MS Update 3-15-09
Dear Friends and Family - Happy Spring to you all!
My Aunt Joanne suggested that I should keep a blog but I haven't gotten around to figuring out how to do one because sometimes it's just easier to email.
A very happy 2-days early St. Patrick's Day to you all! It is one of our family's favorite holidays to celebrate and it is a very special time of the year - I hope that you are all enjoying it, whether or not you are Irish!!!
Now, on to the news. I had my 3-month follow-up appointment with the neurologist a week and a half ago. He was amazed at the giant red welts that I have all over from the Betaseron injections, which are subcutaneous, and decided that I needed to switch medications.
As of yesterday, I am now taking a medication called Avonex, which is still beta-interferon, but it is a intramuscular injection. The good news is that I only have to give myself a shot once a week now. The bad news is that the side effects are the same as with Betaseron, and they likely won't improve over time because it is only a once-a-week shot. However, I am learning to manage the side effects better than before, so I have hopes for this medication. Because it goes into my muscle, it also shouldn't cause the giant red spots that last for months on end, so that is a really good thing.
There are a couple of other downsides to switching medication - the biggest being a matter of convenience. Unfortunately, this medication has to be kept refrigerated, so it is going to make traveling a little more inconvenient and I'll have a few more hoops to jump through in figuring out how to travel with a little cooler. I guess for the time being I will just have to put off any lengthy trips to the jungle, but I'm sure if the circumstances call for it I will come up with a solution.
Also, there is so much research in the MS world right now that hopefully something will come down the pipeline in the next couple of years to eliminate injections or refrigeration altogether.
The other downer, albeit I'm sure it is only temporary, is that there are 3 main lines of
medication for MS right now. I am now down to 2 options, Avonex or an intravenous medication called Tysabri. It's a little scary to be only 4 months into my diagnosis and already be down to only 2 options, but I just hope that research is going to provide more options in the future.
So, before I get into what my first dose of Avonex was like, wouldn't you just know that my good ole Irish luck kicked in once again this week....and I ended up in the emergency room Thursday night with severe food poisoning?! Talk about ridiculous....but I was so so very sick. We're still trying to determine the culprit - but it's likely it was an in-service catered lunch I ate on Thursday afternoon.
Unfortunately, while getting food poisoning is just a matter of dumb bad luck, the doctors think it could have possibly been more severe for me because the role of the beta-interferon is to suppress my immune system. That means that when I come into contact with a bug (bacteria, virus, etc.), I have less ability to fight it off right away. Can you believe I'm actually taking medication that makes me more vulnerable to pathogens!?
Anyway, Steve and I spent a very very long night in the ER....He is really a saint - I know it is so hard for him, or anyone, to go through this. Thank God he's as strong and supportive as he is. As a result, Steve and I had a very low-key weekend. Tried to sleep on Friday, then I had to work yesterday (Saturday) and today....we have a clinic every 6 months for the research study I coordinate, and it just happens to have been this weekend. Talk about crappy timing to get food poisoning!
Oh well - I muddled through and made it home in time to catch some of the South Side Irish parade on TV this afternoon, write my St. Patty's cards, and listen to some good Irish tunes. I am already feeling so much better...I just wish that the whole weekend hadn't been shot!
Anyway, that's all the big news - changing medication and going to the hospital again. What I wouldn't give to have a boring, uneventful life!!! The good news, though, is that I have 2 days off Thursday and Friday and will be traveling to Michigan to see my Godson, Noah Christian (and his brother Cooper and Mommy and Daddy Amber and Marcus Christian), and to see my family for the first time since Christmas! I can't wait...it's always good to go home... As always, I couldn't do this without all of you....thank you...Erin Go Bragh! (Ireland Forever!)
My Aunt Joanne suggested that I should keep a blog but I haven't gotten around to figuring out how to do one because sometimes it's just easier to email.
A very happy 2-days early St. Patrick's Day to you all! It is one of our family's favorite holidays to celebrate and it is a very special time of the year - I hope that you are all enjoying it, whether or not you are Irish!!!
Now, on to the news. I had my 3-month follow-up appointment with the neurologist a week and a half ago. He was amazed at the giant red welts that I have all over from the Betaseron injections, which are subcutaneous, and decided that I needed to switch medications.
As of yesterday, I am now taking a medication called Avonex, which is still beta-interferon, but it is a intramuscular injection. The good news is that I only have to give myself a shot once a week now. The bad news is that the side effects are the same as with Betaseron, and they likely won't improve over time because it is only a once-a-week shot. However, I am learning to manage the side effects better than before, so I have hopes for this medication. Because it goes into my muscle, it also shouldn't cause the giant red spots that last for months on end, so that is a really good thing.
There are a couple of other downsides to switching medication - the biggest being a matter of convenience. Unfortunately, this medication has to be kept refrigerated, so it is going to make traveling a little more inconvenient and I'll have a few more hoops to jump through in figuring out how to travel with a little cooler. I guess for the time being I will just have to put off any lengthy trips to the jungle, but I'm sure if the circumstances call for it I will come up with a solution.
Also, there is so much research in the MS world right now that hopefully something will come down the pipeline in the next couple of years to eliminate injections or refrigeration altogether.
The other downer, albeit I'm sure it is only temporary, is that there are 3 main lines of
medication for MS right now. I am now down to 2 options, Avonex or an intravenous medication called Tysabri. It's a little scary to be only 4 months into my diagnosis and already be down to only 2 options, but I just hope that research is going to provide more options in the future.
So, before I get into what my first dose of Avonex was like, wouldn't you just know that my good ole Irish luck kicked in once again this week....and I ended up in the emergency room Thursday night with severe food poisoning?! Talk about ridiculous....but I was so so very sick. We're still trying to determine the culprit - but it's likely it was an in-service catered lunch I ate on Thursday afternoon.
Unfortunately, while getting food poisoning is just a matter of dumb bad luck, the doctors think it could have possibly been more severe for me because the role of the beta-interferon is to suppress my immune system. That means that when I come into contact with a bug (bacteria, virus, etc.), I have less ability to fight it off right away. Can you believe I'm actually taking medication that makes me more vulnerable to pathogens!?
Anyway, Steve and I spent a very very long night in the ER....He is really a saint - I know it is so hard for him, or anyone, to go through this. Thank God he's as strong and supportive as he is. As a result, Steve and I had a very low-key weekend. Tried to sleep on Friday, then I had to work yesterday (Saturday) and today....we have a clinic every 6 months for the research study I coordinate, and it just happens to have been this weekend. Talk about crappy timing to get food poisoning!
Oh well - I muddled through and made it home in time to catch some of the South Side Irish parade on TV this afternoon, write my St. Patty's cards, and listen to some good Irish tunes. I am already feeling so much better...I just wish that the whole weekend hadn't been shot!
Anyway, that's all the big news - changing medication and going to the hospital again. What I wouldn't give to have a boring, uneventful life!!! The good news, though, is that I have 2 days off Thursday and Friday and will be traveling to Michigan to see my Godson, Noah Christian (and his brother Cooper and Mommy and Daddy Amber and Marcus Christian), and to see my family for the first time since Christmas! I can't wait...it's always good to go home... As always, I couldn't do this without all of you....thank you...Erin Go Bragh! (Ireland Forever!)
posted by Kate @ 9:53 PM
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