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)

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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)

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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.

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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 -