A Reminder to Always do Your Research

“To know what you know and what you do not know, that is true knowledge.”

–  Confucius

Another exciting health journey going on in my life right now.  I just officially found out today that I have shingles.  Really?  I am 45 years old so how can I have shingles?  I’ll take you on a journey through the last four days of my life.  Not to share the gross details, but to let you know what to look out for and make sure you do your own research before starting on any medications.  I know a lot of people who follow my site have MS and might benefit from this information.

1. Thursday:  felt a burning feeling on my right torso.  Having MS and many sensory issues, this was not that abnormal.  As the day went on, it became more intense.  I also had a crazy headache which is abnormal for me.  I had my husband take a look to see if he could see a burn.  He could not but said it looked a bit like I was going to get a bruise.  Not uncommon for me as I frequently bang into things without realizing.
2. Friday: woke up and felt bumps on my torso.  Looked in the mirror and saw what looked like a rash in the spot that had felt like a burn the day before.  Red around the spots.  Was really itchy but not as much of a sense of burning.  As the day went on, got itchier.  Tried not to scratch.  Talked to a friend who apparently had had shingles before who asked if maybe that is what I had.  Shingles?  I hadn’t even thought about that.  She said if that is what it was, I would get blistering in that spot in a day or so.
3. Saturday:  woke up to major pain and itching on that same spot.  Looked again and more bumps in a bigger area and some looked like they were “filling up”  (eww) with something.  Pain travelling from the bumps around the side of my torso to my back.  No bumps there just pain.  Chills all day and a slight fever.  Also, stomach issues.  Not normal for me.
4. Sunday:  more pain and more pronounced bumps with fluid,  Called my pharmacist seeing as I couldn’t see or talk to my doctor until Monday.  She was great.  Told her my story I just told you.  She said I definitely have shingles.  She told me she would prescibe an anti-viral drug for me that should ease symptoms and make healing happen faster.  Filled the prescription within an hour.

There is more to this story.  On Saturday, I posted on a Canadian site for people on the drug that I have been on the last three years.  It is called Ocrevus and is an infusion that I get twice a year.  I just had my most recent infusion 2 weeks ago.  I asked if anyone had developed shingles since starting on the drug.  So many people started replying saying of course they hadn’t because they had had to get the shingles vaccine prior to starting on Ocrevus.  What?  I always research things and had not heard that at all.  Before I started on it, I needed to get a whole bunch of vaccines.  I got the pneumonia vaccine, a booster for rubella and measles, the flu vaccine and was tested for TB and hepatitis.  I remember asking about the shingles vaccine and was told that being 42, I was not old enough to get it yet.  Apparently, I was too young to get the vaccine but not too young to get shingles.

That is when I started to do my own research.  I found out that people on Ocrevus have an increased chance of contracting shingles.  Up to 1 in 10 people on the drug can develop shingles.  That is pretty high to me.  Also, before I get my infusion (8 so far) they give you a dose of steroids.  Steroids also put you at increased risk of developing shingles.  Perfect storm for my poor body to develop this infection.  I have seen some friends recently.  I was worried that I could have unwilling passed this on to them.  I found out some information that makes me feel at ease.

• you are only contagious while there is fluid in your blisters (yuck) and only if said fluid gets on to the other person.
• if you have already had chickenpox, you cannot catch it from me
• once the blisters scab, you are no longer contagious

I haven’t seen anyone since last week which makes me feel much better.  Other than my husband who of course has never had chickenpox.  He will be going to get his vaccine soon.

The moral of the story is, always do your own thorough research before starting medication.  If I had pushed for the vaccine, I could have prevented the immense discomfort that I am currently in.  Now that I have shingles, I cannot get the vaccine for a year.  Hopefully, it does not come back in that year.   The reason I wrote this post, is because I feel knowledge is power.  Hopefully, this can save someone from dealing with this discomfort.

In the meantime, a friend of mine recommended some shows for me to watch on Netflix seeing as it is more comfortable for me to lay down than sit up right now.  One is a documentary about Joan Didion called The Center Will not Hold.  I had not heard of her before, but now I am fascinated with her.  She is a writer and journalist.  The other is a series that I am enjoying.  Seeing as we cannot travel right now, it is a travel/food show.  It is called Somebody Feed Phil.  He travels around the world experiencing the culture and cuisine.  Super interesting.  Both of them are on Netflix.  Thank you Kathy for the recommendations.

I am going to spend the day trying not to scratch and laying down.

Much love,

Christine