Sunday, February 7, 2010


A 50mg tablet of prednisone compared to 10mg

My one hand contains 25 x 50mg pills that I down in one sitting

This is why I need a jug of chocolate milk to get them all down,you can't imagine how awful this drug tastes!

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I finally started my prednisone prescription on Friday, turned out to be a long and difficult day at times but finished off great. The MS clinic always wants a urine test done before starting on the dose of steroids to check for infections. Sometimes an infection can mimic signs of an MS attack so they don’t want to pump you up on steroids when it could just be an infection. I had the clinic fax the prescription to my pharmacy and the requisition to the lab which happens to be located in the Strathmore Hospital and very close to my house. That’s one good thing about living here, you never see a traffic jam and seldom is anything that busy that you have to wait, except for H1N1 vaccination lines.

I went to Tim’s for my large double-double then returned home for about 45 minutes thinking I would plan out the timing of my pee just right. On any other day this probably would have been the case but of course not the day I’m going for a urine test. There were only about four people in emergency; this is definitely the place to go if you need to see a doctor. There is absolutely no comparison to the emergency rooms in Calgary, you can wait for hours upon hours but Strathmore isn’t usually busy. So the lab wasn’t busy either and I got my pee jar right away, only wished I could have peed right away. My bladder always seems to play mind games with me, it’s so disobedient! It really sucks to not be able to urinate when I want to and in some cases when I really need to. Anyway after almost an hour of scooting around the emergency room trying to find any magazine other than Woman’s Digest or boring hospital and medical brochures, I eventually had to go.

So a little off schedule now, the rest of my day began. I grabbed a quick bite and headed into the city to complete a few errands and pickup my prednisone and a jug of chocolate milk which of course took much longer than expected. It was my weekend with the kids so after downing my steroids I was off to Airdrie to pick up my children. Then I had to drive all the way back down to the southeast to Douglasdale where friends were going to watch the kids while I went skiing. I had enough time to sit down for a bowl of soup, get changed into my ski clothing and take off again to Canada Olympic Park. I arrived at the hill in time to register and hit the slopes by 7:00, the type of non stop day that really plays me out! I was completely beat by the time I was leaving Douglasdale and the last thing I wanted to do was go for another long drive so that I could exert a bunch more energy that I didn’t have left in the tank! Like I’ve stated before, I wanted to take the easy way out and bail on my evening but had to force myself to keep moving.

Once I was outside in the fresh air and strapped into my sit-ski I was feeling much better. At the end of last week’s lesson I said I had the fundamental skills down so this lesson was more or less about practice. The sit-ski supervisor is not disabled at all but he rides a sit-ski and last week demonstrated what he referred to as the extreme example of control. I was able to duplicate his example of a completely controlled run on my first try which completely surprised me but blew my instructors away. When I got to the bottom she said, “What happened to you during the last week? That was perfect!” My other instructor went to find the supervisor to watch the second run and when I was at the bottom the supervisor told her that was it, I was ready to go to the top! Totally unexpected but totally cool, my first chairlift ride in over 18 years! It was a very different experience loading onto the chair while strapped into my sit-ski. I had a volunteer on either side of me so when the chair came around they could help me lift my seat high enough for the chair to slide under and up I went. Getting off was easier because I just pushed down the ramp and away I went. Talk about a totally different view and experience looking down from the top of the hill.

So away I went skiing down from the top a little intimidated but excited feeling totally invigorated and unaware of the MS symptoms that had been affecting me earlier. My first run from the top was pretty scary, it’s a complete mind freak because I was on a slope not much steeper than the hill I had been practicing on but finding that same control wasn’t as easy. There were a few times that I’d begin picking up a lot of speed and not feeling much control. With so many other snow boarders and skiers sharing the hill I was worried about running someone down! I took a few pretty good tumbles, thank God for my helmet. Anyway I was skiing and you can’t imaging the thrill and burst of energy that I was feeling! I was thinking I could attribute some or my performance and energy to the steroids but who knows. It was a very long day for me but finished up on an awesome note.

I’ve included some photos to help explain what my steroid use is about. The big tablets contain 50mg of Prednisone and I take 25 pills in the morning every second day for five doses. This is an extremely high dose and again freaked out the pharmacist when I filled it. I haven’t needed steroids since early 2007 but I’m not new to this regiment by any means. I’ve probably been on this dose at least 15 times over the years. The drug is meant to reduce the inflammation in my brain and an immunosuppressant in order to tame down my bodies immune response and reduce or alleviate the symptoms brought on by my attack. I have always tolerated the drug well and usually see improvements within 3 to 5 days however they have been most effective when I’ve experienced an acute and very disabling attack. My current situation is more of a smouldering progression that seems to slowly build which is why I’m less confident in the success of steroid use this time around but like I said, I needed to try something.

Since I’ve been on high dose Prednisone so many times it doesn’t faze me but the reference to high dose is an extreme understatement. Out of curiosity I recently did some research on Prednisone uses, dosages and side effects. I’ve always been aware of the side effects but had a bit of an eye opener in what I’ve just learned. First of all, there are many different conditions where Prednisone is used like severe allergies, AIDS, cancer, arthritis and the list goes on and on. I was shocked when reviewing the dosage for this long list of ailments, nothing even came close to the high dosage I’m taking. The majority of uses called for 30mg to 60mg per day, the highest dosage I could find was 180mg per day. My prescription is way off the map; in fact the curve is so steep it’s like shooting off into space on a rocket ship! I’m taking 1,250mg per day all at one time, no wonder pharmacists always flip out.

The list of possible side effects is huge, far bigger than I was previously aware of even though I knew of some very serious possibilities. The list goes on and on with problems like confusion, hallucinations, mood swings (sudden and wide), abdominal pain, osteoporosis, eye pain, irregular heartbeat, muscle pain and cramps, trouble sleeping, it is huge! I’ve always tolerated the drug very well and haven’t had any serious issues but I’m sure you can now understand why I try to avoid high dose Prednisone use. I’ve only been on two doses so far and I can notice some improvement in my energy and my legs so hopefully this will continue with my final three doses.

I really wish I could undergo the Liberation procedure because Zamboni found that when the treatment was performed in an acute MS attack, all symptoms went away within 4 hours to 4 days! Sounds a lot more effective than steroid use to me. The MS world has been anxiously awaiting the first results from the Buffalo study due to be released by mid February. In the meantime Dr. Zivadinov who is the director of the Buffalo Neuroimaging Center has issued a preliminary press release which is very encouraging. They firmly believe that testing Zamboni’s theory will result in ground breaking discoveries in the field of MS. They are in the process of finalizing the second phase of the study which will include an additional 500 participants and use a new Doppler machine developed specifically for CCSVI. Dr. Zivadinov states that “this particular research is having an impact like no other we have known.” They have further announced that the center will begin to offer CCSVI Diagnostic Venous Testing beginning in mid-February 2010. They will be the first Center in North America to use such a machine, and will begin to provide training for other Centers that have expressed an interest in mastering the art of CCSVI diagnosis. An additional announcement from the press release states: the Buffalo Center BNAC-JNI has also taken the first step towards treatment of CCSVI. Together with world experts in vascular surgery from the Department of Neurosurgery at the University of Buffalo, we will soon begin the Controlled Randomized Endovascular Therapy (CRET) study for CCSVI. This will be a 6-month study that will evaluate the safety and preliminary efficacy of therapeutic angioplasty, and will include 30 patients with MS.

Hopefully we will see Canadian centers jump on board in similar fashion but this will be unlikely without applying pressure. We have a very determined and vocal MS community that has developed around CCSVI, now we must organize our voice and demand action! I’m sure ideas will spring into life once the Buffalo test results are released in mid-February but for now this is very positive news in our quest to stop this terrible disease.

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