Week 2 - Waiting for the Steroid Crash

Week 2 - Post Lemtrada

November 3, 2019

HAPPY HALLOWEEN!

Sorry to those anxiously awaiting my next post. ;). I was planning to post tonight but I am really tired.  I can definitely tell the steroids are finally wearing off.  I've been very tired all day today.  I've had no major symptoms this week; just more of the same trouble sleeping.  I'll post more tomorrow, I promise.

-UPDATE-

In my last post, I mentioned that this past week was busy.  It was busy because things kept breaking the week before.  I say breaking but it was just an odd week. First a woodpecker decided there was something good to eat in our chimney and pecked a hole in the siding.  So I had a pest control person out to look at the chimney/ spray it with insect spray.  Then the garbage disposal that we just had installed last month started making a lot of noise so the plumber was out to replace it.  I also had brackets on our shower glass replaced, we need to get trees trimmed so that contractor was out to take a look and our pool company plugged our solar heat system so I spent way too much time on the phone for that and the pool maintenance company and solar company were out to fix it. 😟  It was that type of week, lots of people in and out which made me a little uncomfortable.  I felt like I was exposing myself to too many people but I also told everyone that I was on an immune suppressing medication, needed to keep my distance and I did.

It's a good thing I still had plenty of energy earlier in the week. I could have been irritated by all the things going wrong and by my lack of sleep on top of it but I just floated happily through the week.  The steroids are still slowly wearing off and my sleep or lack of continues to be my biggest issue.   I went back to 1/2 an ambien on Sunday night after the whole one effected me so much.  That went the same, fell asleep quickly but was up really early.  On Monday night, I decided not to take an ambien to see if I could fall asleep without it.  Not a great idea; I was up until 3:30 and woke up at 6:30. I spoke to one of the neurologist in the Clinic.  He suggested I go two more nights with the ambien and then we would assess if I should add in some supplements.  Tuesday night I took about 3/4 of the ambien, I fell asleep fast around 10:30 and slept until my alarm went off at 6:40.  It was an amazing 8ish hours of solid sleep.  The next night, I was right back to my usual waking up in the middle of the night for a bathroom trip and waking up at 5:30.  I sent a message to my neurologists letting them know the sleep aid was still helping me fall asleep but not keeping me asleep.  They recommended adding in 1000-1500 mg of L-Tryptophan.  The PA had recommended starting at 500 and going up in 500mg increments. That's what I did but I stayed at 1000mg.  I took both the L-Tryptophan and Ambien on Friday night then only the L-Tryptophan on Saturday night.  Slept the same; fell asleep fine was up once in the middle of the night then early in the morning.  As I made my way to the end of the week, I could feel my energy level draining a bit.  I was feeling the lack of sleep more and more.  On Thursday, my energy just crashed around 3:30 and I ended up taking a nap.

Another thing I talked with my neurologist about was my feeling like a hypochondriac, he told me not to feel like that that they want me to over report. That made me feel a little better.  I'll just let them decide if it's something to worry about.  I also found out that I don't need to drink extra water; I just need to make sure I am hydrated.  I am not very good about that so even drinking the normal amount of water that you should be drinking anyway; makes extra bathroom trips for me.

I spoke with my One-to-One nurse this week as well.  I was asking her about dairy free yogurt; it's hard to know what is at risk for Listeria and what isn't.  She mentioned that the FDA keeps a current recall/advisory list for food contamination (link).  You can search the list for Listeria.  That's very helpful.  She also recommend doing the self symptom checks monthly on the day you go for your lab/blood work.  That was a good suggestion because I thought you needed to do those checks more often.

I got a recommendation to use D-Mannose to help prevent bladder infections.  I asked my neurologist's office about it and they said it has been shown to prevent bladder infections and recommended taking 500mg every other day or so. I get bladder infections frequently; it is something we need to keep an eye on.

I worked outside a bit this week; pulling weeds and digging up and moving a drip line. I made sure I put sunscreen on and as I was walking out the door, I remembered how my husband got a staph infection on his knee after we were working outside a couple years ago.  I grabbed some disposable gloves.  While I was outside, I realized I should have also put on some mosquito repellent.  I didn't get any bites, luckily.  Usually, I am a mosquito magnet.  It was nice to get outside and get some sun.

That was my Week 2. Week 3 will be interesting; the steroids will officially be out of my system.  We will see how that effects my mood and energy levels.  Hopefully, it will also mean that I can sleep better...until then.