
More

- a little lupie -

Doctors Updates

I've had quite a few doctor appointments from my last update.  I usually update after each one, but I've been feeling kind of lazy.

Last friday I went to Hemey to get my Procrit shot, but we ran into a problem with my insurance.  You may recall back in October I had decided to opt-in to my company's insurance plan.  I had opted out the year before since I was covered under my husband's plan and my company offered us a cash incentive for opting-out.  I thought I was healthy at the time and rarely went to the doctor.  How things have changed!  This year I decided to get insurance through my company so that I would have dual coverage.  When you have dual coverage, your insurance is primary and the one through your spouse is secondary.  (Also for those interested, if your children are covered by two insurance policies, the parent who's birthday comes first in the calendar year is the primary.)  Anyway, getting to the point, I forgot that I would need to get pre-authorized for my Procrit shots under my new insurance policy.  Because of this, there were problems with my billing, so I wasn't allowed to get my Procrit shot for the week.  They turned me away and said they would call me when I could come in for my next shot.

After that I headed down to the laboratory to get my bloodwork done.  Rheumy had faxed in my order.  I pulled a number and waited my turn only to find out that I was at the wrong laboratory.  I was in the "Medical Plaza," not the "Physician's Tower" of the hospital.  Wouldn't you think that the tower with all the doctors offices in it would be called "Physician's Tower" and the one with the hospital would be called "Medical Plaza"?  Apparently that is not the case.  They were able to call the other location to fax over the order, but I already felt like my day was off to a rough start.

Next I headed to my Opthalmologist for my annual eye exam.  I don't have a name for her yet...guess we'll go with Opthy.  Luckily everything went smoothly at Opthy with no real surprises or setbacks.  Because I am taking Plaquinil, she needs to check for drug toxicity and damage to my retina, which is a side effect of the drug.  She had taken a baseline image of my eye a year ago when I started Plaquinil.  Everything looked alright.

I was finally done with doctors for the day and had decided to take the rest of the day off from work.  Hubby and I went to eat some sushi for lunch.  Yum!

The next day, I had an appointment with Rheumy.  My blood counts were looking better.  Not great, but back to my "normal" lows.  We decided to stay with the same drug cocktail and check back in 8 weeks.  I tend to judge my progress by how far apart my appointments are, and 8 weeks is pretty good!  So far it is the longest I've gone between appointments.

Yesterday I got a call from Hemey's office saying that they hadn't heard back from the insurance company yet so not to come in for my shot this week.  I haven't been feeling too bad despite missing last week's shot, but was a little worried about missing two weeks.  I am kind of glad to be on the Prednisone, because I think that is helping to keep my energy up a bit.

Today at work I got the call.  Insurance came through and I can get my shot!  Who knew I could ever be so excited about getting a shot?! 
- a little lupie -

Lab Results

I got copies of my latest lab work results in the mail today.  While my counts are all still low, they are improved from the prior week's test.  Here's a rundown of the counts that I monitor most:

WBC Count - 1.5 (normal is 3.8-10.8) -- this is lower than my "normal" low WBC count.  The prior week was 1.2.

Abs Neutrophils - 0.92 (normal is 1.80-7.70) -- this is the one Rheumy was worried about.  Hospitalization usually occurs at 0.50.  My test one week prior to this was at 0.75, so it has improved a little.

RBC Count - 2.79 (normal is 3.60-5.40).  Prior week was 2.59.

Hemoglobin - 10.1 (normal is 12.0-16.0) -- this is the one that I am taking Procrit for.  It was 9.4 the prior week.

Sedimentation Rate - 55 (normal is 0-20) -- this is the one that measures inflammation.  Prior week was at 87, my all-time high (since my lupus diagnosis).

I have another blood test scheduled this week, but this time with Hemey, so I'm interested to see what the results are.

- a little lupie -

Hello again, Mr. P

Blood cell counts came back low again...gotta start back up on prednisone :(

More info on Neutropenia: http://www.medicinenet.com/neutropenia/article.htm

- a little lupie -

Flaring

It's not a good sign when Rheumy starts my appointment by asking if I've been sick.  On the contrary, I've been feeling pretty good.  Then he asks if I've had any mouth sores, rashes, or symptoms of Raynaud's.  My fingers have gotten white when cold, but that is fairly normal for me.  He asks if I've experienced any lupus symptoms lately...I recall that my finger joints were bothering me a little bit last week.  Then he hits me with the news -- my blood work does not look good and he thinks I may actually be flaring.

My hemoglobin level dropped back down to 9.5.  As a reminder, hemoglobin measures the amount of oxygen being carried by your red blood cells.  Normal levels for a female are between 12-16 g/dL.  I have been hovering around the 10.5 range for the past couple months with the help of taking weekly Procrit shots.  I was quite surprised to hear that my hemoglobin level dropped to the level I was at before starting Procrit, because I've been feeling like I have more energy lately.  Previously when I was at this level, I had very little energy and could barely make it through the day.

My sedimentation rate also shot up.  As a reminder, The  Erythrocyte Sedimentation Rate (ESR) test is a blood test used to detect and monitor inflammation in the body. The test measures the rate at which red blood cells (RBC) settle and is measured in millimeters per hour. The sedimentation rate increases with more inflammation. The normal rate 0-15 mm/hr for men and 0-20 mm/hr for women.  Rheumy said that when I first came in, my sedimentation rate was in the 60s.  This is when I was experiencing extreme joint pain and could barely stand or do things with my hands.  With treatment, it has steadily gone down and I've been hovering in the 20s-30s.  With this last test, I was in the 80s!  I did notice a little joint pain last week, but nothing like what I had a year ago.

The biggest worry with my bloodtest, however, was my white blood cell count.  It had dropped to 1.2 (normal range is 3.8-10.8).  There are different types of white blood cells, and the one Rheumy was particularly concerned about was my neutrophil count.  Neutrophils are the white blood cells that help your body fight off infection.  I'm not sure exactly what the unit of measure is, but Rheumy mentioned that when you level hits 0.5, you are usually hospitalized.  My level is at 0.75, so it is dangerously low.  Rheumy warned me that if I get sick or have a fever, I need to call him right away.  I came home and did a little research on Neutropenia.  It is interesting to note that when the Absolute Neutrophil Count (ANC) level is below 500 (which may be equivalent to the 0.5 measure Rheumy used), people do not show any sign of infection.  This is because of the lack of neutrophils to elicit any biological response.  Hopefully that is not why I don't feel sick...

We discussed starting me back on prednisone to bring my blood counts back up, but I was hesitant to get back on steroids.  We could stop taking the azathioprine, which could be causing the low blood counts.  However, if the low blood counts were caused by lupus and not azathioprine, getting off of the medicine would make it worse.  Since I was feeling good, we decided to wait and test again next week.  It may have been that my body was being temporarily stressed and caused these abnormal blood counts.  If things don't look better next week, we'll need to take action.

For now, I'm going to try to take it easy and let my body rest.  I may be to blame for this flare because I have been pushing my body too hard.  When I start to feel good and have more energy, I want to take advantage of it.  Trying to do too much, however, will send me into a flare.  I think this is a problem that many lupies deal with.

- a little lupie -

One Year...

Today marks one year from my lupus diagnosis.  

The first year of lupus was a year of survival for me.  I gave in to lupus a lot and did whatever I needed to make it though the day.  I spent many days doing nothing but lying in bed.  I didn't exercise much because my body was always too tired.  After not being able to keep anything down and losing ten pounds, I gained my appetite back and ate anything and everything...it just felt so good to eat.  When I started gaining the weight back and then some, I blamed it on the prednisone.  I basically just did what I could to survive, and I did -- I survived a year with lupus.

But going forward, I want to do more.  I don't want to just survive, I want to live.  I want to be able to go out and be active again.  I want to eat healthier and take less medication.  I want to take care of my body so that it can take care of me.  I want to prove that although I have lupus, it doesn't have me.

- a little lupie -

A New Year's Resolution

I just told one of my friends about my lupus condition and shared this blog with her.  She was reading it from the beginning and I suddenly get a chat message from her: "You go the whole day at work without peeing?!?" or something along those lines.  I found it kind of funny that out of everything she had read, that is what stood out to her.  I confirmed that it was true, but didn't remember writing about it.  She cited "Last post in January" for me.  The discussion that followed went something like this:

Her: Do you do that on purpose?!
Me: No, I just don't drink enough water during the day to have to pee.
Her: I will bite my tongue.
(One minute later)
Her: You really need to drink more water.  I'm really bad at biting my tongue.
Me: I know.
Her: Blah blah blah....water...blah, blah, blah....
Me: Okay, okay...I will make it my New Year's Resolution to drink more water.  I think I'll even make this my next blog post.

...and here we are...

- a little lupie -