Hair Loss On Avonex Anyone???

[Erin0313]

  Hi everyone! Sorry I haven't been around much. I hope that you are all well.

  I started Avonex injections 3 weeks ago (tomorrow will be injection #4) and I am losing hair by the handful! I know that it might sound vain worrying about my hair when there is so many bigger problems to worry about but I don't want to be bald on top of everything else.

Anyone with advice or have the same problem???

Thanks,
Erin :)

[Erin0313]

   Hi! I am sorry for all of you that are also suffering hair loss. As if we don't have enough to deal with!
  My family thought that I was making a big deal out of nothing until I washed my hair and ran my hands through and came away with a full hand of hair. We are not talking your usual hair loss here!
I asked the Biogen Nurse when she called last week to check on me and my Avonex shots about the connection to hair loss & she did say that in trials the Avonex users reported significant hair loss 4% more than the placebo group. Her advice was to use gentle shampoo and don't brush hard. Well duh!!!!
  I guess that we have to decide whether or not the treatment is helping the big things and is worth the hair loss. The jury is still out for me. I will let my MRI in September decide if I have stopped progressing. If so, there are always wigs.

Hugs,
Erin :)

[Polina67]

Hi to all,

I have been and now I am on interferon beta no hair lose, but I am on CellCept in the same time and I have hair falling off a a lot.

[calamj]

I have been on avonex for 10 years and slowly but surely my hair has been falling off. I am thinking of getting off of it for a while. I asked my Dr about it 3 years ago at the time she said she had heard nothing about it. I will  ask someone at the MS center maybe they can tell me something.Anyway 10 years ago my hair was below my shoulders today it is slightly below my ear.

[Polina67]

Hi to all

I have been on Rebif twice and its not affecting the hair, but then my doctor prescribe me CellCept and then it started, the hair start to fall.

[Erin0313]

Well gosh that doesn't sound promising!! I was on this great headache medicine (can't remember the name, sorry) and it made my hair fall out in handfuls. I was to the point of trying on my Aunts wigs and thought no way am I ready to wear one so I opted to go off of it and try something else.

Interferons seem to be my best option for a DMD since I failed on the Copaxone but I have to say that losing my hair already has me upset.

Quix how is your hair now? Can you see your scalp? I feel I need to repeat myself and say that I know I have bigger issues than hair loss but darn it it just *****!

sllowe sweetie I think Quix pretty much just confirmed that the DMD is the cause so if you find scoop please share :)

I think I will call the doctor next week and see if she has any ideas from other patients. If so I will share them with my balding friends, ha ha.

Thanks for sharing ladies & take care

Hugs,
Erin :)

[Quixotic1]

After being on Avonex for over a year my hair began to fall out by the handfulls.  My sclap became apparent all over.  Also, my scalp showed through.  :))

I'm not sure if it was related to the Interferon or not, but it was a mess!  It stopped after a while.

Q

[sllowe]

Hi Erin,

Mine is definitely thinner since being on an interferon.  I read it does happen but I'm not recalling the source right now.  We've talked about it here before too so I'll see what I can dig up for us

To be on the safe side thoughyou can have your Dr. add thyroid labs to the liver enzyme and CBC when ordered. Maybe the Dr. will order it in the 1st place, but I had to ask so thought it was worth a mention.  

Hope it subsides as you adjust (if it's related to dmd)....

[Heather3418]

that's FORGIVE...Geeesshhh!

[Heather3418]

Fortive the typo's.  Brain blurrrrrr

[Heather3418]

Hi Erin,

I did have some hair loss in the very front when I was on Avonex.  I really didn't know whether to had to do with genetics or getting older.  I never thought it could have been Avonex.  But I guess that it's possible.

Since I am adopted, I do not know much about my family history, but I am beginning to believe that the thinning of my hair above the forehead is probably genetics.  I have been off of Avonex for several years now and I still have a very thin spot in the same place.

I would asked the drug company about this or your doctor.  They do make products for women now, that may help with the thinning hair.  Rogaine is one that comes to mind.  It's an over the counter product.  I have not used it, because I heard that you may get some hair growth back, but if you stop using it, it falls right back out.

This can be an embarrassing problem for a woman.  Yes, guys I know it is for you too.  I'm sorry.

Please let me know what you find out Erin.

Big Hugs,
Heather