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| sturdyteam at the 2011 MS Walk |
Showing posts with label Rebif. Show all posts
Showing posts with label Rebif. Show all posts
Thursday, April 12, 2012
sturdyteam registered for MS Walk 2012
Labels:
Ancestral Health,
Copaxone,
current events,
diet,
disease modifying drugs,
DMD,
DMDs,
family,
Glatiramer acetate,
interferon,
lifestyle,
MS,
MS Walk,
multiple sclerosis,
Paleo,
Primal,
Rebif,
RRMS,
walking
Tuesday, January 3, 2012
sturdyrant: Getting a hate on for needles
I don't know whether this will be a recurring series of "rant" posts, but I am sure my wife, colleagues, friends, and neighbours will be happy to see me channelling my energy into writing blog posts that they can choose to ignore rather than me bending their ear for an indeterminate amount of time about things that irk me. The point of the post below is just that, a rant, and is my opinion alone, and not that of my employer, or of anyone else of importance. Just me. It is also not meant to serve as a "pity party". Just a rant. Pure venting.
I have been on a so-called "Disease Modifying Drug" (or DMD) since June 2009. I can safely say that any infinitesimal amount novelty that may have existed around the idea of injecting myself 3 (first DMD: Rebif) and then 7 times a week (current DMD: Copaxone) has long since vanished. Lately, I've been getting a healthy hate on for needles and the nightly "routine".
Don't get me wrong, the current drug appears to be "working" (or is it my Whals-esque paleo style diet and lifestyle?) at preventing relapses, and maybe even reducing the number and size of lesions in my brain observed on a 4.7T (strong) MRI, but finding spots to "stick" it is becoming increasingly difficult. (This is at least a step up from the awful, flu-like side effects I had with the interferon and that it kicked the snot out of my bone marrow. I eventually dropped it after two failed "attempts".) Not to mention that I think I may be developing a spot of lipoatrophy on my abdomen as a result of the injections. (It's interesting to note that lipoatrophy caused by Copaxone is one of only two listed causes on the Wiki page, the other being caused by an adverse reaction to medication for HIV/AIDS.) I am not certain about the lipoatrophy, but it is worrisome. Besides appearing unsightly, lipoatrophy causes you to be unable to continue to inject in the affected location. If this happens enough and in enough locations, you may not be able to continue to self-administer your Copaxone. And here's the rub.
You need to maintain a "healthy" layer of adipose tissue to facilitate injecting Copaxone (a product that costs my insurance company almost $17,000 per year, by the way). No fat, or damaged fat, and no injections. Forget being healthy any avoiding all the other ills that can still befall an MSer (such as heart disease, stroke, type 2 diabetes, etc.) or the fact the the food you used to eat that made you chubby (and a good candidate for injections!) also very likely contributed in a real way (i.e., caused) your MS in the first place. No, don't worry about that. Just be sure to have a little extra junk in the trunk to pump the medication into each day.
In closing, I must add that my nurse, an RN who contacts me periodically to ensure that things are going well and to offer advice, has been excellent. This post has nothing to do with her. I am just choked in general about the situation that is fraught with contradictions.
I have been on a so-called "Disease Modifying Drug" (or DMD) since June 2009. I can safely say that any infinitesimal amount novelty that may have existed around the idea of injecting myself 3 (first DMD: Rebif) and then 7 times a week (current DMD: Copaxone) has long since vanished. Lately, I've been getting a healthy hate on for needles and the nightly "routine".
Don't get me wrong, the current drug appears to be "working" (or is it my Whals-esque paleo style diet and lifestyle?) at preventing relapses, and maybe even reducing the number and size of lesions in my brain observed on a 4.7T (strong) MRI, but finding spots to "stick" it is becoming increasingly difficult. (This is at least a step up from the awful, flu-like side effects I had with the interferon and that it kicked the snot out of my bone marrow. I eventually dropped it after two failed "attempts".) Not to mention that I think I may be developing a spot of lipoatrophy on my abdomen as a result of the injections. (It's interesting to note that lipoatrophy caused by Copaxone is one of only two listed causes on the Wiki page, the other being caused by an adverse reaction to medication for HIV/AIDS.) I am not certain about the lipoatrophy, but it is worrisome. Besides appearing unsightly, lipoatrophy causes you to be unable to continue to inject in the affected location. If this happens enough and in enough locations, you may not be able to continue to self-administer your Copaxone. And here's the rub.
You need to maintain a "healthy" layer of adipose tissue to facilitate injecting Copaxone (a product that costs my insurance company almost $17,000 per year, by the way). No fat, or damaged fat, and no injections. Forget being healthy any avoiding all the other ills that can still befall an MSer (such as heart disease, stroke, type 2 diabetes, etc.) or the fact the the food you used to eat that made you chubby (and a good candidate for injections!) also very likely contributed in a real way (i.e., caused) your MS in the first place. No, don't worry about that. Just be sure to have a little extra junk in the trunk to pump the medication into each day.
In closing, I must add that my nurse, an RN who contacts me periodically to ensure that things are going well and to offer advice, has been excellent. This post has nothing to do with her. I am just choked in general about the situation that is fraught with contradictions.
Tuesday, March 15, 2011
sturdyteam registered for the MS Walk 2011!
sturdyteam at the 2011 St. Albert Enerflex MS Walk
It is time to start building an increased awareness of multiple sclerosis and to start fundraising again as the 2011 MS Walk is only 2 months away (15 May 2011). This year, we are participating in the Edmonton Enerflex MS Walk instead of the St. Albert MS Walk because of conflicts with the girls' dancing schedules. Like last year, we'll be doing the 10 km walk. Please click here to donate to sturdyteam or our individual members.
I was diagnosed with relapsing remitting multiple sclerosis in May 2009. I am currently taking Copaxone, a standard MS disease modifying drug (DMD), via daily injections. Before this I was on Rebif for two stints, but it caused nasty side effects so I moved over to Copaxone (Glatiramer acetate is its generic name - Copaxone is the trade name used by Teva Pharmaceuticals).
Although there are many new therapies being researched and introduced all the time (here's a new pill-based therapy introduced in Canada just two days ago), my goal/hope is that research will be directed towards uncovering what causes MS so that people can avoid "modifying their disease" through DMDs and instead live a long, healthy life, free of MS. Here is an example of the direction I think we need to be pursuing more vigorously, especially the dietary suggestions that are in line with a Paleolithic diet (and related to a recent blog post of mine).
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