Wednesday, July 31, 2013

I feel Tecifidera drug is working for sure. Here's a few Tecifidera tips to make it easier for you. This is my first diary about my journey with Tecifidera. I want to kiss my doctor; this is so smart to do this.

Jeannine Everett, Tecifidera Editor, MSnewsChannel.com

This is my first diary of my journey about this new drug: Tecifidera.  I started it in the beginning of July but due to an allergic reaction I had to stop.  Most doctors don’t understand that I am allergic to Benadryl (yes this is true), so now I just started again on July 26, 2013.  This is my first week at 120mg.  I will be taking this dose for a month before I begin to take the 240mg dose.  I want to kiss my doctor! This is so smart to do this.  I know this drug is expensive but I feel more!  I feel this drug is working for sure.  It has many side effects that deal with your stomach so my first tip is to take Pepcid with your pill in the morning while eating something; I mean really eating something not just a nibble.  I have found that eating a big breakfast really helps the stomach cramps that you get while taking this drug.  Also avoid eating spicy foods..comfortable with this way of thinking.

Monday, July 29, 2013

MY Tecfidera update PLUS: WHERE MY JOURNEY BEGAN by Judi Kazakawich, Tecdifera Columnist, MSnewsChannel.com

I live in northern Alberta, Canada and just like everyone else I was trying to make a career for myself. I was working at the hospital as a health record technician. Met my husband Vic in 1979, we married in 1982 and the bombshell came crashing down on December 17, 1985. I'll never forget that "life changing" day! I had been noticing numbness in my toes and fingers. This kept coming and going. Saw the doctor and he said (because I'd been overweight) oh your probably dieting too much, not eating well. He could think whatever he wanted I knew something was not right.
After some time I got referred to a hospital in B.C.  I was admitted to hospital for one week and many tests were done.  The spinal tap (YUCK) was the test confirming my diagnosis. Remember there were no MRI 's back then.
Devastated and scared because I'd never heard about M.S. before we came home and started a whole new life.

We managed best we could as there was no "m.s. drugs out then. I was working full time and things were good so in 1988 our daughter was born 7 1/2 weeks pre-maturely. You know me couldn't do anything the easy way 😜.  Then another daughter in 1992. We are a close knit family so I had help whenever I needed. But physically could only work until 1985.

Okay so now I'm home on disability and not wanting to leave the house for fear of what people were saying. She's not sick she looks fine, why should she be on disability.  This ate away at me, it was months before I felt comfortable leaving the house. I would think to myself - no don't do your hair and put make up on, that will make them think there's really nothing wrong with me.

Bu you know what they have no idea about the nights I sat on the edge of the bed crying for 2-3 hours because my arms ached or my legs were jumping. Or when I couldn't walk because of optic neuritis, or just couldn't sleep. They had no fricken idea.

My doctor told me to go on disability. He said go home and enjoy your family, do what you can while you can because if you end up in a wheelchair and can't enjoy your family - the hospital isn't going give a damn about you - they probably won't even remember who you are!

So that's how I live my life. I enjoy every day as much as I can. Some days not much at and other days are amazing!

M.S. May have changed the way I do things but I still get them done 😘💕💕

Tecfidera update:



I started tecfidera on July 3 and I'm still doing amazing. No more side effects. I have noticed my brain fog has definitely been less. I still have some brain-farts when I know what I want to say but the right words just don't come out. But hey I know people who don't have m.s. that have this trouble.

Also I've noticed I hardly fall at all. My family notice that I'm much steadier when walking. This has been so good because when I'm doing better for sure I'm not getting as depressed as I used to.

Probably the biggest improvement for me has been in my sleep. I sleep through the night and wake up so rested, I love it.

Hope other angels on tecfidera are noticing some positive changes.

Prayers and love to all angels. See you next week 💕💕

Sent from my iPad


Sunday, July 28, 2013

HERE'S MY TECFIDERA UPDATE

Judy Kazakawich, Tecdifera Columnist, MSnewsChannel.com


I started tecfidera on July 3 and I'm still doing amazing. No more side effects. I have noticed my brain fog has definitely been less. I still have some brain-farts when I know what I want to say but the right words just don't come out.


But hey I know people who don't have m.s. that have this trouble.

Also I've noticed I hardly fall at all. My family notice that I'm much steadier when walking. This has been so good because when I'm doing better for sure I'm not getting as depressed as I used to.

Probably the biggest improvement for me has been in my sleep. I sleep through the night and wake up so rested, I love it.

Hope other angels on tecfidera are noticing some positive changes.

Prayers and love to all angels. See you next week 💕💕

We are remodeling this Tecfidera News Channel & the other 11 MS Drug Treatment Channels at the top of our Home Page!

  ALL 12 MS DRUG CHANNELS WILL BE COMPLETED ON OR BEFORE SEPTEMBER 1ST!    

Plus: Pardon our construction while we add Columnists to the MS News Channel for the 1st time!  


                                                                                                                           

Thursday, July 18, 2013

Wednesday, July 17, 2013

I'm switching from Avonex to oral Tecfidera



I am more than happy to "kiss" these stupid syringes goodbye.

I'm seeing my Neurologist today and he's switching me to oral Tecfidera!

I feel like I've been waiting forever for this.

Sunday, July 7, 2013

MY PHARMACEUTICAL HEAVEN: I'VE TRIED AVONEX, REBIF, BETASERON, COPAXONE, IVIG & NOW I'M GOING ON TECFEDRA

Being diagnosed with Multiple Sclerosis is scary enough, but when they start offering all these medicine options at you and the side effects, it can be somewhat overwhelming! What you have to keep in mind is everyone is different and your body chemistry is going to be different than “Susan’s” body chemistry. Your stage of MS may or may not be the same as “Phil’s” stage so obviously you are going to react differently to the drug. What you can rely on 100%, and its full proof is experience. Every MS’r has a treatment journey. If you listen to that journey cautiously and only take the experience from it, it may help you in deciding which direction you want to go in your own treatment. So I want to share my journey with you in
hopes you may or may not take something away from it. When I was diagnosed, I had no idea what MS was or what it could or would do to my body. Like any scared 44yr old, single, professional, “made it on my own” female, I Googled it. BIG mistake! Holy crap! Talk about terrified. I needed to plan my funeral, update my will, and have a family meeting.  *Note to self- No more computer research!
I saw every awful thing there was to see, every horrid image, every side effect from every medication, but what I didn’t see was a cure. Talk about scared! I went to Barnes & Noble and spent money I should’ve spent on new shoes on books about MS.

My neuro decided to put me on Avonex and I reluctantly obeyed. I will never forget that first shot. I had my best friend with me for support and she had a bottle of Tequila for her support because she hated needles. She completely passed out when I took out the package of instructions. What a champ. I would take the shot on Friday night around 6pm and the side effects would start sometime in the early morning hours around 1-2am. I literally laid in bed all day Saturday & Sunday feeling as if a truck had hit me.

I was single then and had zero support from family. I remember one of them asking “Why are you doing this to yourself?” Oh I don’t know, I like feeling like I’m about to die? I had literally no one!! I was in this fight all by myself. I was still working then too. So I would drag myself up and out of bed on Monday, drag is the correct word, go into work, sleep thru lunch, go home, sleep, do it again Tuesday, by Wednesday I was feeling almost human again. Thursday was my “Good” day except that’s the day depression would creep in because I knew I had 24 hours until the cycle began again. It was horrible. I did this for almost a year. 

I was suicidal as you can imagine and was feeling no better physically. I was hearing all kind of negativity from family members, nothing positive. I felt like I was alone in the desert with no rain or water in sight. It was the most miserable year of my life! Now keep in mind. THIS IS MY EXPERIENCE!! Everyone doesn’t re-act the same to this drug! There are people who do very well on it and have for years. That’s the thing with the MonSter. It affects us all so differently. If we were all affected the same it would be easier to cure the beast!

So I call my beloved Dr. told her of my dilemma and she immediately changed me to another interferon Rebif. I tried that for three months then Betaseron, also a no go. So we determined interferons and my chemistry weren’t a mix. I then went to Copaxone, an everyday injection. That worked well for over a year until I had an allergic reaction to it.

Trust me, you may think that little EPI pen that comes in your pack of goodies is for show and tell, but know where it is at all times when you are injecting a substance into your body that isn’t normally there. Had I not had it that day I truly believe I would have gone into anaphylactic shock and quite possibly died. Apparently I had built up immunity to Copaxone so it quit working and my body all of a sudden rejected it, no warning, no flashing yellow lights, no buzzers, nothing! Just the swelling of my tongue and the closing up of my throat and I heard the fat lady singing!

Thank God for my Epi Pen and 911 obviously. After that incident, I wasn’t sure what options were even available for me. I thought I had tried them all. I had heard of a treatment called IVIG or Intravenous Immunoglobulin not yet approved for MS but was being used and experimented on people with MS. I asked my neuro about it and she told me the risks, the costs which where astronomical, and said if I wanted to try it she could get it approved through some clinical study. Well by this time I was ready to try anything. This was November 2010 and I spent a week in the hospital because my body didn’t like it either. I decided to go la-natural since that time other than the occasional IVSM that I have to have for the flares and of course the meds I take for fatigue, sleep, pain, etc. I had decided until they came out with a cure, a real cure, I was going to be “super-girl” and weather the storm.

Well that was three years ago and we aren’t any closer to a cure then as we are now but we do have several new meds on the market, Tecfedra being the one next in line for me I think.

I know I am progressing and I truly want to believe there’s a drug out there that will help slow down this MonSter. Until we try them we won’t know. So In a couple months, maybe sooner, I will embark on the Tecfedra journey.

I’m hoping to bring you day by day, week by week non-candy coated updates on this new and hopeful gate to our future.  LOOK FOR MY TECFEDRA UPDATES HERE ON STANS ANGELS OR IN MY COLUMN ON: www.MSnewsChannel.com

We shall see.

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