Week 5 - Quiet, finally!

Week 5 - Post Lemtrada

November 24, 2019

This week for the most part was quiet and boring...finally!!!  I started sleeping through the night toward the end of the week too.  I am still pretty low energy and fatigued but it is such a relief to be sleeping better.  Being low energy and fatigued is actually nothing new for me and I probably wouldn't even have noticed if I hadn't had a taste of what it's like to be high energy and in a good mood with the steroids.  

I kept myself entertained this week by reading "Where the Crawdads Sing", good book; I've been cooking quite a bit and I've been researching functional medicine doctors. My daughter's birthday was on Friday (I have a 17-year old now!!! 😱).  We broke with family tradition, had her birthday dinner at home and she picked what we made.  I made a gluten free birthday cake for her.  King Arthur's gluten free yellow cake mix is pretty good.

I got the results of the missing blood tests and they were all within expected range.

Not much to write about.  I didn't have any issues this week; no chills or aches.  The only thing new is that my skin is really dry and flaky which is typical for this time of year when the furnace starts running but it's worse then normal.  It seems like I am shedding a whole layer of skin at once like I am molting. 😳 A couple of weeks ago the same thing happened with my scalp.  It was one big flake. 😝  Like with the inside of my cheek last week, it makes me wonder "are any of the medications making it worse?".  Not that it's really a big deal; just something that's going on.

Well, that's really all I have.  I hope everyone enjoys their Thanksgiving holiday.

First Follow-up

First Neurology Follow-up Post Lemtrada

November 18, 2019

My first follow-up with the Neurology Clinic was uneventful.  My T & B cells are below detection limits which means I have no immune system and the Lemtrada did it's job.  The PA said we would start to see them come back around the 8-week mark and that I should continue to be vigilant about staying away from anyone who is sick (my daughter has a cold right now 😞) and staying away from crowds.  I asked her about different appointments and going out in general and she said she would advise if it's something I don't have to do, not risk it.

The lab didn't get all the tests they needed so I have to go back in.  The main one there is how my thyroid is doing.  I take a low dose of Amour Thyroid now so they my adjust that depending on the results.  They also check to make sure the Lemtrada isn't giving me Thyroid disease which is a possible side effect.

We talked about the process when my T & B cells start coming back.  Sometimes the B cells start to repopulate faster then the T cells and if that happens they will give me a medication to knock the B cells back a bit.  I've been reading more blogs and message board comments from other Lemtrada patients and it seems like people note issues around 7 months.  Either suddenly not feeling good or getting new relapses.  I asked if this was because of the T & B cells repopulating at different rates.  She said it's actually done to prevent additional autoimmune complications like the thyroid issue.

We also talked about the problem I had with the probiotic and she recommended just not taking one right now.  I have been adding dairy free yogurt to my occasional smoothie and haven't had an issue with that.  I asked about how vigilant I should be with wearing sunscreen given my family has a history of skin cancer and I've had one spot myself.  She recommended using it everyday especially on the most exposed areas.  I use mineral foundation which has some SPF qualities but I think I am going to get a moisturizer with it as well.  I'll need to start thinking about my hands too since they are always exposed.  

The last thing we talked about was how the Solu-Medrol affected my mood for the better and what that means.  My husband had been doing some online research and found that Solu-Medrol has an effect on cortisol levels which affects your mood, energy level and also makes sleeping difficult.  We had talked about my going to see a function medicine doctor about hormones in general before and she suggested that maybe this is something they could look at as well.  She also said that the first two month are the hardest due to dips in energy level and just overall how you feel.  So something to look forward to in the next 4 weeks. 😉

That was it.  I'll post a page with some of my blood results if you are really interested and will post again on Sunday.

Week 4 - A Rough One

Week 4 - Post Lemtrada

November 17, 2019

This was a rough week; some things maybe made worse by the Lemtrada added to the continued sleep deprivation made me zombie-like.  I am at the very end of my Invisalign treatment. I switched out to my very last tray last week, Thursday.  By Saturday, the inside of my left cheek was really irritated; I thought I had bit the inside of my cheek overnight but it kept getting worse and on Sunday I realized it had to be the tray.  I switched back to the previous tray but it took all week for it to heal.  Yesterday, was the first day that I could eat without first numbing the area with Orajel.  That's how bad it was.  It hurt to eat and it hurt to sleep on my left side (my usual position) and rest my cheek on the pillow.  Sleeping on my right side made my right shoulder hurt; I was a disaster this week and I felt like it. 

The worst days were Wednesday and Thursday; I feel like I was holding it together until then.  On Wednesday, I just hit a wall and I also got the chills and started feeling achy around dinner time.  I did check and my temperature was normal.  I took some Tylenol and felt fine the next morning.  This happened on Thursday and Friday evening too.  My temperature was a degree above my normal on Thursday night but I never ran a fever.  Both of these times, two Tylenol was all it took and I was fine in the morning.  My cheek had healed up enough by Thursday night that I could sleep mostly normally, I got a pretty good amount of sleep on Thursday and Friday nights so I felt a little more like myself on Friday.

I was told by one of the nurses at the infusion center that it would take me longer to heal and suggested I use antibiotic ointment on cuts.  Apparently, it also makes you more sensitive to irritation too.  I've been doing Invisalign for just over a year.  I've had trays that irritated my mouth before but not like this.  I checked the tray and didn't see anything obvious that would have caused that.  It also seemed to take longer to heal then it should have.

The energy dips are to be expected but is made worse by not getting enough sleep.  I need to find a balance when they happen.  I tend to do the basic "mom" things that I need to do when they happen and I don't do the "taking care of myself" things.  I barely did any yoga, I wasn't making myself celery juice or smoothies, I wasn't drinking as much water (although I wasn't dehydrated), I wasn't writing in my journal and I wasn't even getting in the shower everyday.  Clearly, some of those things I need for my physical and mental health.  My mind goes to "what do I have to do" to get through this day and unfortunately, those things don't make the have-to list.

My relapse seems to have mostly passed.  I noticed on Friday morning that my legs were back to normal; that could have happened sooner but I didn't notice.  My finger tips are still a little bit numb. I did some reading and it is common for old relapses to come up.  It's the new ones that they look for to track progress.  Also, this is the first of a two step treatment so it wouldn't be unheard of to have new progression this year but it is hoped that it is slowed down.

I had my blood drawn on Friday.  I'll get results tomorrow (Monday).  I'll do a quick update on how that goes.  Some people post their blood results.  I don't know why anyone would really care but maybe I'll post it as a 'page' in case anyone really wants to see the numbers.

Week 3 - The Big Crash

Week 3 - Post Lemtrada

November 10, 2019

We knew it was coming and it's here...the Big Steroid Crash.  I could tell it was coming last weekend. My energy level had been dropping throughout the week and by last weekend it was pretty low.  I still wasn't sleeping well and with the steroids wearing off, I had nothing to boost my energy and get me through the day.  I was tired all day on Sunday of last week.  On Monday I worked outside a little bit, I spray cleaned some of the windows on the house (in the back and side of the house), by the time I came in and took a shower, I was completely drained that was all I had in me.  By Tuesday, I could tell my mood was down in the dumps with my energy level.  It's kind of depressing itself;  I was getting used to being in a better mood.  I was easily irritated this week too.  I got mad at my husband for sitting in the recliner because I had been sitting there (before he came home) and I was pissed off on Tuesday when I had two people ring the door bell while I was doing my therapist session.  I only had something going on for 1-50 minute block of time all day and folks chose that time to come ring my doorbell plus the dog was whining to go out then to come back in.  It was also annoying me that I was starting out the week doing a bunch of shit I didn't want to be doing.  I had planned to be bored and take care of things I've been meaning to do around the house and it's just been a parade of people coming through the house the last two weeks to fix things.  I just want to yell "leave me alone!".  On Wednesday, I burned some sage. 💆🕯

My sleep still hasn't gone back to normal which is not helping my mood/irritation level.  I stopped taking the Tryptophan; Monday night was the last time I took any kind of sleep aid except for Friday night (I took it at 2am because I wasn't able to fall asleep).  Except for Friday night, I've been falling asleep pretty quickly but I still generally wake up in the middle of the night to go to the bathroom and have been waking up early.  Some mornings earlier then others.  Because I don't have the steroids in my system anymore to boost my energy level, I've been dragging during the day.  I ended up taking a 3-hour nap on Friday; I was still tired so I didn't think I would have trouble falling asleep at night but I did.  That's why I ended up taking the Tryptophan; I fell asleep within 30 minutes after I took it.  By Saturday night, I was drained completely...it was either the lack of good sleep all week and/or the turkey we had for dinner but I passed out on the couch around 8:30.  I slept until 11 and was kind of awake for about an hour before I headed to bed.  I slept until 6:30, used the bathroom, went back to sleep and struggled to open my eyes at 8.  I slept over 10 hours and still struggled to open my eyes.  I think this is my crash #2 where my body finally starts catching up on the sleep I lost.  

I started taking my Vyvanse again on Sunday.  I had been thinking about it for a few days and when I got up on Sunday still so tired; I decided it was time.  It definitely helped get me through the day and boosted my mood a bit as well.

The other thing going on is a relapse.  On Tuesday morning, I got up in the middle of the night and had to stop for about 30 seconds before my legs wanted to go again.  The technical term is spasticity but I call it bouncy.  How it shows up for me is that when I first get up in the morning, I need to pause while my legs bounce under me for a bit then I go about my day.  It's only ever first thing in the morning.  I think it started sometime in 2016; I also always get finger tip numbness along with my legs.  The finger tip numbness started in mid-2014; we actually thought it might be carpal tunnel.  My neurologist had me wear a wrist brace for a bit.  Obviously, at some point I realized it was coming and going.  I started a symptom tracker spreadsheet in 2013 but I am not always good at recording everything especially when it's a 'same 'ol relapse'.  They kind of come and go and you don't notice as much.  Lately, the bouncy legs and numb fingertips have been a precursor to numbness or some other relapse.  So far nothing else has shown up and I don't have that buzzy feeling in my spine when I stretch my chin to my chest.  That is usually another sign that something is coming on.  It's a little disappointing that I am having a relapse so soon post-Lemtrada especially after being on so many steroids.  Tuesday morning was the worst of it though.  It made me realize I had been having that sensation for a few days before and since then I've had it every morning but more mildly.  The finger tip numbness has been pretty constant.    

I've been doing what I can to take better care of myself.  I had a good virtual private yoga session with my yoga teacher this week.  We worked on building a practice that will promote healing of my lower back and support my MS.  I've been trying to do my practice every morning.  Some days, I just get up and go or I lay back down for a while and by the end of the day I still haven't gotten to it.  That's my typical MO and I think most moms could say the same; we put everything as a higher priority then taking care of ourselves. I started making smoothies again, making sure that I wash or rinse everything including the frozen berries.  I also started making/drinking celery juice. Again, making sure everything is cleaned first.  Celery juice first thing in the morning on an empty stomach is really good for you.  The natural salts help to balance your pH and your stomach acid, it's hydrating and flushes toxins.  The first couple weeks after my infusion, I just wasn't sure what to eat and was being overly careful.  This week, I am still being careful but have loosened up a bit.  I need more fruits and vegetables in my diet if I want to stay healthy. Before my infusion, I bought myself some locally made bone broth.  It's also very healing and I wanted to drink it in the mornings especially since I am not able to have herbal tea right now.  I used to buy it occasionally but buying it more regularly gets expensive fast so I bought myself an Instant Pot and I am going to make it myself.  I made chicken noodle soup with a whole  chicken on Saturday and it turned out great.  I am going to try making the bone broth next week.

I am up way too late so this is going to be all for this week.
P.S. - I will be going to the lab next week for the first of my monthly lab work and I'll get results at my neurology visit on the 18th.
P.P.S - This will be my last format change. 😉

My Basic Smoothie Recipe:
1.5 cups frozen mixed berries
1 cup coconut water
1 small container dairy free yogurt (I usually use coconut milk plain or vanilla)
0.5 of an avocado
a handful of baby spinach
1 tsp of Dulse flakes or the contents of one Kelp capsule
~ a tbsp of honey (not using honey at the moment due to potential bacteria)

Instructions for bone broth that my friend forwarded to me:
https://40aprons.com/instant-pot-bone-broth-gels-whole30/#wprm-recipe-container-13917

Recipe for the Chicken Noodle Soup I made:
https://recipes.instantpot.com/recipe/chicken-noodle-soup/

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.