gingypinge3
06-16-2005, 05:50 PM
I have been recently dx with ms and have been given the choice of 4 different meds. I have narrowed it down to 2.. I have several questions and will speak with my md, however, I would like anyone's oppinion about certain side effects. The 2 drugs I am considering are Rebif or Avonex. I don't have a problem giving myself shots and I can deal with the flu-like symptoms. My questions are conserning liver functions and more importantly decreasing white cells. I am a nurse and frequently work with very infectious patients. I can do the obvious precautions but I am wondering if there is anything else I can do. I really don't want to quit my job until I absolutly have to. Am I just making mountains out of mole hills or is this a real concern? Any input would be apreciated
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Barbbelle
06-16-2005, 10:18 PM
Hi!!! I also am/was a healthcare professional and I was on Avonex for 7 years. During that time I rarely was sick even though I had a lot of exposure to moderately sick people. It wasn't until I added Novantrone to the Avonex that my white counts dropped dramatically and I began to notice that I was more contagious. After my 6th Novantrone treatment, my counts didn't come back up after 3 months and we discontinued the Avonex and the Novantrone. My liver function tests and white counts were ok with just the Avonex for a very long time. Hope this helps you! May God Bless your decision! :bouncing:
Barbbelle
06-16-2005, 10:25 PM
Hi again! Forgot to tell you that I took Amantadine for fatigue and that has an anti-flu property to it. I never was sick while taking that.
I would just take one thing at a time and if you feel like your job is too much, you may be able to transfer to another department, etc. You don't have to do anything if you get on medication and everything settles down.
I would just take one thing at a time and if you feel like your job is too much, you may be able to transfer to another department, etc. You don't have to do anything if you get on medication and everything settles down.
Sharon Grace
06-17-2005, 04:37 AM
I started Avonex in 2001 and did really well on it until last year. I started to have some really bad attacks and my Doc switched me to Rebif which is a much higher dose. I recently saw the head of the MS program at Barrow Institute who said Rebif was the best. The sub-q shots are pretty easy but you must take aspirin/advil before you inject. The drugs do have side effects. Also, I highly recommend taking cranberry pills daily because being on these drugs can make you prone to urinary tract infections. Also, each of these drug companies has a great program where they call you monthly to see how you are doing and see if you have any questions. My Rebif rep calls me regularly to see how I'm doing and it's great. Best of luck with your therapy. Any questions, post another note here. Take care - Sharon Grace
gingypinge3
06-17-2005, 01:39 PM
Thank you Sharon..I really appreciate it
gingypinge3
06-17-2005, 01:41 PM
Thank you Barbelle..this information is a great help
Jewel2
06-17-2005, 03:48 PM
It always seems like I'm the negative person here, but I suppose my posts give another perspective.
My daughter did terribly on both the Avonex and Rebif. At the time, the biggest problem was very serious depression, to the point of being suicidal.
That aside, her doctor is now exploring the possibility that those drugs may have caused her to have liver problems. Her liver functions were as high as 800 at the time of her therapy, but now bounce anywhere from 150 to 450 on any given day. (I'm not sure what these numbers represent exactly, but you probably know.) She has been off these therapies for over one year now, but still has problems. Her liver gets swollen, inflamed and very tender to the touch.
Again, they're not sure this is being caused by her former use of Avonex and Rebif, but they are very suspicious.
From all I've read, the majority of people on these therapies will do fine, but there are always the exceptions. I would certainly recommend regular blood tests for liver function and WBC (another thing that was off for my daughter while on Copaxone).
Best wishes,
Julie
My daughter did terribly on both the Avonex and Rebif. At the time, the biggest problem was very serious depression, to the point of being suicidal.
That aside, her doctor is now exploring the possibility that those drugs may have caused her to have liver problems. Her liver functions were as high as 800 at the time of her therapy, but now bounce anywhere from 150 to 450 on any given day. (I'm not sure what these numbers represent exactly, but you probably know.) She has been off these therapies for over one year now, but still has problems. Her liver gets swollen, inflamed and very tender to the touch.
Again, they're not sure this is being caused by her former use of Avonex and Rebif, but they are very suspicious.
From all I've read, the majority of people on these therapies will do fine, but there are always the exceptions. I would certainly recommend regular blood tests for liver function and WBC (another thing that was off for my daughter while on Copaxone).
Best wishes,
Julie
KelliD
06-17-2005, 04:38 PM
Julie..I echo your sentiments about regular testing of liver function.I've been on Avonex for more than a year and when I began, my Neuro advised that regardless of which of the CRAB meds I chose to try, he would want blood tests every quarter to check my liver. Reactions/responses to the different meds are as different as every individual's experience with MS. I am so sorry your daughter has had problems....
Royal
06-18-2005, 10:50 PM
HI!
After looking at the data off and on for some time now I've come to the conclusion that all of the CRAB meds are about the same in terms of efficacy, maybe not for any one person but for a group they are. I know others will disagree with this and point to studies to back up their claim. However when looking at the totality of it I still believe they are all about the same.
I, myself, have been taking Avonex and have been doing so for nine years. I don't have any side effects to speak of and have remained stable with no attacks. I also like the convience of self-injecting (even though its intramuscular) once a week. One other thing. Prior to starting Avonex I tried Betaseron but had to quit after just a few doses due to really bad side effects. Others I know, however, I doing well on Betaseron.
Does all this mean I am recommending Avonex? not necessarily. You really have to carefully look at all the options before deciding. Of course, you can always switch if one doesn't work for you.
Best of luck in your treatment decision.
- Roy
After looking at the data off and on for some time now I've come to the conclusion that all of the CRAB meds are about the same in terms of efficacy, maybe not for any one person but for a group they are. I know others will disagree with this and point to studies to back up their claim. However when looking at the totality of it I still believe they are all about the same.
I, myself, have been taking Avonex and have been doing so for nine years. I don't have any side effects to speak of and have remained stable with no attacks. I also like the convience of self-injecting (even though its intramuscular) once a week. One other thing. Prior to starting Avonex I tried Betaseron but had to quit after just a few doses due to really bad side effects. Others I know, however, I doing well on Betaseron.
Does all this mean I am recommending Avonex? not necessarily. You really have to carefully look at all the options before deciding. Of course, you can always switch if one doesn't work for you.
Best of luck in your treatment decision.
- Roy
dwgraham
06-21-2005, 04:09 PM
I have been on Rebif for a year now. No real problems, make sure you take the asprin/advil prior. I also use a chillow , It is a pillow that holds water and reduces night sweats that i got in the beginning. You can find the chilow with an online search. I really like the convience of the Rebif. If you forget a day you can take it the next day. Then a again every other day until oyu get back on your schedule. Makes it great. I take the injections every Sun, Tuesday and Thursday. I would rather feel bad at work than the weekend. I have had no problem with flu or infections.
Doug
Doug