Tecfidera: conquering the side effects. Notables. And the shoes of the Boston marathon runners?

     So I am at the end of week 2 out of 4 of my dose titration of Tecfidera.  And to my ecstatic surprise, the last 3 nights I have not eaten anything concurrent to taking my dose, and have not only not suffered any itching, but have not had even an inkling of any warmth, let alone the flashes.  I am so excited that it really is true, the side effects do lessen as time goes.    So now, I am not so worried about tonight's increase to 2 pills, or 240 mg giving me a flash similar to the first dose or the first increase.  Although, nothing has come anywhere near the flash I got the first night!  And I am baffled as to why the night time dose results in significantly more side effects than the morning dose.
    But as I progress through the next two weeks, I will be updating regularly, and almost exclusively until I am at the full dose...

     Then, we will start to have more fun here.  I need to get some of my jewelry projects going, recipes, DIY projects, and a little diabetic talk, but this Tecfidera is such big news, I felt it deserved priority for now.

     Hang in there....good times will come.  I even have plans for drawings for jewelry, craft books, craft items, group projects...  So share this blog with others, cause a drawing, or group project is no fun with just me!

     Other random notables for Friday:  My grandson, 13 mos., is now walking!  Yeah, and oh no all at the same time.  It's so fun to watch, but now he can reach more things cause he can see them better......yikes!  Time for some more baby proofing!

     I was a very bad girl, and ate a piece of pie each day for the last 2 days.  I know, I know....no no.  Don't tell my doctor.  But, I guess because I am eating very healthy the rest of the time, and it takes me about 2 hours to get through just that one piece,  it has had absolutely no effect on my blood sugar!  I am really surprised.  I thought it would hit me harder.  This doesn't mean I will do this often.  In fact, this is a rare occurrence.  It has to be.  The sugar addict in me will take over, and the next thing I will be back to my old junk food/sugar habits.

     Question:  What do you think?  Is it OK to indulge every once in awhile?  Or should one maintain their dietary restrictions?   Do I confess to my doctor?  My blood sugars stayed at 90's and the most 100.  I suspect some of this is because I am obviously not a brittle diabetic.  In fact having only been diagnosed 4 months ago, and being right on the edge to begin with, I think just cutting the sugars, and controlling my carbs has made a huge impact on my levels overall.

     Now, if I could just lose some weight!

     I found this great recipe for a fun summer 3 bean salad that I have converted to sugar free.  It includes my fav's: edamame and black beans with green beans.  I am threatening to add chicken to it the next time I make it!  I will get the ingredient amounts and get it posted here very soon,

     Lastly, I last night while online, I was my next wall decoration project:  Boston Magazine  (http://www.bostonmagazine.com/ ) created a large heart from the shoes of the Boston Marathon runners.  In the center of the heart it reads:  "We will finish the race".   I was very moved by this tribute, and very excited to read in the article that they are planning to release it it poster form, with the proceeds going to charity.  That is a poster I plan to not only buy, and frame, but put on my wall!  Inside the magazine will be several interviews of runners with pictures of their shoes.  Today News wrote an excellent article about this, along with a picture of the magazine cover!  http://www.today.com/news/boston-magazines-heart-shaped-shoes-honor-city-victims-6C9601866

     Be well my friends.

     I leave you with a copy of that magazine cover...

Ready to die for homemade frozen yogurt?

     So I think I have discovered a secret for getting through the side effects of the Tecfidera, especially at night when the side effects seem to be worse.  Since I am also diabetic, I can't eat traditional ice cream, or else that's probably what I would try instead...who wouldn't?  But since there is not much to be said for the sugar free ice creams on the market, I tried this instead. 

 A couple of years ago, while visiting with a friend of mine, her husband brought me a mug with some Greek yogurt in it asking if I wanted some.  It was vanilla flavored, and they were adding cherries and strawberries.  Simple, and delicious!  Since then I have altered their recipe, so to speak, and this is what I have come up with!  I think it's to die for, and,  if my husband knows I have some,  he comes snooping around in order to sneak some of mine!  Sometimes I will take pity on him and make extra so I can share.

I make this one serving/batch at a time...I don't measure, just eyeball it, so these are approximate measurements.  Figure out what works for you!  Also, I have tried to substitute regular yogurt for the Greek and it just doesn't work or taste the same.

3/4 - 1 cup plain Greek yogurt

1/8 -1/4 cup sugar free Cool Whip thawed

2 packets of Splenda    (can adjust to taste for more or less)

1 tsp vanilla

Stir the above together until creamy and smooth. 

Add frozen fruit of your taste about 1 1/2 cups total.  I use:

2-3 Tbs frozen pomegranate seeds

4-5 frozen,  pitted Bing cherries

3/4 - 1 cup no sugar added frozen triple berry mix (blueberries, raspberries, blackberries) from Sam's Club.

Mix together immediately, but then let set for a few minutes.  Re-stir, and enjoy!

Be well my friends.

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.......