april1848
11-19-2007, 07:55 PM
Hello everybody, I'm sort of new here.
This past Friday I had my first Avonex injection. I'd done the research, talked to others, watched the video, and I think that stuff made it harder! The injection was so easy and painless; I was very suprised.
Husband is a tattoo artist so he's comfortable weilding needles--I'm not. So he did it, and I'm proud of him.
I did get horribly sick a few hours later, and the worst of it lasted about 6 or 7 hours. I had a fever (103), chills, migraine, and lots and lots of aches. But it went away quicker than I had anticipated.
Having something yucky, like my first of many, many injections of interferon, go better than I expected is such a nice change right now!
My hope now is that these side effects go away in a reasonable amount of time. I've heard everything from two weeks to three months. I'd be very interested in hearing other experiences with this. Fortunately I can do it on the weekends, with only the housework suffering. But I hate when the medicine is worse than the effects from the disease.
This past Friday I had my first Avonex injection. I'd done the research, talked to others, watched the video, and I think that stuff made it harder! The injection was so easy and painless; I was very suprised.
Husband is a tattoo artist so he's comfortable weilding needles--I'm not. So he did it, and I'm proud of him.
I did get horribly sick a few hours later, and the worst of it lasted about 6 or 7 hours. I had a fever (103), chills, migraine, and lots and lots of aches. But it went away quicker than I had anticipated.
Having something yucky, like my first of many, many injections of interferon, go better than I expected is such a nice change right now!
My hope now is that these side effects go away in a reasonable amount of time. I've heard everything from two weeks to three months. I'd be very interested in hearing other experiences with this. Fortunately I can do it on the weekends, with only the housework suffering. But I hate when the medicine is worse than the effects from the disease.
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MSNik
11-19-2007, 08:01 PM
HI April, congratulations! First injections are scary and a huge step! Its also great that you have your husband to lean on while learning all this.
About the side effects. For me, 3 months and they were gone, however half way to that point, someone told me to try Aleve, instead of motrin or tylenol pre-injection. I did, and WOW! Aleve lasts 12 hours instead of 4, and you only have to take 1 pill....I love the stuff. Not only did it handle the aches, chills and fever, but I could sleep thru them, they were so mild...you might want to try it.
Continued good luck with your shots and feel good days ahead.
Nikki
About the side effects. For me, 3 months and they were gone, however half way to that point, someone told me to try Aleve, instead of motrin or tylenol pre-injection. I did, and WOW! Aleve lasts 12 hours instead of 4, and you only have to take 1 pill....I love the stuff. Not only did it handle the aches, chills and fever, but I could sleep thru them, they were so mild...you might want to try it.
Continued good luck with your shots and feel good days ahead.
Nikki
hitdog042
11-19-2007, 10:12 PM
Hello everybody, I'm sort of new here.
This past Friday I had my first Avonex injection. I'd done the research, talked to others, watched the video, and I think that stuff made it harder! The injection was so easy and painless; I was very suprised.
Husband is a tattoo artist so he's comfortable weilding needles--I'm not. So he did it, and I'm proud of him.
I did get horribly sick a few hours later, and the worst of it lasted about 6 or 7 hours. I had a fever (103), chills, migraine, and lots and lots of aches. But it went away quicker than I had anticipated.
Having something yucky, like my first of many, many injections of interferon, go better than I expected is such a nice change right now!
My hope now is that these side effects go away in a reasonable amount of time. I've heard everything from two weeks to three months. I'd be very interested in hearing other experiences with this. Fortunately I can do it on the weekends, with only the housework suffering. But I hate when the medicine is worse than the effects from the disease.
Everyone tolerates it differently. Next week, try using Advil or Aleve pre shot and see if you get the same thing. If you continue to get sick, it's possible your body won't tolerate Avonex. It happens to some people.
I was on Avonex for 3 years, I had mild flu like symptoms, but nothing popping Advil did not take care of.
Avonex worked for me. I've had MS for 10 years and I'm not in any stage of disability physically, other than I can't play sports anymore due to fatigue.
I've been off it for a long time, in prep for a switch to Tysabri, which begins tomorrow.
This past Friday I had my first Avonex injection. I'd done the research, talked to others, watched the video, and I think that stuff made it harder! The injection was so easy and painless; I was very suprised.
Husband is a tattoo artist so he's comfortable weilding needles--I'm not. So he did it, and I'm proud of him.
I did get horribly sick a few hours later, and the worst of it lasted about 6 or 7 hours. I had a fever (103), chills, migraine, and lots and lots of aches. But it went away quicker than I had anticipated.
Having something yucky, like my first of many, many injections of interferon, go better than I expected is such a nice change right now!
My hope now is that these side effects go away in a reasonable amount of time. I've heard everything from two weeks to three months. I'd be very interested in hearing other experiences with this. Fortunately I can do it on the weekends, with only the housework suffering. But I hate when the medicine is worse than the effects from the disease.
Everyone tolerates it differently. Next week, try using Advil or Aleve pre shot and see if you get the same thing. If you continue to get sick, it's possible your body won't tolerate Avonex. It happens to some people.
I was on Avonex for 3 years, I had mild flu like symptoms, but nothing popping Advil did not take care of.
Avonex worked for me. I've had MS for 10 years and I'm not in any stage of disability physically, other than I can't play sports anymore due to fatigue.
I've been off it for a long time, in prep for a switch to Tysabri, which begins tomorrow.
april1848
11-20-2007, 07:30 PM
Thank you both for your replies. I will definitely try aleve this Friday! It amazes me that I was so sick and then it just went away. I really do hope that this stuff, along with steroids, doesn't kill my liver. I'm also worried that I'll get sick more often. But I'll cross that bridge later.
MSNik: Thank you for your enthusiasm and acknowledgement that this was a big deal!
hitdog: Good luck with the Tysabri! I've just started to read about it and it seems like a very promising drug--as promising as MS meds can be, anyway.
I've only known that I have MS for a couple of months so there's a lot of stuff that I don't have a clue about. I read and talk to my nurse practioner, but that isn't the same as talking (typing) to real people who actually know what it feels like, to people that are on the same kinds of crazy medications.
Five years ago I was in a medical assistant program, and one of our last assignments was to pick a disease, any disease, and write a very long paper on it. I picked MS. I have no idea why--at the time I had never known anyone who had it. I wonder if deep down, I knew what would happen. Or maybe a higher power was preparing me. I don't know but it's interesting. I don't believe in coincidence.
Sorry for the babble and have a nice evening!
MSNik: Thank you for your enthusiasm and acknowledgement that this was a big deal!
hitdog: Good luck with the Tysabri! I've just started to read about it and it seems like a very promising drug--as promising as MS meds can be, anyway.
I've only known that I have MS for a couple of months so there's a lot of stuff that I don't have a clue about. I read and talk to my nurse practioner, but that isn't the same as talking (typing) to real people who actually know what it feels like, to people that are on the same kinds of crazy medications.
Five years ago I was in a medical assistant program, and one of our last assignments was to pick a disease, any disease, and write a very long paper on it. I picked MS. I have no idea why--at the time I had never known anyone who had it. I wonder if deep down, I knew what would happen. Or maybe a higher power was preparing me. I don't know but it's interesting. I don't believe in coincidence.
Sorry for the babble and have a nice evening!
MSNik
11-20-2007, 07:45 PM
HI April, babble away. Thats actually really interesting that you had some sort of interest in learning about MS prior to ever suspecting you had it. I hope that writing about it taught you more than the average person knows.
You said that you are kind of new to this...honey, Ive had it for just over a year, and I still consider myself new to it. Basically because it never stays the same for long! One of the most amazing things about MS is its so unpredictable.....that and the fact that no two people ever have the same symptoms in the same order! Its all very bizarre.
We do find really close friends on this board- and you better believe it is SO much better to vent and talk to people who truly have been there or understand that....so welcome to our family! We are here for you!:D
Have a wonderful holiday!
Nikki
You said that you are kind of new to this...honey, Ive had it for just over a year, and I still consider myself new to it. Basically because it never stays the same for long! One of the most amazing things about MS is its so unpredictable.....that and the fact that no two people ever have the same symptoms in the same order! Its all very bizarre.
We do find really close friends on this board- and you better believe it is SO much better to vent and talk to people who truly have been there or understand that....so welcome to our family! We are here for you!:D
Have a wonderful holiday!
Nikki
jlbrow7
11-24-2007, 02:17 AM
I used Avonex for a few years and had a terrible time (the flu every week for up to 4 days). Advil made it quite bearable though. My neuro told me that Copaxone was doing a better job and asked if I was interested in changing to it. YES!!!
Copaxone is WONDERFUL! Avonex was hell for me but I know everyone has a different exerience.
Good luck!!
Copaxone is WONDERFUL! Avonex was hell for me but I know everyone has a different exerience.
Good luck!!
april1848
11-24-2007, 05:23 PM
Well, I got thru the second injection. I am disappointed because I was told that the flu would get "noticeably better" and that didn't happen. The side effects were the same, if not worse, than the first time.
I am starting to get very depressed. The treatment, for me at this point, is worse than the disease itself. I have to wonder if it's even worth it. My nurse wants me to stick with it but I feel very discouraged. I had to start taking Amantadine to help me stay awake, and I'm worried about my job. No job, no insurance. The worries are piling on!
I have to go to a party tonite and I'm dreading it. I feel lousy. I feel very, very lonely. My house is a wreck but I can't get enough energy together to do anything about it. Everytime I think about going to work on Monday I get a cold sweat.
I hope this gets easier. I know I sound pathetic. I am trying really hard not to fall into that "poor me" trap. I just wish I could catch a break, or at least have something to look forward to. Fears about the future, even just next week, are making me anxious.
So this is what I decided to do: First of all, I'm looking for a new job, and I posted my resume online today. The resume is updated and ready to go. I'll go to the party and just fake it. At work this week, I'll just take it one hour at a time (I really hate it there!) and try to leave work at work. My mother is coming over next week to help me a little around the house.
I feel like a burden to my husband, who has been really great about giving the injections and helping me out when I have the flu. He's been doing as much as he can, and he works hard. He also wants me to stick with Avonex for awhile; he's much more optimistic than I am.
I'm trying really hard to stay positive but it's hard. I'm always on the verge of tears. I'm not suicidal or anything--please don't think that. I am just very overwhelmed at the moment.
I am starting to get very depressed. The treatment, for me at this point, is worse than the disease itself. I have to wonder if it's even worth it. My nurse wants me to stick with it but I feel very discouraged. I had to start taking Amantadine to help me stay awake, and I'm worried about my job. No job, no insurance. The worries are piling on!
I have to go to a party tonite and I'm dreading it. I feel lousy. I feel very, very lonely. My house is a wreck but I can't get enough energy together to do anything about it. Everytime I think about going to work on Monday I get a cold sweat.
I hope this gets easier. I know I sound pathetic. I am trying really hard not to fall into that "poor me" trap. I just wish I could catch a break, or at least have something to look forward to. Fears about the future, even just next week, are making me anxious.
So this is what I decided to do: First of all, I'm looking for a new job, and I posted my resume online today. The resume is updated and ready to go. I'll go to the party and just fake it. At work this week, I'll just take it one hour at a time (I really hate it there!) and try to leave work at work. My mother is coming over next week to help me a little around the house.
I feel like a burden to my husband, who has been really great about giving the injections and helping me out when I have the flu. He's been doing as much as he can, and he works hard. He also wants me to stick with Avonex for awhile; he's much more optimistic than I am.
I'm trying really hard to stay positive but it's hard. I'm always on the verge of tears. I'm not suicidal or anything--please don't think that. I am just very overwhelmed at the moment.
cindys601
11-25-2007, 05:31 PM
Hi April~
I read your last post and just wanted to send some happy thoughts your way!!
I can't relate to what your going through with your injections but I do feel your frustration with not fealing well, things piling up, work issues and so on. I'm there too and its not fun!!
But the way I have learned to cope is to keep the stress out of my life as much as possible. Focus on the important things in life and don't waste energy on the little stuff. Our bodies can only do so much so if the house isn't up to par, let others pitch in on that end. Sounds like you've got some help coming with your mom. Except it and enjoy!!
Sounds like work is a major stressor, so focus your energy on making changes with that part of your life. Just be sure that your health insurance coverage is in tact before you make a move.
Your hubby sounds like a great guy to have in your life and very supportive. I have one of them too but its hard to let ourselves lean on others, I know. This has been my hardest battle to date, but I've had to do it. When I start feeling guilty, I realize that its just a waste of my time and energy and just try to except!!
I know the feeling of being overwhelmed too much but keep sharing here. It helps sooo much to vent to other people who truly care for one another. This board has been what has gotten me where I am today!!
I wish you some rest in the next week!! I think your hubby is right to encourage you not to give up so quickly on the treatment. His optimism is something you need right now!!
Have a great night and try to think of the good things you have in your life and your future will be bright!!
Cindy
I read your last post and just wanted to send some happy thoughts your way!!
I can't relate to what your going through with your injections but I do feel your frustration with not fealing well, things piling up, work issues and so on. I'm there too and its not fun!!
But the way I have learned to cope is to keep the stress out of my life as much as possible. Focus on the important things in life and don't waste energy on the little stuff. Our bodies can only do so much so if the house isn't up to par, let others pitch in on that end. Sounds like you've got some help coming with your mom. Except it and enjoy!!
Sounds like work is a major stressor, so focus your energy on making changes with that part of your life. Just be sure that your health insurance coverage is in tact before you make a move.
Your hubby sounds like a great guy to have in your life and very supportive. I have one of them too but its hard to let ourselves lean on others, I know. This has been my hardest battle to date, but I've had to do it. When I start feeling guilty, I realize that its just a waste of my time and energy and just try to except!!
I know the feeling of being overwhelmed too much but keep sharing here. It helps sooo much to vent to other people who truly care for one another. This board has been what has gotten me where I am today!!
I wish you some rest in the next week!! I think your hubby is right to encourage you not to give up so quickly on the treatment. His optimism is something you need right now!!
Have a great night and try to think of the good things you have in your life and your future will be bright!!
Cindy
MSNik
11-25-2007, 06:19 PM
HI April, I too, read your last post and wanted to send some hope your way> Everything Cindy said is right on target, but I wanted to add something about the injections. THEY DO GET EASIER! I know its hard to imagine right now, but interferon is a drug which "all the sudden" your body gets used to. For some, it takes a month, for others a few months, but once you adjust to it, youll never have another side effect again....besides look at the ultimatum; if you tell your doc you cant do this, hes going to switch you to Copaxone and then youll have to do injections 7 days a week!:D Actually, though, i havent heard too many bad things about Copaxone, if you dont mind the daily injections!
Youre allowed to have "poor me" days. Really, you are. We all have them..and right when you think youre over them, another one is coming....its the nature of the MS beast. Things go great for months, and then things are tough...but it always ends. Remember that please, not every day is going to be bad....and we are always here to help you thru the worst of them.
You are truly lucky to have a husband who is supporting you emotionally and youre not allowed to feel like a burden to him. The only way I can put that in perspective is to say if it were him, wouldnt you do everything he is doing for you FOR HIM? You know you would. Let the man be there for you and be grateful for it!
Try to hang in there with the meds...what type of pre-injection pain reliever are you taking? Have you tried Aleve? It really works for me, and it lasts 12 hours, as opposed to 4 with Tylenol or Motrin...last resort, call the Avonex hotline and talk to the nurse- they always have suggestions for helping you thru this...be strong, this too will get easier..
Hope you have a great week ahead.
nikki
Youre allowed to have "poor me" days. Really, you are. We all have them..and right when you think youre over them, another one is coming....its the nature of the MS beast. Things go great for months, and then things are tough...but it always ends. Remember that please, not every day is going to be bad....and we are always here to help you thru the worst of them.
You are truly lucky to have a husband who is supporting you emotionally and youre not allowed to feel like a burden to him. The only way I can put that in perspective is to say if it were him, wouldnt you do everything he is doing for you FOR HIM? You know you would. Let the man be there for you and be grateful for it!
Try to hang in there with the meds...what type of pre-injection pain reliever are you taking? Have you tried Aleve? It really works for me, and it lasts 12 hours, as opposed to 4 with Tylenol or Motrin...last resort, call the Avonex hotline and talk to the nurse- they always have suggestions for helping you thru this...be strong, this too will get easier..
Hope you have a great week ahead.
nikki
april1848
11-26-2007, 09:04 PM
Thank you for your warm replies, they made me cry (in a good way). This weekend was very rough. But knowing that I can vent on this board to people who have been there makes a huge difference. I feel good today and my optimism is coming back.
I tried Aleve this time. I didn't notice any changes at all. The worst part for me were the chills--I was covered in blankets, and if one inch of skin was exposed I shook uncontrollably. That made me tense up, and I think that's where a lot of the aches are coming from. This week I'm going to try not to tense up my muscles so much.
My Avonex nurse did call me to see how things were going. She's really a great person. She assured me that some people do get this sick, that it could last for months, etc. She said my weight may have something to do with it. I weigh about 105 pounds, and she said that people with larger muscles often have fewer side effects.
There are a lot of crummy things going on in my life right now, but I need to focus on the good things. My husband, who was extremely distant at the beginning of this, and really a jerk, has really turned around. I'm seeing a new side of him. He's never had to "take care" of me before. I've always been very independent, and I took care of him when he had a heart attack last year. My mother, who thought I was imagining all of my symptoms before I was diagnosed, and exaggerating them post-diagnosis, has also been wonderful. And my oldest, dearest friend in the world told me today that she will never, ever get annoyed with me for talking about my MS and how crappy I feel. She's wonderful.
And of course there's you guys--thank you for pulling me out of my misery! I know I may go back there sometime, but I'm not there today. And I will be here to pull you out too.
I tried Aleve this time. I didn't notice any changes at all. The worst part for me were the chills--I was covered in blankets, and if one inch of skin was exposed I shook uncontrollably. That made me tense up, and I think that's where a lot of the aches are coming from. This week I'm going to try not to tense up my muscles so much.
My Avonex nurse did call me to see how things were going. She's really a great person. She assured me that some people do get this sick, that it could last for months, etc. She said my weight may have something to do with it. I weigh about 105 pounds, and she said that people with larger muscles often have fewer side effects.
There are a lot of crummy things going on in my life right now, but I need to focus on the good things. My husband, who was extremely distant at the beginning of this, and really a jerk, has really turned around. I'm seeing a new side of him. He's never had to "take care" of me before. I've always been very independent, and I took care of him when he had a heart attack last year. My mother, who thought I was imagining all of my symptoms before I was diagnosed, and exaggerating them post-diagnosis, has also been wonderful. And my oldest, dearest friend in the world told me today that she will never, ever get annoyed with me for talking about my MS and how crappy I feel. She's wonderful.
And of course there's you guys--thank you for pulling me out of my misery! I know I may go back there sometime, but I'm not there today. And I will be here to pull you out too.
MSNik
11-26-2007, 10:16 PM
April, hi. Im quite sure that when you are ready, youll be there to pull us out of our misery, too! Thank you for the offer,but let me first give you praise; what you are going thru is QUITE NORMAL. Its unfortunate that you are having a tough time right now with the Avonex..but, it will pass...and alot of it is emotional. NOT to say you are crazy, youre absolutely NOT, but youre dealing with alot. Getting used to shots, the very idea of doing shots is tough. Youve gotten to the point where you accept the idea that you have MS and then this gets thrown at you..and truthfully, no matter what, once you have a dx, you start out thrilled that you know whats wrong, and then reality hits. You have MS. Why? Why me? And all that good stuff hits....again, perfectly normal. We all went thru it.
Interestingly enough, after this initial phase passes (and it will) you will start feeling like a superstar. Youll get used to the Avonex and you will start getting on with your life. Already you have seen the support which is there from your hubby, mother and friends...and us! Its not going to stop. Youve now reached a new chapter in your life, and believe it or not, its going to be positive in many ways....it just takes alittle time to understand that and deal with it.
meanwhile, be grateful for those who do love you and support you and make sure they know how much you appreicate it...the greatest thing we can do in this life is appreciate what we have and those we have in our world~! We could spend a lifetime trying to figure out why we were dealt this hand of cards, but we'll never have an answer....instead, focus on what you DO have...let the rest play out.
Youre a wonderful asset to this board, I am very happy that you are having a better night...dont worry, the Avonex will stop hurting soon...in the meantime, try really hard to learn from each shot what helps, what hurts, and how to avoid the unplesantness..try taking one ALeve before the shot and another 2 hours after...that might help, and it says you can safely take 2 especially since you are only taking it once a week....try drinking some herbal tea with your shot, something to calm your nerves....try to pick a time when you can totally relax and get into a good TV show, movie or book afterwards, things which will help you to relax and not tense up....and remember, this wont last long and we are all pulling for you!
Big hugs.
nikki
Interestingly enough, after this initial phase passes (and it will) you will start feeling like a superstar. Youll get used to the Avonex and you will start getting on with your life. Already you have seen the support which is there from your hubby, mother and friends...and us! Its not going to stop. Youve now reached a new chapter in your life, and believe it or not, its going to be positive in many ways....it just takes alittle time to understand that and deal with it.
meanwhile, be grateful for those who do love you and support you and make sure they know how much you appreicate it...the greatest thing we can do in this life is appreciate what we have and those we have in our world~! We could spend a lifetime trying to figure out why we were dealt this hand of cards, but we'll never have an answer....instead, focus on what you DO have...let the rest play out.
Youre a wonderful asset to this board, I am very happy that you are having a better night...dont worry, the Avonex will stop hurting soon...in the meantime, try really hard to learn from each shot what helps, what hurts, and how to avoid the unplesantness..try taking one ALeve before the shot and another 2 hours after...that might help, and it says you can safely take 2 especially since you are only taking it once a week....try drinking some herbal tea with your shot, something to calm your nerves....try to pick a time when you can totally relax and get into a good TV show, movie or book afterwards, things which will help you to relax and not tense up....and remember, this wont last long and we are all pulling for you!
Big hugs.
nikki
cliftonlady
12-06-2007, 03:48 PM
Hi, I've been on Avonex for about 1 1/2 years. It does get better. The first couple of months I would come home from work the day after my shot and go right to bed (it made me really tired) and had the flu symtoms. Now I'm fine the next day.
A couple of things that really helped me was taking lots of Advil (I use the liqu gels they seem to work better) and drinking lots and lots of water. Lately I heard from a nurse on the Avonex line to eat fresh pineapple, there is an enzyme that is supposed to help with the side effects. It made a difference for me (she said canned pineapple wouldn't do it).
I know when I first started I was thinking "is this medicine really worth it". My symptoms are really mild so far, but I think of the fact that the next attack could be bad, so keep with the shots. Hang in there, there are lots of nice people here rooting for you.:D
A couple of things that really helped me was taking lots of Advil (I use the liqu gels they seem to work better) and drinking lots and lots of water. Lately I heard from a nurse on the Avonex line to eat fresh pineapple, there is an enzyme that is supposed to help with the side effects. It made a difference for me (she said canned pineapple wouldn't do it).
I know when I first started I was thinking "is this medicine really worth it". My symptoms are really mild so far, but I think of the fact that the next attack could be bad, so keep with the shots. Hang in there, there are lots of nice people here rooting for you.:D