sturdyteam registered for MS Walk 2012

sturdyteam at the 2011 MS Walk

We are once again completing the MS Walk (in Edmonton again this year) to raise awareness of and funds for MS research and related programs. As many (most, all?) know, I was diagnosed with relapsing remitting multiple sclerosis in 2009. The disease initially affected my vision and balance. I have been on 2 different medications in the past almost 3 years, Rebif and now Copaxone. (both are injectable - I have written about this before). I have also completely overhauled my diet, fitness, and lifestyle. I won't bore you with the details, but many of the links on the side of my blog lead to other sites that are in line with my changes. Things have been going very well with only small bumps in the road (mostly from the medications themselves). I do not know for certain how much of this is due to the medications, other significant lifestyle changes I have made, or just luck. I guess it doesn't really matter in the grand scheme of things. Nothing sounds sweeter than people telling me that "they had no idea" that I had MS. I hope to keep it this way. Please consider sponsoring us and supporting this worthwhile cause. 

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.

One way, or another

I started taking Rebif (interferon beta-1a) as a disease modifying drug (DMD) for treatment of my MS in July 2009. Injecting myself thrice weekly was no joy, but then again neither is the prospect of MS progression, so I learned to work it into my routine. Unfortunately, Rebif and I did not agree with one another. I came off Rebif in late November, and then back on it again in January 2010. That lasted only until about the end of March when I came off it for the second time, again because my lab work showed that Rebif was affecting my bone marrow and blood counts.

At this point my neurologist suggested I switch over to Copaxone (Glatiramer acetate) because it is not associated with the same side effects as Rebif (fever, aches, chills, headaches) and because it doesn't typically affect the same things that the interferon was affecting in my lab work. The downside, of course (there always is a downside) is that you need to inject Copaxone every day, not three times per week like Rebif, and Copaxone can cause skin irritation, lipoatraphy (damage to subcutaneous fat so that you develop "pits" in your skin) and it can cause muscle spasms if injected into or too close to a muscle.

I have had few to no skin issues so far, but this may happen in time. On the other hand the muscle spasms have been an issue when injecting my legs and arms because I have almost no fat to inject into (contrary to the training nurse who visited me a week and a half ago who claimed I could use an 8 mm injection depth on all sites - wrongo!). Using the automatic injector (autoject) in my legs and arms also turns out to be a nonstarter and part of the problem because controlling the depth of the injection is tricky. When the spasms start, your muscle dances as if it were hooked to a car battery and feels as if the meanest, biggest guy you know just gave you a charleyhorse. Then  did it again just for fun. The stiffness lasts through the next day.

The support nurse from Shared Solutions (who is very helpful) suggested that I manually inject at a 45 degree angle into my arms and legs to avoid the spasm issue. Two nights ago the injection into my arm was much better done manually than the previous night with the autoject, and involved much less swearing post injection. Other than some burning, all was basically fine. The manual leg injection last night was another story. I did not manage to get it into the tissue at 45 and the muscle was jumping before even half way into the injection. My SO couldn't watch it was so intense. Rah! I sent an e-mail to my support nurse and she suggested to dump using the legs and to use my abdomen as two areas to give me a total of 6 areas (abdomen X 2, butt X 2, arms X 2). Good call.