I am one very weird science experiment! I have been taking Avonex shots every week since April and overall my side effects have been minimal. On Monday night I took my shot as usual. I often skip the Tylenol/ibuprofen step since I seem to have very little side effects from the medication. After about an hour, I noticed that I was feeling slightly achy so I took a couple ibuprofen. I have found that as odd as it may seem, Extra Strength Tylenol makes my stomach hurt. I know, I know...Tylenol is supposed to be easier on your stomach than ibuprofen. Someone forgot to tell my stomach!
Within a few hours of taking my shot, I began having chills. I have never had chills from the Avonex. Not even once! The makers of Avonex state that when you take the medication over a long period of time, the side effects lessen. Maybe as the amazing opposite girl, mine are going to increase. Who knows? I am just one strange biological specimen!
A note to other MS patients who may be taking Avonex...
After several months of injecting that huge needle into my leg, I read in the paperwork from my pharmacy that it would be easier to inject if I iced the spot first.
Well DUH!!!!!!!
I have spoken to a multitude of people from the drug company. They have nurses and case workers and all kinds of people who contact you. I initially injected at Cleveland Clinic, surrounded by health professionals. Why, oh WHY did not one of those people give me that information? I had to change pharmacies (insurance company junk) to get this little hint that certainly DOES make injecting easier. You would think that would be one of the first things on their To Do List...Inform these people who have just been told they have an incurable disease and will have to be poking a long needle into their leg once a week for the rest of their lives, that there is a way to make it a little easier, a little less painful and certainly less stressful. Just ice the injection site to numb it BEFORE you shoot!!!!!
Recently someone from the drug company called to check in with me and I gave them this information. Low and behold, they already KNEW this and even have gel packs that they will send out to you for FREE for you to use on your injection site. AGAIN...WHY did no one mention this?
So, if you have to take Avonex shots, just call Biogen Idec and tell them you want one of their nifty little gel packs to ice your injection site. Then ask them why no one told you about this from day one. My take on it is, that if they offer the gel pack, they are saying...Hey, this is going to hurt! Well, it does hurt and if you can make it a little easier on us, then DO IT!!!!!
Something else you may want to know...You can buy a smaller needle to inject with. It is 20% smaller than the one that is packaged with the Avonex. Whatever...Why not just GIVE them to us to begin with. The darn medicine is $1,856.00 a month! Can they not throw in a smaller needle for that amount of money?
By the way...it is snowing in Ohio on this beautiful December morning.
Within a few hours of taking my shot, I began having chills. I have never had chills from the Avonex. Not even once! The makers of Avonex state that when you take the medication over a long period of time, the side effects lessen. Maybe as the amazing opposite girl, mine are going to increase. Who knows? I am just one strange biological specimen!
A note to other MS patients who may be taking Avonex...
After several months of injecting that huge needle into my leg, I read in the paperwork from my pharmacy that it would be easier to inject if I iced the spot first.
Well DUH!!!!!!!
I have spoken to a multitude of people from the drug company. They have nurses and case workers and all kinds of people who contact you. I initially injected at Cleveland Clinic, surrounded by health professionals. Why, oh WHY did not one of those people give me that information? I had to change pharmacies (insurance company junk) to get this little hint that certainly DOES make injecting easier. You would think that would be one of the first things on their To Do List...Inform these people who have just been told they have an incurable disease and will have to be poking a long needle into their leg once a week for the rest of their lives, that there is a way to make it a little easier, a little less painful and certainly less stressful. Just ice the injection site to numb it BEFORE you shoot!!!!!
Recently someone from the drug company called to check in with me and I gave them this information. Low and behold, they already KNEW this and even have gel packs that they will send out to you for FREE for you to use on your injection site. AGAIN...WHY did no one mention this?
So, if you have to take Avonex shots, just call Biogen Idec and tell them you want one of their nifty little gel packs to ice your injection site. Then ask them why no one told you about this from day one. My take on it is, that if they offer the gel pack, they are saying...Hey, this is going to hurt! Well, it does hurt and if you can make it a little easier on us, then DO IT!!!!!
Something else you may want to know...You can buy a smaller needle to inject with. It is 20% smaller than the one that is packaged with the Avonex. Whatever...Why not just GIVE them to us to begin with. The darn medicine is $1,856.00 a month! Can they not throw in a smaller needle for that amount of money?
By the way...it is snowing in Ohio on this beautiful December morning.
3 comments:
hey, just stumbled across your blog today. i was on avonex until recently. i agree that biogen should tell people about the smaller needles, and i have told the company that.
people do need to talk to their neurologist first, but most who are not significantly overweight should be able to use them.
anyway, since i'm not on the avonex anymore (switched to betaseron), i have like a year's supply of the 1 inch, 25g needles that i would be happy to give to you or anyone else who could use them. they are of course all in their unopened original sterile packaging. if anyone wants them, email me at hardcoreasbubbles at yahoo dot com. the needles are inexpensive, but i just hate the idea of stuff going to waste.
im 27 live in NY
i came across your blog because im on the IV solumedrol and wanted to see if anyone else has the reactions i do. I'm knocked off my butt too!! i thought i'd be able to hit the gym even better...instead i wanna curl into a ball and sleep. it's even worse when the 4 days course is over, i can spend an entire weekend in bed withdrawing with bad aches. Thank for the heads up on the gel for icing my leg... cause some days it "smarts" like a mother!
I also get the chills from avonex from time to time and I have been on it nearly two years!. i can go two months and be fine and then one night just have chills and back aches and a headache.
thanks for your blog.. good to know im not alone :)
Hi NY. Thanks for stopping by. I have only been on IV solumedrol one time. I haven't had much of a reaction to the Avonex again for quite some time other than a headache. I get a headache almost every week, some weeks worse than others, but I still feel very fortunate that I have never had the awful flu symptoms so many others complain about.
You are so not alone. Stop by any time!!!!
I hope you are off the IV and feeling better very soon!
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