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.