Monday, May 28, 2012

Switching meds...

By karen Monday, June 08, 2009

I have been taking Avonex for around three months and I am starting to think it is going to "ruin" my life. I am seriously thinking about either switching to another med. or going it alone(with no meds) for awhile and see what happens. I take my Avonex injection on Friday night and through the night the nasty headache starts and by Sat. I can do nothing but stay in bed b/c of muscle aches, nausea, and extreme exhaustion. The rest of the week I feel flu like off and on then by Thurs. I feel great. Then its Friday and time to start the cycle all over again! Okay so I have been dealing with all this and Ive learned to cope BUT more recently Ive noticed alot of hair in my shower and in my comb and all over and though Im not balding YET and noone seems to notice yet my hair is getting thinner. I researched this and to my horror found this can be a side effect of the Avonex. I am not a extremely vain person but if I loose my hair.....well I just think that may put me over the edge!!!! I am newly dx'd and I think I have handled the things that have been happening to me due to this nasty MS fairly well but this may be more then I can handle. So I am really thinking about stopping the Avonex. I really would like to know of others who have had negative side effects from Avonex that made them stop taking it. Any others with hair loss?? Also Id be happy to hear from those of ou who are on different meds, and how are the side effects?? And any of you not taking meds, how are you doing? Do you have alot of "relapses'? I really appreciate any feedback..What better advice could I possibly get then from people who have been there, done that!!! Thanks

Karen

Has anyone stopped taking Avonex
6/ 9/09 7:15am

Karen, I take Beta, and have taken it since 2004 since I was DX.  Now it has worked for me.  I inject every other day, so far no balding, at first it did casue chills, but I would take Tyl. before I would inject, no problem, now I have no chills at all.  I love it, and no new scaring.  So it works for me.  Sherry/smomdukesKiss

6/ 9/09 9:33pm

Thanks so much for the feedback. I am hoping to make a good choice and hearing what others have experienced will be very helpful!

9/12/09 4:37pm

HI KAREN,

 WE HOPE YOU THINK HARD ON THIS AND MAKE THE RIGHT CHOICE FOR YOU. GEORGE THINKS HE HAS MADE THE RIGHT CHOICE FOR HIS SELF. LET US KNOW HOW YOU MAKE OUT AND GOD BLESS YOUKiss GEORGE & BARB!!!!!!

                          YOU ARE IN OUR PRAYERS FOR THE RIGHT CHOICE.

9/12/09 7:21pm

Thanks for the advice!!!! I appreciate the thoughts and prayers as well. Smilekaren

9/13/09 11:03pm

 

HI KAREN,

 LET ME KNOW HOW YOU MAKE OUT I  WOULD BE VERY INTERSTED IN YOUR SUCCESS.

OUR THOUGHTS AND PRAYERS ARE WITH YOU. IF YOU KNOW A SITE FOR PARKINSON & DAYTIME SLEEPINESS, THIS IS WHAT MY WIFE HAS BEEN DIAGNOSED WITH WE WOULD BE VERY GREATFUL. THANK YOU AND GOD BLESS Smile!!!!!

                                                                            GEORGE & BARB

9/14/09 8:41pm

Thankyou for the thoughts and prayers!! Mine are with you as well...That is so sad that you and your wife both have to deal with such devastating diseases. I dont know of any sites for parkinsons or daytime sleepiness but im sure if you google it you will get lots of leads. Good luck!I will keep you posted.

Karen

Anonymous
MS in Indiana
6/10/09 9:25pm

I was diagnosed with MS in 1999 and started therapy with Avonex in December of that year. Initially I had bad days following my injection, but my body seemed to adjust and I did not have disruptive day-after flu-like symptoms.

 

Then there came a time (later, but I do not recall the date/year) when the day-after injection symptoms became worse than ever. I wondered if I should just stop the Avonex injections.

 

The long & short of it was that when Avonex came out with pre-filled syringes I had "automatically" been switched to the pre-mixed/pre-filled syringes. After talking with someone with Biogen's support team I learned that some folks do much better with the "original" formula that needs to be reconstituted. Apparently I am among that number because I once again do fairly well with the injections and Advil seems to help me avoid any side effects.

 

As far as stopping Avonex-- I've thought about that because of the cost, the possible side effects, and simply the inconvenience of getting IM injections every week. But I concluded that, although I wish I did not need the Avonex, in 10 years I have experienced infrequent exacerbations and overall my MS has been slow in progression with Avonex-- I am not sure I want to think about where I might be without it. 

 

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By karen— Last Modified: 12/26/10, First Published: 06/08/09