This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi all,
I've been on Rebif since Dec last year and I have been experiencing a lot of droppage of hair recently and the rate & the amount of hair that is dropping is quite alarming to me. Never experiencing this LOTS of hair falling off frm my head before. I've asked my doctor if this might be a side-effect of rebif and his answer was that this kind of side-effect has been reported before but its one of the less common side effects but it should improve with time as the body adjusts to the medicine. He told me to monitor it for a while, if it still persists, maybe he can reduce my dose a little and see if I still get it. He also mention that prednisolone may also add on to the hairloss.
Has anyone experience this before.... This has been bothering me for sometime.....

Hi Siren,
You went on Rebif Dec 2004 or Dec 2003? I ask because I had some hair loss for several months after starting on Rebif but it seems to have subsided now. I also had a lot of nail breakage and splitting, which has continued. I took a selenium supplement for a while, as I heard that might help with the hair loss (and isn't bad for the nervous system, either), but I can't say I saw a difference from that. Another thing to think about is that stress can cause hair loss.

Hi Carolsue,

Actually I am on Rebif since 25 Jun 2004 on the 44 mg dose. I have just called my doctor and voiced to him my concern again. He is now getting me to try the 22 mg dose for a month and then he said that he will switch back to the 44 if the hair loss subside... I'm feeling down wif all these happening to me...lately been feeling down quite alot...I guess it's the works of the Rebif or the MS as well...... ......

opppss...made an error ..was on Rebif since 25 Jan 2005....

siren,
Sounds like your hair loss could be due to a combination of the prednisone, stress, and rebif. The advice to go back to a 22mcg dose sounds good. Your body may need more time to adjust to Rebif. Make sure you are having your blood tested regularly (every 3 months or so) because, for example, thyroid problems can lead to hair loss, and Rebif can affect the thyroid.

Hang in there! You're not alone in this (although in singapore, maybe you feel that way?). I think a certain amount of depression is a normal part of getting used to having a disease like MS. But you may be feeling more depressed due to one of Rebif's side effects. If so, you might ask your doctor about anti-depressant medication.

carolsue

Hello, I am new to MS and to Rebif. 3 months ago, I was carted out of work. I got not one, but TWO rounds of 5 days/1000 mg /day prednisone within a month. I am in my 2nd month of Rebif therapy. So far, no real side effects, one minor reddening of an injection site, and that's it.

EXCEPT... I have a lot more hair falling out than usual. It comes out in small clusters of strands after washing it. Is this likely to be Rebif, or from having two prednisone fests in a month? Not that I will quit it. I would rather be bald and able to speak and swallow, not to mention being able to sit up and roll over. I dont care if I do look like Uncle Fester without hair.

Triara,
I can't answer that, but can tell you that I just went through a couple weeks where I had more hair loss than usual. It reminded me of what happened shortly after I went on rebif. The only thing I can think of that changed recently was that I'd recently run out of my vitamin E supplement and it took me a couple weeks to buy some more. I must say that now that I'm taking the E again, the hair loss seems to have subsided, but this could be mere coincidence.

I don't think you have to worry about looking like uncle fester!

here's to hoping you don't ever have another bout like the one 3 months ago.

carolsue

I will try getting some vitamin E. I hope it helps. Thanks for the suggestion.

I noticed a lot of hair loss in August, which was the 4rth month I was on Rebif. I have curly hair and don't usually use brushes but when I would shower, the amount of hair I was losing seemed greater. It was also extremely hot in the month of August and I'm wondering if that had anything to do with the amount of hair I was losing.

I am still losing a lot, but I think it may be slowing. It's so hard to tell. Having this disease makes me paranoid about everything.

Hi,

I've been on Rebif since February 2 of this year when I started the titration pack, so I guess I've been on the full 44mg dose for about six months. I have noticed some hair loss beyond what I would normally expect when washing my hair. Also, hair seems to grow slower than it used to.

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RRMS since 01/07.

Hi,

I'm on Rebif since March 2007 (Rebif44 since April). In the past three months I also lost more hair than usual... It is a interferon side effect, not very common, but in the german MS-boards a lot of rebif-users report hair loss. Usually it stops after a few months.

Sandrine

Hi Guys

Excuse me for butting in on the Rebif board- I am on Avonex - same drug, but different dose and method of administration...!

I also got a lot of hairloss, though - i started Avonex in Feb 2007 and started to get the hairloss around May 2007 - it got so thin, I went from hair half way down my back to chopping it off just above the shoulders, as it looked so straggly and bad!

It seems to have settled in the last month or two, and I am seeing lots of new hair growth (verrified by my hairdresser!), so I hopeful it has passed - it can be very demoralising.

I just thought that I should add a post as although this is said to be a "rare" side effect, I have come accross quite a few people who have experienced it, and it seems common to both Rebif and Avonex - I wonder if the Betaseron folks also get it?

All the best & hope it stops soon.

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Al

I was only on Rebif for about 3 months when my neuro took me off of it because of liver levels (anyone else?) and now my hair is half of what it was. It comes out in clumps sometimes. Being a 20 year old female, it's not a great thing to see.

Edit: I asked my neuro about it, and he said it's from my depakote (I also have epilepsy).

I am sorry about before I hit submit to fast. I have been on rebif since 2002 . I have noticed hair coming out before pretty bad. I was not to worried untill today . I noticed I am losing it from the top of my head. So I am sort of scared. I think tommorrow morning I am going to contact my nerologist to tell her what is going on. I am in my mid 3os. I don't want to have to get a wig from losing hair from taking Rebif. I proberly need to lower my dose. I am on the 4. dose right now. I am glad I looked up this site and found it.
Shaunee

I've been diagnosed with MS since Jan 2004 and have been taking Rebif since about March 2004. The issues of hair loss have been a problem for me but it tends to subside. As of right now yes I am experiencing it again and I believe it has to do with how you are feeling metally and physically. Yes, the medication probably has a big part of it, but I have been depressed even before I was diagnosed with other reasons and this had just put more on top of it and not to mention that I went through nursing school----I luv when doctors say to be careful with stress----yea right!! So, I did get advise from my doctor and she told me to try taking folic acid. I did and it did help. I am about to go back to the store to buy some more. Also, it can't hurt anyways because for most of you I know you are women and folic acid is good for all of us--especially of childbearing age. So, it's good for two things and it can't hurt