The Steroid Roller Coaster

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If you have autoimmune disease, it’s likely you’ve had some experience with being on prescription corticosteroids steroids.  They can be quite effective to tamp down our overly zealous immune systems and get flares under control.  They are anti-inflammatory and are also used for other conditions like asthma, allergies, and joint inflammation.  It turns out at some point I’ve been on steroids for most of the above issues.  But while they often seem like a potential wonder drug--and at times they have been for me--they are not a medication to be taken lightly.

Let me start with the good news.   They work. When I’ve had bad flares, I mean flares where each second feels like an eternity of pain, getting infusions of high dose IV steroids usually gets things under control enough.  Nothing else has done that for me in those cases.

When I’ve gone to the emergency room with an anaphylactic reaction, steroids (combined with benedryl) gets the swelling of my throat under control.

For me, however, steroids are not just for emergencies. They are part of my monthly infusion routine to decease side effects and also prevent me from having an allergic reaction.  This is where the problems begin.

Because steroids change me.  I must admit it.  The first two days that I am on them, I usually don’t mind the increase in energy they tend to give me. I feel a bit like super woman. I have more energy, I can do more things with my daughter, carry more, walk more, it's great...at first.

But then I get what must be a milder version of what baseball players call roid rage.  I become quicker to frustrate and anger.  I still look like me (perhaps with a more swollen face, which is another side effect), but I certainly don’t feel like me.  Little things really bother me and my patience goes from what I would consider my usual fairly tolerant self to a short fuse.  I feel all around frustrated. I get mad at my husband and I'm often not sure why; basically because he’s simply the person who is with me the most.

I also feel less optimistic on steroids.  My mood drops and I feel down about having autoimmune disease and how it is impacted my life, career, and family enormously.  The glass goes from half full to half empty in a matter of two days.

Mood changes, mood swings, and depression are listed as side effects off steroids. Some of my doctors have told me my low doses shouldn't cause these problems, but they do for me. I have to be on this medication for approximately a week every month, so it's a regular cycle that I should be used to, but it catches me every time.  My infusions have helped bring me from being disabled by autoimmune disease to relatively functional again, but steroids are part of the bargain that comes along with it.

I don't really have a great solution for what to do, but I have compiled a list of things that are marginally helpful.

1)  Remind yourself that how you feel is not really reflective of who you are and this episode will pass.  Of course easier said than done.

2) Warn close family members that you might not be exactly yourself.  Apologize in advance for any ridiculous things you might say.

3) Ask those in your support network to remind you that how you feel is not realistic and temporary.

4) Create A mantra that you and your family can use. “It’s not me talking, it’s the steroids.”

5)  Engage in normal stress reduction techniques.  For me these might include walking, mediation, and making plans with others.

Most of the time, I feel like I am just trying to get clumsily through these tough periods.  I imagine many others with autoimmune disease confront this problem as well and I would love to hear your input on what works for you.

My Pregnancy and Sjogrens

I didn’t have a chance to write much about my pregnancy and I wish that I had.  At the time, it seemed like things couldn’t get any busier with my constant array of medical appointments, moving, and getting ready for baby.  What I’ve come to realize is that having a baby is even busier than having three to four doctors’ appointments per week and managing a chronic health condition, but that’s a whole other discussion.   Pregnancy and autoimmune diseases are an extremely important topic especially because the majority of people who suffer from them are women.

It used to be that many women with autoimmune diseases were told to forgo pregnancy.  This is no longer true for many of us, which is a welcome change. (I do realize that getting pregnant can be a difficulty for autoimmune disease patients, but I’m going to stick with my experience with the pregnancy part for now.) With careful pre-pregnancy planning and monitoring during pregnancy, it’s possible for things to go well and to be blessed with a healthy baby.  Now of course that doesn’t mean the pregnancies are easy and without risk, but a good outcome is no longer a rarity. In fact, a study from last year, the largest of it’s kind found that pregnancy is safer for lupus patients than originally thought with a 81 percent having what is medically called an “uncomplicated pregnancy”.  Click here.

For me, pregnancy was a bit of double-edged sword.  In order to make sure my baby was healthy, I had weekly fetal echo cardiograms throughout most of the 2nd and 3rd trimester.  These were critical to determine if the baby’s heart was developing correctly and did not develop “fetal heart block”.  Heart block can be a consequence of the SSA/SSB antibodies found in some Sjogren’s and Lupus patients.   I also saw my high-risk OB quite often in addition to my regular array of autoimmune appointments including rheumatology, rheumatology infusions, and ophthalmology to name a few.  To make things a little more tricky, my OB and pediatric cardiologist  (she monitored my baby’s heart) were at least an hour away so I would wiped out by the time I got back home.

The good news was that my Sjogren’s was much better while I was pregnant.  Yes, I felt the best I had in years.  My fatigue was less intense and I had more energy.  My neurological Sjogren’s symptoms were more in check and we were able to lessen the “pregnancy safe” medical treatments I needed.   Dare I say I felt pretty normal.  And while, many pregnancy women complain about brain fog for me it was also the opposite.  I felt mentally sharp again.   I “knew” this new state was probably temporary, but I secretly hoped it would last well past my baby being born.  I imagined going back to work part-time and excelling at both home, career, and motherhood and managing my health. (While material for another post, this was definitely too ambitious).

And I am not alone in having this experience.  Some autoimmune diseases are thought to improve during pregnancy.  My doctors who are Sjogren’s experts told me there was a chance that I would feel better based on their clinical experience.  Some describe pregnancy as a natural imuno-suppressive, which can be a good thing for those of us with over-active immune systems that go around attacking the wrong things.

This raises a number of big questions, which I am not nearly smart enough to answer.  What exactly happens during pregnancy that puts some autoimmune diseases into a less or more active state?  What role do hormones play in this process? And more importantly is it possible to replicate some of this without pregnancy?  I’m hoping that some scientists and doctors might already be tackling these questions.  If you're familiar with anyone doing work here please let me know.  I do wonder whether some of the mystery around pregnancy and autoimmune conditions may be part of the the key to better treatments in the future. 

I would love to hear from other autoimmune moms who were diagnosed prior to getting pregnant. I haven't been able to find very many.  What was your experience with autoimmune disease and pregnancy?

Being an Autoimmune Mama: Stronger than I thought

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Recently, my husband and I took our first trip with baby to Florida.  It was lots of work to prepare to get away and it took lots of convincing to get me to agree to fly with an infant, but I am glad that we did it.  Overall it was a great trip, but there was one adventure that I just had to share. 

It took me a day to get settled and feel comfortable.  We had gotten the baby into a new routine and now I was ready to relax.  I decided to take my very first bath since the little one was born. I had picked out an actual grown up book; I couldn’t wait to read while she napped quietly.  (This is a real luxury when you have a baby as I’ve quickly learned).  Just as I was beginning to feel like I was on vacation…the fire alarm started going off in our hotel. A false alarm? Not with my luck. A loudspeaker quickly blared that we must evacuate the building.  And where was I?  I was sitting in the bathtub in a room on the 12th floor.  My husband? He was downstairs on the beach.

So I found myself naked and alone with my precious daughter, hearing over a loud speaker that there was a fire.   A dream vacation memory in the making if there ever was one.  I didn’t have time to think. The adrenalin started pumping and I rushed into action.  My baby!  A fire! At first I almost ran out of the room without my clothes. I took a deep breath, threw some clothes on and put the baby in the stroller.

As soon as I got out the room, I started screaming in the hallway that I had a baby and needed help evacuating. There was nobody to be found. Everyone must have been at the beach for the day.  I headed toward the fire exit and started a twelve floor race down the steps, carrying my daughter in her stroller.  (I’m not sure if any of you have lifted a stroller recently, but they aren’t light).

I thought about carrying her down in my arms, but that didn’t seem like the safest option.  The stairway steps were concrete and I wanted my baby protected in something in case we encountered a fire.  I kept thinking over and over, “I must save my baby,” as I ran down the stairs, carrying probably over 35 pounds of baby and stroller. Any thoughts I had of stopping were erased when I smelled smoke in the stairwell. My heart raced faster and my legs took on a life of their own. I was glad for me pre-pregnancy attempts at a stairmaster.

It seemed like the run down the stairs was never-ending. Those fire safety messages from grade school ran through my head, but I wasn’t sure how they were going to help me in a stairwell. As I was nearing the bottom, a nice woman and her middle school aged son helped me to carry the stroller the frame the rest of the way.   When I made it through the fire exit onto the street, all I could feel was utter relief. 

Any thoughts if my sprint had been worth it disappeared when I saw two large fire engines and police vehicles camped in front of the hotel building.

I searched the crowd and saw my husband in the distance and screamed for him. He was petrified of course and had sent someone from the hotel to go and help us get down.

And you’ll never guess the cause of this whole hulabaloo, it was a dryer that had caught on fire.  It was classified as a minor incident according to the police and fire officials.  But it was a fire. For me personally, however, it was major event.

Who would have thought that I would actually have the strength to do something like that?  On a good day lifting 10 pounds can exhaust me.

It gave me the confidence to know that as a person with autoimmune disease, I am up for the major challenges of parenthood.  While I might have to do things differently and creatively, when it comes down to it, I will jump through hoops to protect my daughter.  I also learned adrenalin is some pretty powerful stuff.