Monday, April 23, 2012

Lupus and Pregnancy: Flare Triggers

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

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

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 -

Sunday, April 22, 2012

Lupus and Pregnancy: Medications

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

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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:

CATEGORYINTERPRETATION
      AAdequate, well-controlled studies in pregnant women have not shown an increased risk of fetal abnormalities to the fetus in any trimester of pregnancy.
      BAnimal 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.
      CAnimal 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.
      DAdequate 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.
      XAdequate 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:

 CATEGORYMEDICATION
      ALevothyroxine (Synthroid)
      CHydroxychloroquine (Plaquenil)
Prednisone
Erythropoietin (Procrit)
      DAzathioprine (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!

Saturday, April 21, 2012

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 -

Friday, March 30, 2012

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 -

Wednesday, March 14, 2012

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 -

Monday, March 5, 2012

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 -

Friday, February 24, 2012

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 -

Tuesday, January 31, 2012

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 -

Friday, January 27, 2012

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 -

Friday, January 20, 2012

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 -