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Posted 3/23/2008 4:01 AM (GMT 0)
confused  I am in a really weirs funk trying to figure out this medication thing. I am taking avonex, have been for 3 months now and i will be honest ( not to scare anyone new) I hate it. I hate the side effects, i hate how bad the shot hurts, I hate having to inject myself...the whole thing just bothers me. I have been back and forth about whether or not to stay on injection therapy all together, I know what it does, I know that it would be a huge gamble to go off it, and I also know that these are all probably emotions that we all go threw. What i don't know is what would happen to "me" if i wasn't on it and will never have the answer to that question unless i tried to not take it. I do not want to end up in the hospital again, and i don't want to have progressive disability so all these things logically make sense to stay on it but emotionally it is taking a toll. I don't want to be a whiner, I want to be strong but it is so hard sometimes to not just cry. I thank god that i found this forum because getting input from you guys that actually understand what i am going threw is the best thing. I was doing my injections on friday nights for a while and last week i decided to do it on saturday night instead and stayed that way for this week, and all day today it felt as if i was going threw a withdrawal. Almost as if i had already taken it but i hadn't. I just took it at 1130 so that I could go right to bed but i have to much on my mind to sleep(thats why i am venting lol) I guess I am still just getting used to the fact that this is something i will have to do and deal with for the rest of my life. I suppose i am still getting used to the fact that i have MS and nothing is going to change that. I am just emotional, and confused and sometimes scared. Going to try to get some sleep! thanks for listening (reading lol) hope all is well for all of you. Happy Easter

linz

Posted 3/23/2008 11:52 AM (GMT 0)
Hi, I'm sorry that you are having such a tough time with the Avonex, I have been on it for about a year and a half now. did you know that you can get the needles in a smaller size? you can request them from the pharmacy. Also, do you take tylonel before injecting and every 4 to 6 hours after? I've noticed that I hardly have any side effects unless the tylonel wears off. Please keep in mind that the longer you are on it, the less the side effects are. In some cases, Avonex can make you sad, if you are getting depressed, talk to your doctor, he(she) can prescribe something for you. Hang in there, it will get better. I know, it's overwhelming(sp?) dealing with the fact that you have ms and then to have to go though the treatment. Give yourself time to adjust to it.
Posted 3/23/2008 3:39 PM (GMT 0)

Hey Lindsay,

I am sorry you are having a rough time.  Allow yourself that.  You need to feel these feelings.  There is a huge period of adjustment that happens to anyone who is dealing with being diagnosed with a chronic disease.  You grieve the loss of your health and you are learning how to deal with a complicated and painful medical therapy.  I used to get really down (and sometimes still do) and there was no way to cheer myself up.  I decided to go the other way.  I called it "wallowing."  I just allowed myself to feel whatever it was I felt - I wallowed in it until I felt done. 

I also got a really good book.  I found it here in the resource sidebar.  It is called Ms and Your Feelings and it is by Allison Shadday.  It was written by a therapist who happens to have MS.  I found this book extremely helpful.  Don't just read it.  There are journaling exercises that really helped me work through my feelings on this.  I also had a very good friend who shared in this process.  I would share all my journal entries with this friend and she would help me delve deeper and she kept me honest.  There was no being shallow or not dealing with feelings.  It was a lot of hard work but I am so much better for it.

I know this is really hard Lindsay, but let me assure you that things will get better.  It is hard to imagine right now but hang in there.  You are in a bad place right now but let me assure you, it will get better.  I know that there is little comfort in that now, but hang in there and one day you will find that you thought about MS a bit less.  That is the start of your adjusting to this.  It can take a few months or it can take a year or more.  Make sure you always tell your doctor how you are feeling about all this.  Many people with MS need help with this adjustment period and being treated for depression is very common.  Take really good care of yourself, you deserve it.

Let us know how you are feeling.  Love and prayers,

Posted 3/24/2008 11:29 AM (GMT 0)
Bless your hear and Gretchen is on the mark. Id so love to get that book if my memory holds up lol. I think what she is saying makes so much sense.

Do not beat yourself up Linz, i wrestle every day with copaxone (even tho there are no side effects to that extreme) but even if you take away all those flu like symptoms, guess what ? You find you still go back and forth with acceptance of this disease vs feeling you dont really have this (on better days) then find yourself tempted not to add something to your body so harsh...
til it hits again. So please please remain on a therapy. Speak with your doctor as Gretchen said. Maybe you should continue Avonex but find away to vent as you did here on the forum. Maybe they will suggest a different therapy but i would not have you ignorant that its human nature to still wonder and buck against this until acceptance has worked its way to the end. So "allow" yourself.

I've always tried to come through all things on top. Ms takes the bottom out of a world for everyone. Even more so with persons who need to control it all. Ms shows you that your not the one in charge ....but....as Gretchen said, after awhile and you find that you do meet/read about persons such as this book has in it. Or even Gretchen's place of having dealt with this horrid transition. It gives us hope to hang on.......and know that the body will calm in some areas, we will absorb more and more but think about it less and less as time goes on. I realize that 4 yrs ago IF i felt what i feel today, id be headed for the ER, as it is im not....becuz i accept this much pain or ms..(dont have a choice lol).

what you feel i feel. It hurts, its maddening and i do think it takes some going through. I also think it sometimes becomes like a white water raft ride. You are not the one in charge but if you ride through some of it and hold onto supporters ...like this site and family and friends..at the end you find a bank to rest on. Might be sore from the ride and a rock or two bumped but your still here!!!!

I do feel for you as well as i feel for anyone going through this. I do think its something that we need to remember that everyones at a different stage or year of MS on here. Of having it or the damage it has done. So while some may have already went through what you and i are going through emotionally , its not like they havent felt this....so your NOT alone!!!!!!!!!!!!! But isnt it so encouraging to see them here? Posting , and encouraging and knowing what all you fear?

Please accept a hug from me (nonpainful one lol) and...........let yourself vent. Get that book if at all possible and it may help you to feel like you have someone at home (that person in the book and journal exercise) that knows what your going thru! I really am jotting the book down to go and order today, i hope that you can afford to get it too and perhaps then we can all relate to where your at in the journal?


I really wish i could help you but if nothing else, Please KNOW that im going through it too!!!!!!!!!!!!

Hugs

kiera
Posted 3/24/2008 6:50 PM (GMT 0)
thank you all so much for your replies and support! I am hanging in there. I appreciate all the support you guys give it is so nice to have people who understand!

I did not know that I could request smaller needles!! I just ask the pharmacy and they can do that? I will def do that if thats the case because that is half my problem doing the injection the size of the needle terrifies me!

 

thanks again

linz

Posted 3/24/2008 7:46 PM (GMT 0)

dealin83 said...
thank you all so much for your replies and support! I am hanging in there. I appreciate all the support you guys give it is so nice to have people who understand!

I did not know that I could request smaller needles!! I just ask the pharmacy and they can do that? I will def do that if thats the case because that is half my problem doing the injection the size of the needle terrifies me!

 

thanks again

linz

I think there is a cusotmer service number to Avonex, too -- a "patient representative" number or something like that.  If they pharmacist seems reluctant or says he can't help, calling them might work.

Also -- Betaseron, also an interferon -- uses small needles (it's injected under the skin, rather than into a muscle). While you'd have to inject it more often, the needles are the same size as used by people with diabetes, who inject sometimes several times a day..so switching to Betaseron might also be an option.

Posted 3/24/2008 9:10 PM (GMT 0)
Yes there is a number for biogen idc you can get smaller needles....I have been on avonex for around 8 yrs now i didnt get flu like symptons at first but now they say it could "core" like flu symptons...I take tylenol arthritis before and 6 hours after and the next day..I still get lead-like but I can handle it now,,I just dont do much the next day..Hang in there..barb
Posted 3/25/2008 2:16 AM (GMT 0)

Hey Lindsay,

 

I just wanted to say I hope you’re feeling better today, and are able to get those smaller needles soon. As you can see from the responses above, there are a lot of people here who understand where you are coming from, and are here to support you. Keep on posting, and let us know how you are. Sending you a  :-)  . 

Sunny

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