Lets talk 'Tec', aka Tecfidera

     On March 27th, 2013 the FDA approved the latest pill for treating Multiple Sclerosis, Tecfidera.  The first two pills, both out for awhile, have not been well received by patients or doctors, and have limited use.  Most patients and clinics have been waiting for this one, seen to be very promising in trials.  It was released with a much higher rating than previously expected.  According to my personal MD, Tecfidera is better than any of the currently used self injected meds, but not quite as effective as Tysabrie, which is given IV, but has a possible lethal brain disorder as a side effect!

     Before we get into the side effects, here's some interesting trivia I learned when doing my research before taking the drug.  More than 2 million people suffer from MS,  400,000 of them from the USA, and I would swear most of them live in Utah...no kidding, the neighborhood I lived in when I was diagnosed, (two streets about 1/2 mile long with 3 cul-de-sacs) I was the 5th person to have MS.  When we moved 5 years later, there had been 3 more people diagnosed!  
     Dimethyl fumarate, the chemical form of Tecfidera, was used at one time to protect sofas and shoes from mold!  But it was discontinued, even banned in Europe, because of the skin irritation people complained about.  (uh, yeah, more on that later)
     How they determined it would be good to treat MS is beyond me, and the reason it works is not entirely clear, but it's expected to reduce relapses as much as 53%!  (the injectables are 30%)
     Biogen, the company producing Tecfidera, has not released the exact cost of treatment, it's expected to be around $50k a year, but my insurance statement put the cost at a little over $3000 a month. Of course I only have a co-pay, but for those with poor or no insurance, there may be help.  Visit the official drug site http://www.tecfidera.com for information about a $10 copay program.

     Whew!  That's a lot to take in.  But those of us who have been on the shots are so excited, because to be blunt, the shots suck!  I have been on the shot that is taken daily....let me tell you, I was running out of sites, because the golf ball sized nodules that used to go away after 3-4 days now take 2 weeks or more!  And they hurt!  Now Tecfidera, nicknamed 'Tec' in my doctors office, has some serious side effects, but none of them include any deadly possibilities! (that I know of)

     So now for fun stuff.  Actually taking the drug!  I have been on Tecfidera for 10 days.  I am currently on a titration dose over 3 weeks to get to the permanent dose of 240 mg twice a day.  My doctors warned me of some side effects, and the medication insert informed me of the same effects.  The most common side effect is flushing.  About 40% experienced this in trials, so be prepared.....you will likely get flushing.  I, however, would not call this specific side effect simply flushing, but 'The Burn!'  Then came the itching, and a rash.  There was also some GI distress, mostly heart-'Burn', some nausea, and for some, even diarrhea.  I called the first night of treatment Hell!  I did not know how severe some of these effects would be...but take heart, they are easily dealt with, and mostly short lived.

     My first night I did nothing else but take the drug and go to bed,  I woke up 45 min. later on fire!   This was not your typical flushing, nor anything like hot-flashes.  This was like having my head stuck in the microwave on high!  Then I started to itch...my earlobes, the palms of my hands, the bottom of my feet, and scratching did nothing to help.  I broke out in a rash over my chest, and my face was as red as a lobster!   I had a slight burning feeling in my stomach.  I was very concerned I was allergic, but unsure whether I could take Benadryl, I waited them out.  I did take some Tums, ate a little food, and wrapped my neck in a wet, cold towel which all made a big difference. ( I found out you can take Benadryl before or during, to assist with the itching and rash.)   After about 1/2 hour, things started to go away, and I'm not sure how long it took, but everything was totally gone by the time I fell asleep.

     The second night I took 25mg Benadryl, and ate something before I took my dose, but was so scared of the 'Burn' that it took me until 2am to finally take my bedtime meds.  I waited, and waited.....nothing.  No 'Burn', no GI distress, only slight itching on my hands. That was it!

     Night three I felt prepared and confident, I went without the Benadryl, but still ate some food.  This time there was nothing!  Since then, I have had 3 nights of some slight burn, but nothing anywhere near 'The Burn', and a few, not enough to count, episodes of itching.  I am currently taking 120 mg twice a day.  The next increase will be 2 pills at night, and I expect to have some more symptoms, but I will definitely keep you updated as to how it goes.

     Something weird I have noticed was that if I ate something very cold right after taking the drug, the 'flushing' seemed to be mild or non-existent.  Also being diabetic, I can't eat ice cream, but have a homemade experiment I call frozen yogurt, so to speak, that I eat for my night-time snack. I did not have my snack the first night of treatment, and 3 other nights, and those nights are the ones that I had more of a flushing effect!  Something to think about when your trying to deal with side effects.

Anyone with suggestions, information...comments welcome.  Questions...please ask.

Beginning again....

I have started this blog many times now, and just can't seem to be consistent.  But it's time to try again.  New events in my life have forced me to reflect again, and I find the need to share, reach out, and look for a new network of friends, support, as well as re-connect with the old network of friends and support.

I have recently been diagnosed with diabetes, adult onset, or type 2.  I have been dealing with Multiple Sclerosis since 2000.  Along with the M.S. has come Fibromyalgia, chronic pain issues, chronic depression, hormone deficiency... Losses to include job, income, friends, mobility, independence, home, sex life, body, image...need I continue?  Am I bitter...not really, not anymore.   I try to deal with each day as it comes, greeting each morning as a new opportunity to 'turn my life around', start a new project,  get dressed, shower, get out of bed, or sometimes just get to the bathroom by myself.  Every night, regardless of the success or failures of the day I try to find something positive, something I accomplished, however small it may be.

I recently started the new M.S, drug, a pill, (no more nightly shots!) and would like to document how it's been for me....the side effects can be severe...but fleeting, and then return.  I have had to teach myself how to deal and manage my diabetes, regardless of being a nurse.  I didn't treat anything chronic.  I dealt with the acute, trauma, not one patient for more than 12 hours, except for the "frequent flyers".  I have been out of nursing school for over 25 years, I don't remember those dietary care plans.  Help was hard to come by for me, I can't imagine the new diabetic in my shoes without the medical background.

I am trying to start my own small business selling the jewelry I create, and hopefully do some long-arm quilting as well.  Lofty goals, considering, but I can't just continue to sit and stare the rest of my life.  I love all things crafty, and have done just about everything a little.  I had to settle on just a few crafts to continue and let the rest be things I used to do.  Just about a year ago we moved into the first rental we've lived in for over 20 years.  I thought this would be so temporary that I have been living out of some boxes, living among a lot of boxes, not really unpacking, and still not able to find most things I go looking for.  I still have at least one box of clothes, all my dresses and skirts, that I have been unable to find.  Although I swear I have been into every box at least 3 times.

I love to share/exchange craft projects, decorating ideas, recipes, information, knowledge.  Stories of children, grand-children, pets, husbands, and families.  Good, bad or nightmares. I would like to invite you to come along for the ride, encourage your comments, welcome your help.

Please explore this journey with me, and be patient...after all I am beginning again!

Spoiler Alert:  tomorrow I will begin to chronicle my events with the new M.S. drug, Tckfidera, and it's wonderful (ha) side effects.  I'm not sure, but I think I'm on to something.......

New Year

Well, here it is, another year has gone by.  In the past I was known to set a few resolutions, mostly in my head, and usually concerning weight or my love life.  I never was very successful with those resolutions, sometimes I would get lucky and one would turn out OK, but for the most part my resolutions never amounted to much.  
Then for several years, more like decades, I have not bothered too much with them.
This year I figured out that maybe if I wrote down my resolutions they just might work better....I seem to remember being told in my younger days...'A wish unwritten is only a dream'.
So,
I wish to have a schedule that I can adhere to...for the most part.  When I feel like it.  As long as it doesn't interfere with my nap time.
I wish to increase my jewelry business. Maybe go to a bead-fest.  Go to a beading seminar.  Go out to lunch with other designers.  Buy more beads.
I wish to take better care of myself to manage my multiple sclerosis, not have it manage me.  I need to spend more time in the pool. Spend more time at the spa.  I need a pool.  I need a nap.
I wish to spend more time with my family.  Eat dinner as a family.  As long as they don't chew with their mouth's open. Or sit on my cats.  Especially if they don't spill food or drink on my bed.

Surely I jest.  That's half the fun!  It is said there is truth in joking, and there is truth behind my humor as well.  I really wish to accomplish many of the above sentiments.  And I hope that you will follow along in my journey as I face a challenging year with many changes to come.  Many hopes, wishes and dreams to come.

Be well my friends
  

Farewell, my friend

It has taken me awhile to be able to write this post, and I would rather not do it.  But I owe it to my best friend to dedicate a farewell to him.

Smokie  passed away on November 17, 2011.  I knew it was coming, he had been sick for awhile.  Still, I was not really prepared for him to go this specific day.  Smokie is a cat I rescued during one of the big pet adoptions in 1996.  He was in a cage with a big orange sign that said "senior citizen" on it.  I was drawn to him immediately. When Dennis opened the cage door, Smokie climbed out right onto his shoulder and stayed there.  We kind of chuckled, and when I stepped closer, Smokie transferred to my shoulder without hesitation.  OK, I'm a sucker.  I had been adopted.  I walked with him still on my shoulder to the checkout,  filled out the forms, and took him home.  All the volunteers were so excited that 'grandpa' had been adopted, and would be in a loving home for his 'final years'.  He was 6 years old, but had been living in a kennel for the last year waiting to be adopted. I think the 'senior' sign may have saved him for me.
Smokie was only the second cat I had adopted, and the first full grown.  My first cat, Kitty Kitty was adopted as a kitten, was 2 years old.  I didn't know how they would get along, so I put Smokie in my bedroom with food and a litter box and closed the door.  I checked on him frequently, mostly because every time I opened the door, he would be sitting on the corner of my bed as if waiting patiently for me to come back.  He would greet me with a grunt while throwing his chin up in the air.  We all thought this was so funny we would stand in the hallway and repeatedly open and close the door just to get a response.  Smokie didn't disappoint, every time that door opened he would grunt.  We learned that this was his usual method of communication.  He would meow, but that was a raspy combination of a grunt and a squawk.  Later, when his asthma set in, this raspy meow would literally sound more like a dog bark!

It didn't take long for Smokie to become my shadow.  He would follow me throughout the house, sit with me, sleep next to my head, wake me in the morning for my meds (which coincided with his morning meal), and greet me at the door when I returned home.   The adoption volunteers gave us the idea that he would not live for vary long, since he was 'old ya know'.  We had a hard time believing he was 'old' since he pulled off some pretty amazing feats.  He jumped out of a second story window (twice),  climbed onto everyone, and anything, but most endearing was when he felt the dog (Hunter was 100# lab) was giving me a hard time, he would literally beat up the dog.  He didn't leave scratch marks, or hurt Hunter, but he would run up and pummel him with his paws enough to make Hunter cower in the corner!  Hunter would never look directly at Smokie.  In fact, when he entered the room, Hunter would obviously look the other way, but only with his eyes.  At times, this was very comical!  The cats would frequently seek out warm spots in the house to sleep, only to find the next day someone else had stolen their spot.  No one ever tried to steal Smokie's place next to my head, or the seat next to me.  It's as if they knew what he was capable of if they got caught!
Smokie was with us for 15 years.  He was 21 years when he had to be put to sleep.  His little body had lost several pounds, his kidneys had given up, and you could just tell it was time.  Yet I knew he didn't want to go. I just knew he would stay by my side as long as his body would hold out, and never regret any day he could spend with me, no matter how miserable he might have been.  During that last ride to the vet he clung to me so tight, as if somehow knowing.  Of course I cried the whole time.

Now his spots are empty most of the time.  My other cats are slowly starting to sit next to me for short periods of time, but no one tries the space on my bed next to my pillow, and I think it probably will remain that way.  His spot in my heart, however, will never be empty, as he will always be with me there.