To stop or not to stop??

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tkelly3287
Regular Member


Date Joined Jan 2007
Total Posts : 142
   Posted 4/28/2008 2:40 PM (GMT -7)   
I just read a post about this and I want some help and advice. I am thinking about stopping my interferon altogether. I had to come off of it for a week b/c my 2 year old was sick and I could not be sick and that week without it was so much easier than my regular life with it. I get really sick from it and I lose one day a week. The week I came off of it I lost weight, had more energy and felt "normal". Since being on it again, I feel HORRIBLE! My eye is twitching, I am so so tired and my body hurts. I know that this will be the same even if I am off of interferon but at least I won't be sick for one whole day a week. I feel like I can't be a mom on interferon. I have to have help w/ my girl once a week b/c on the day after my interferon i literally can't walk. I will talk to my doc. But I think I am beginning to think that if not taking interferon now will make my life more enjoyable maybe it is worth it. I also want to have one more child and I can't take interferon while pregnant so maybe I come off of it until I give birth (probably a year down the road). Please don't be afraid to yell and tell me I am an idiot. My husband and mother both think I am thinking crazy thoughts. The one thing the docs have told me is that interferon it what will give me a chance at dancing at my daughter's wedding. I keep thinking I want to dance with my daughter now. Oh and I am totally taking way toooooo many pain meds... Any advice will help. I really don't know what is best.

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 4/28/2008 6:18 PM (GMT -7)   

How long have you been ON it?  The side effects do tend to lessen after the first couple of months.  Sounds like you're on Avonex, a once-weekly injection?  Are you taking ibuprofen before you inject, and again the next day?

You might want to consider Copaxone. It has significantly fewer side effects than the interferons, and might be a good alternative for you.  I don't know about taking it and pregnancy, so if you're sure you want another child, you should talk with your doctor about that.

You should also talk with your doctor about the pain meds. I don't know what you're on..but sometimes they will "cancel each other out"..and maybe that's what's happening with you. It might be time to gather up all your prescriptions and sit down with the doctor and go through them, one by one, and see what you might eliminate, and if there is something that will be better for you.  Not all meds work well for everyone; there might be something else better for you.


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 4/28/2008 6:24 PM (GMT -7)   

Hey Teresa,

I am totally with Uppitycats on this one.  Why don't you give copaxone a try?  I find that I have no side effects aside from the local bump reaction.  I am not going to call you an idiot my friend.  I understand that you are frustrated and that you have given avonex a good long time..........over a year if I recall.  I think you do need to talk to your doctor about how you feel.  It is not a good thing to feel that you are losing so much time to "horrible" side effects.  Good luck to you on this.  Please keep us posted.

Love and prayers,


Gretchen       co-moderator MS board       diagnosed with MS July 2006


tkelly3287
Regular Member


Date Joined Jan 2007
Total Posts : 142
   Posted 4/28/2008 6:31 PM (GMT -7)   
Thanks ladies! Gretchen you are right I am on year 2 of Avonex. I miss chatting with you!! Maybe I should go for copaxone. My doc always strays me away from changing. I take vicodin for the pain it is the only thing that works. I also take baclofen and alrozapam and ibuprofin. So Uppity would vicodin be cancelled out by any of those? I have always had these side effects with my shot.

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 4/29/2008 5:49 AM (GMT -7)   
tkelly3287 said...
Thanks ladies! Gretchen you are right I am on year 2 of Avonex. I miss chatting with you!! Maybe I should go for copaxone. My doc always strays me away from changing. I take vicodin for the pain it is the only thing that works. I also take baclofen and alrozapam and ibuprofin. So Uppity would vicodin be cancelled out by any of those? I have always had these side effects with my shot.
I'm sorry, I don't know the answer to your question. The only medication I take -- other than Betaseron and oxybutanin (generic Ditropan for bladder control) is ibuprofen.
 
But your doctor should be able to figure that out.  I'm assuming you mean "lorazepam" for the one drug you list...here is a web site that talks about that, and side effects.  It might be that it, along with the Avonex side effects, is magnifying your aches and pains and other problems...
I hope you can get this sorted out and get on a better track.  Take care.

...I am not a doctor, nor health professional, and don't pretend to be one, here.....


tkelly3287
Regular Member


Date Joined Jan 2007
Total Posts : 142
   Posted 4/29/2008 6:38 AM (GMT -7)   
uppity...thanks! Ya know I have been on lorazepam for a while and I fought my doc in the beginning saying I did not want it b/c I knew it was addictive and what not (I used to take klonipin years ago and went through heck getting off of it!) He totally pushed me into lorazepam for many reasons, I think the main one being he was concerned w/ my anxiety levels. Now I am wondering if maybe it is not time we re-visit it and see if I still need to be on it. I had not realized the side effects of it! Well we'll see what he says. I know I have to be reasonable and take my meds but I just want quality of life back. I think I am just looking for the quick solution and when it comes to this disease there is no quick solution! Thanks for the advice ladies!

Willowmom
Regular Member


Date Joined May 2008
Total Posts : 88
   Posted 5/6/2008 11:09 PM (GMT -7)   
Hi everyone- I'm new to the site but have been reading away like crazy for two days. Lovely to read about so many people with the same symptoms and issues as myself (not lovely that we all have them). I'll jump in more on some other topics, but couldn't resist this one tonight.
I was diagnosed w/ RRMS in 2003 and started on Betaseron right away. I had no relapses, though plenty of symptoms that flare up still. However, in 2007 I was running out of injection sites that weren't ruined with bruising and bumps and I had been anemic for a year despite taking iron. So I switched to Avonex.
Avonex side effects I had were way worse than any 'flu' symptoms from the Betaseron. Like tkelly I had to have help once a week because I was completely laid up for 12- 16 hours. I had to go to a 4/9s work schedule to have a day to recover from shot. So after six months and never more than a 75% dose I went off of it. I am 5 months without anything and I am pretty sure the last two weeks have been a relapse, though not severe enough for me to overcome my fear of solumedrol IVs (let's talk about that somewhere else).
My point- My self-help group members explained that there are 2 types of AVonex. Pre-mixed formula and the type that you reconstitute. I had been on the newer pre-mixed which has caused some patients intolerable side effects who had done fine with the 'old' Avonex. Armed with that knowledge (my neuro never mentioned it) I am going to give the 'old' version of the Avonex a try. Just waiting on nurse to come out and teach injections. I did my own subcu's but never got up the nerve with the Avonex, but I will now. Copaxone is a possibility for sure, but check which version of the Avonex you were on.
A pleasure to meet you all.

tkelly3287
Regular Member


Date Joined Jan 2007
Total Posts : 142
   Posted 5/9/2008 7:51 PM (GMT -7)   
Willowmom..... I am on the old school avonex. I mix it myself. My neuro made me do this from the get go b/c he truly believes the side effects are less. However, in my case I was not so lucky. It is sometimes hard to get the non mixed stuff. Let me know if you have any problems in that area b/c i know what companies offer it. and Good luck!

Jetta1
New Member


Date Joined May 2008
Total Posts : 2
   Posted 5/12/2008 8:00 AM (GMT -7)   
     I'm new to the forum but not new to M.S.
I was dxg in Feb 2003.  Did beta seron for 2 years
but side effects were nearly worse than the
m.s.  I felt like I was loosing confidence in it and I think
that is possibly half the battle.  My doctor put me on
copaxone and it was great.  I felt alot more human. I was
for approx 2.5 years. It was summer and I had a very physical outdoor job (stupid I know but was still in denial
that this was going to change my life)  "God said. Ha"
I suddenly felt like I had been hit by a truck.  All symptoms at the same time. Double vision, no balance,
slurred speech, my skin hurt all over.  I think my hair even hurt.  Did the IV steroids.  Then I just became a monster with the same symptoms and a temper from HELL.
     I considered myself to feel about 3 beers in all the time and I only weighed 110 lbs.  So that was rather drunk feeling.  I got the bonus of the hangover at the same time. devil
     I've been on Rebif since 03 but it is an interferon
too so side effects still suck really hard.
    I just saw this month that on the rebif box it says that an interferon beta one -1a is produced by ********Chinese Hamster ovary cell*********
 
No wonder it makes us feel bad.  Maybe we are turning into hamsters.  I now have the cheeks for it.
Anyway, I'm afraid to quit because the relapses are so much worse than the side effects.
 
Hang in there and do what ever you feel confident about.  The chemicals do their thing but the rest is up to us, and our attitude
     May God Bless you during your time of struggle.
 
 
 
 
 
 
 
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