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jerbell
New Member


Date Joined Jan 2006
Total Posts : 2
   Posted 9/7/2006 3:03 PM (GMT -6)   
Hi,
 
My wife has been taking Avonex since Jan. '06 and recently she has really started to notice her hair falling out.  The Avonex machine data repeats that hair loss happened in 4% of the test patents.  She is very upset and considering switching to the dreaded daily shot.  Does anyone have any experience with hair loss while taking Avonex?  How did it progress, total baldness?  Any thoughts or recommendations would be very helpful.
 
Thanks,
 
Jerbel
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shellypoo
Veteran Member


Date Joined Dec 2005
Total Posts : 896
   Posted 9/7/2006 3:32 PM (GMT -6)   
Hi!
I have been on Avonex for almost 6 months.  I have not had any major hair loss. Occasionally I will notice more than normal but nothing major.  From what I've read, it is usually minor and transient.  You can call Avonex and they will talk to her about it and you need to mention it to her doc.
 
Remember that stress and other factors can cause you to lose hair, too!  Take care! :-)
Michelle ><>
 
Don't be so busy doing good
that you neglect to do what's right!

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Counting My Blessings
Regular Member


Date Joined Apr 2006
Total Posts : 53
   Posted 9/12/2006 12:15 PM (GMT -6)   
Gosh - I'm sorry she is having that side effect. I've been on Avonex since November of '05. My hair has thinned out but there have not been any major bald spots or clumps that came out. It's just thinner than it was before. I'm coming up on a year of being on Avonex and it hasn't gotten any worse. That's just my experience though. For what it's worth!

Karla:o)
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els
Veteran Member


Date Joined Oct 2005
Total Posts : 4016
   Posted 9/13/2006 6:53 AM (GMT -6)   

I too am sorry she is having that side effect...for females this can be very distressing.  I was on Avonex right after I was diagnosed from 9/01 until 3/03.  I too had some thinning of hair but it wasn’t a major amount or anything that I was overly concerned with.  I have always had a lot of hair anyway.  Back then, I was also on several other medications to help with symptoms of MS that could of been the cause of this...Neurontin, Topamax (which is known for some hair loss), Bacoloflin (sp?).  Or it could of been the combination of these...I would doubt it would lead to total baldness but if your concerns are of this level you can call the drug company who supplies it and pose these questions to them.

I assume the "dreaded daily shot" your referring to is Copaxone perhaps?  When I stopped taking the Avonex in 03' I went untreated for a year and half then went on Copaxone.  Yes, it is daily but it isn’t taken IM and I have found it has less side effects for me.  So it isn’t so bad, just remembering to do it everyday and getting into the routine of it.

 

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Knutzer
New Member


Date Joined Oct 2009
Total Posts : 3
   Posted 10/6/2009 12:12 PM (GMT -6)   
Hi Veteran member,

My wife is using AVONEX at this time as well and has noticed her hair thinning out. She, as you, is switching to COPAXONE in Jan.

My question to you, or anyone else that knows, will the hair loss reverse and begin to grow again when AVONEX use is halted???

Cheers
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Gretchen1
Veteran Member


Date Joined Jan 2007
Total Posts : 2500
   Posted 10/6/2009 7:06 PM (GMT -6)   
That is a good question.  I don't know the answer.  It does seem plausible that her hair would grow back.  I hope so!  Let us know how that goes and how the transition to copaxone works for her.  I wish her the best.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.

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Knutzer
New Member


Date Joined Oct 2009
Total Posts : 3
   Posted 10/7/2009 5:11 PM (GMT -6)   
Thanks for the good wishes. 
 
I will certainly let you all know if my wifes hair thickens again! We are certainly hoping so!!
 
Ciao...
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Gretchen1
Veteran Member


Date Joined Jan 2007
Total Posts : 2500
   Posted 10/7/2009 8:49 PM (GMT -6)   
We look forward to your future posts. 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.

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Knutzer
New Member


Date Joined Oct 2009
Total Posts : 3
   Posted 2/26/2010 8:34 AM (GMT -6)   
Hi again,

Wife just started with her first shot of COPAXONE last night. No major hiccups and that non IM shot is very nice. We used the injector which is a pretty cool gadget. Wife suffered no ill side affects with the shot and said she could not even tell I was shooting her up!

Now, to the crux of this string, will her hair growth return? Spoke with our Dr a whle back and she stated that she could see no reason why it should not as the affect of AVONEX was not a permanent one.

We shall see. I will assume we'll need 6 - 12 months at a minimum to see a difference.

Post Edited (Knutzer) : 3/1/2010 4:32:59 AM (GMT-7)

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njoyn34
New Member


Date Joined Mar 2010
Total Posts : 1
   Posted 3/9/2010 11:34 PM (GMT -6)   
I was diagnosed with MS in 2001 and initially I was on copaxone...but there were to problems one I just couldn't remember to take the shot daily and two I was having reactions at the injection site...I began taking Avonex in 2006 off and on and my hair has become very thin with brakage which causes me to have to wear my hair cut short...as I stated I have been on the Avonex on and off and I still have hair loss or breakage even when I'm not on therapy...from what I understand from the doctors MS in and of itself can be the cause of hair loss, thinning and breakage...MS is bad enough but hair breakage for women can be even more disappointing... I do however like the Avonex because it's only once a wk and it injects into the muscle so you have less pain at the injection site
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lgun
New Member


Date Joined May 2010
Total Posts : 1
   Posted 5/22/2010 8:45 AM (GMT -6)   
Hi i was diagnosed  with ms march of last year,currently on avonex very sad my hair has started to come out so bad i didn;t want to wash it. long black hair it got so bad that i cut it in short cut, cried and now i;m over it.ANY ONE ELSE HAVE THIS PROBLEM. confused
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michele17
New Member


Date Joined Jun 2009
Total Posts : 15
   Posted 5/22/2010 10:51 AM (GMT -6)   
Hi,
Good news! I was on Avonex from 2002-2009.
Had hair loss- diagnosed by Dermatologist- Switched to Copaxone-(due to increased seizures-not due to hair loss) Have had no hair loss with copaxone!
Do not love the daily shots, but you get used to it. Have no side effect other than some minor injection site reactions that can be easily dealt with.
On Copaxone eight months now. No flu reaction. Get your life back. Good luck to you.

Michele17
M.S., Epilepsy, Gerd
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ppm guy
New Member


Date Joined Apr 2010
Total Posts : 16
   Posted 5/23/2010 2:45 PM (GMT -6)   
hi, i was on avonex from 1998-2003. i have thick wavy hair. my hair thinned and became very straight my whole time on avonex. when i stopped using avonex, my hair returned to normal.           all the best  ppm guy
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