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Question:
I was recently diagnosed with R/R MS and began taking Tecfidera on 03/31/15. On 04/20/15 I started to notice hair loss which continues each time I wash my hair. I know it is not listed as a side effect however there have been no other changes to my routine or diet other than the Tecfidera. I see numerous comments on the MS Connection website about other MS patients with hair loss attributed to Tecfidera which caused them to stop taking it, including a concerning comment that the hair did not seem to regrow once the drug was stopped. My questions are, have you had other patients report hair loss with Tecfidera? If so did the hair loss subside with time or do you believe that this is a side effect that would typically subside with time? If so how long is reasonable to wait and see? If the hair loss does not subside and I stop the medication, would the hair loss typically regrow or would the hair lost potentially be permanent? Lastly, my second choice for medication was Copaxone, which also does not list hair loss as a side effect however I saw MS Connection comments regarding hair loss with this drug as well. I would hate to stop the Tecfidera only to find the same problem with Copaxone. Do all MS drugs have the potential to cause hair loss or is it perhaps caused by the MS itself? Any advice is greatly appreciated. Answer: Hair loss is a common concern expressed by many people when they visit their doctor. Unless your hair is falling off in massive amounts and leaving large patches of bald skin, as occurs after many forms of chemotherapy and called anagenic effluvium, you are likely experiencing a condition called Telogen Effluvium. To understand this better you need to know a little about the normal hair growth cycle. In most people 80-90 % of hair follicles are in an active growth stage (called the anagenic stage) and the rest are in a resting stage (called the Telogen phase) getting ready to fall off and make way for new growth. Any number of events including post emotional stressors, diet changes, hormonal changes, post partum, nutrient deficiencies, medical conditions (esp. thyroid disorders) and many medications can push a greater number of hair follicles suddenly into the Telogen phase. Interestingly, the hair does not immediately fall out when this occurs; instead, the hair follicle stops growing and involutes over 2 to 4 months before it falls out. The loss of hair or hair thinning is usually complete within 6 to 9 months after the condition that caused you to experience Telogen Effluvium. As soon as a hair falls off the new hair follicle begins to grow, but it takes months before this becomes noticeable. People with telogen effluvium will notice more hair on their brush and their pillow in the morning and the hair. A typical person will lose about 100 hairs per day whereas a person with telogen effluvium will lose 300-500 hairs a day. The hairs that you collect will have the typical appearance of a hair that has gone through the telogen phase. Most noticeable, is the small white hub at the end of the hair that was attached to the scalp. It is most important to understand that Telogen Effluvium is almost always a temporary condition though it takes time to recover. Let’s return now to your question. You started Tecfidera on 3/31/15 and began to notice hair loss 20 days later. Telogenic Effluvium that begins this rapidly would also be expected to recover within 6 months, often without even stopping the medication. This is certainly the case with Teriflunomide. It is more typical for the hair loss to only become noticeable 2-4 months after the onset of the causative event, and then continue unless the offending condition is reversed or stopped. It is impossible for me to determine if there is a causal link between the initiation of treatment with Tecfidera and hair thinning. We can only determine cause and effect from placebo controlled trials and this was not an observed side effect attributable to Tecfidera in clinical trials. If your hair loss is severe and bothersome to you then you have a number of choices. First, ask your doctor if there are other potential causes of hair loss. For instance, antidepressants or recent stressors are common causes. If there no other identifiable causes you have some choices to make: 1. If your doctor thinks you are a good candidate for minoxidil, you can continue on Tecfidera, and take minoxidil for the next 6 months to stimulate hair growth. 2. You can stop Tecfidera and take another medication for your MS but don’t expect the hair loss to stop until it has run it’s course. I hope this helps. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego
Karin Johnson
5/10/2015 09:32:51 am
Thank you Dr Revere. My initial MS diagnosis and symptoms which lasted 5-6 weeks falls into the 2-4 month time frame that you indicated is most common for hair loss onset after a causative event. It is a relief to have this information on Telogen Effluvium and I will stick it out with the Tecfidera and hope the hair loss will soon run it's course. 6/26/2016 09:54:33 pm
I have ms it seems my symptoms are causing hair loss and painful irritated scalp am very depressed about this please help me find a solution.this is my very first comment.where is the duplicate comment? 4/10/2017 09:45:05 pm
I am 2 years post Tecfidera. My hair loss was very gradual. Even after stopping the med my hair thinned. My hairline was nearly 1 inch gone. My regrowth hair is now very noticeable. I had thick long hair and it was diminished to thin hair. Now all regrowth is sticking up no matter how it is dried, styled, etc. I am very upset about this about and continue to be especially that this is NOT on the label anywhere. The doctors also ignore the fact and after battery of normal tests they will not admit this was from Tecfidera. If anyone wants to do something as a group I think you should consider getting in touch with me.
Debra Campbell
6/4/2017 08:47:45 pm
I am I was not told my hair is thining and I'm very depressed if gets any worse I will be ashame to face people on my job I very self contiguous
Wendy
8/25/2019 01:06:20 am
Hi, I was diagnosed with RR MS is October last year (2018) and started taking Tecfidera in November last year. I'd been having symptoms for the last 10 years (unbeknown to be that is was MS!) Since taking Tecfidera my hair has fallen out dramatically. I've always had very thick curly hair & never had any issues with my hair (apart from the fact it was too thick sometimes....lol ) but now I've lost I'd say at least half of my hair. Doctors say that this is probably not related to taking Tecfidera but it's too much of a coincidence that I've never had any issues with my hair, until I started taking Tecfidera. I got in touch with Biogen (manufacturers of Tecfidera) & the woman i spoke to was very helpful, although did say that they've never had a complaint from anyone regarding hair loss. Now, I've checked these online forums and there are loads of woman who seem to be experiencing the same symptoms but are possibly not reporting it. I can't urge you enough to get in touch with Biogen and advise them of your hair issues. My complaint is being passed to their Safety Department but they will need more than just my complaint for them to look into it. Please please get in touch with them and hopefully it will help stop, if not us losing our hair, then people in the future being diagnosed with MS & taking Tecfidera.
Wendy
8/8/2016 01:53:42 am
Hi, I have been taking tecfidera for 11 months now and have noticed my hair has become really thin! It has become more noticible recently and hair fall has been happening throughout! I have been taking hair vitamins since I started taking tecfidera as I read that people had experienced this as a side effect so I thought that this might help to combat this! My hair used to be thick and shiny but now has no life to it and gets tangled all the time! When I asked my ms nurse she said that this is not the cause of tecfidera and I should be grateful. I am grateful but at 33 I do not want to loose all my hair!
lisa
8/21/2016 07:13:34 am
I am experiencing the same exact hair loss!! I was diagnosed at 18 & now I am 34. I have been on the medication for a year now. My eyelash hairs & scalp hair is falling out. In which I am freaking out! The medication works as far as MS is concern. Hait loss is defiantly THERE.
Wendy
8/25/2019 09:11:26 am
Hi, I know I have been told the same thing, not related to Tecfidera. Would you be willing to get in touch with BIOGEN (manufacturer of Tecfidera) to advise them of this. The only way they would be willing to listen is if they know its not just me who is experiencing hair loss & there are others out there. We have enough to deal with without having to worry about hair loss too!! It cant be anything else as I've never been on medication (managed most of my life to be healthy enough) until 45, so not too bad, but whenever I started it, my hair started falling out. My eyelashes (on my right eye only) also fall out but this isnt anything to do with Tecfidera as this happens every so often and way before I started taking the medicatHi, I know I have been told the same thing, not related to Tecfidera. Would you be willing to get in touch with BIOGEN (manufacturer of Tecfidera) to advise them of this. The only way they would be willing to listen is if they know its not just me who is experiencing hair loss & there are others out there. We have enough to deal with without having to worry about hair loss too!! It cant be anything else as I've never been on medication (managed most of my life to be healthy enough) until 45, so not too bad, but whenever I started it, my hair started falling out. My eyelashes (on my right eye only) also fall out but this isnt anything to do with Tecfidera as this happens every so often and way before I started taking the medication. I would ask most women on here to let BIOGEN know about their hair loss !!! . I would ask most woman on here to let BIOGEN know about their hair loss !!!
Amanda
8/27/2016 05:47:07 pm
I'm 33 as well almost done with my 2nd month of Tecfidera and I don't recognize my hair anymore. I never had super thick hair but it was shiny and styleable. Now it is dull and even thinner than before. I was on Copaxone before (diagnosed in 2011) but hated the lipoatrophy that came with the injections. I don't know what's worse for a woman: thinning hair or dimples everywhere! I feel like I'm stuck
Wendy
8/25/2019 09:15:21 am
I know what you mean. I've been on it for 9 months now and dont recognise my own hair now. It's now frizzy, thin and dry, my hair has never been like that ! It's such a thing to deal with when you're used to having nice hair eh. I can advise that I have been in touch with BIOGEN who are the company who manufacture Tecfidera who said that they're never had any complaints about hair loss, so maybe if all the woman on here advise them of this problem, they would look into doing something about it. They did say that they would pass it to their Safety Department. Like you say the medication is doing well for the MS but not so good for other stuff !!!
Wendy Khan
8/25/2019 09:10:43 am
Hi, I know I have been told the same thing, not related to Tecfidera. Would you be willing to get in touch with BIOGEN (manufacturer of Tecfidera) to advise them of this. The only way they would be willing to listen is if they know its not just me who is experiencing hair loss & there are others out there. We have enough to deal with without having to worry about hair loss too!! It cant be anything else as I've never been on medication (managed most of my life to be healthy enough) until 45, so not too bad, but whenever I started it, my hair started falling out. My eyelashes (on my right eye only) also fall out but this isnt anything to do with Tecfidera as this happens every so often and way before I started taking the medicatHi, I know I have been told the same thing, not related to Tecfidera. Would you be willing to get in touch with BIOGEN (manufacturer of Tecfidera) to advise them of this. The only way they would be willing to listen is if they know its not just me who is experiencing hair loss & there are others out there. We have enough to deal with without having to worry about hair loss too!! It cant be anything else as I've never been on medication (managed most of my life to be healthy enough) until 45, so not too bad, but whenever I started it, my hair started falling out. My eyelashes (on my right eye only) also fall out but this isnt anything to do with Tecfidera as this happens every so often and way before I started taking the medication. I would ask most women on here to let BIOGEN know about their hair loss !!! ion. I would ask most women on here to let BIOGEN know about their hair loss !!!
Chris A
2/9/2017 12:21:28 am
I have been on twcfidera for almost 8 months now and have lost a good amount of hair, tothe point where I have to cut it completely off for it to grow back evenly. I never had this pronlem when I was using avonex and when I called the doctor to let her know she told me that its not a known symptom of tecfidera. I feel a little relief that I've come across this forum because this proves that its not just my imagination.
Lucy
8/22/2017 02:33:42 pm
I'm having the exact same problem, I came off Rebif due to lipoatrophy and have been on tecfidera for 2years now. From an MS perspective it's been amazing but my hair is now shocking! I had long blond hair and was often complimented on my hair until the past year in which it is now thin, breaking away and totally different lengths without being cut. I've tried every expensive shampoo and hair masks, I'm also now taking biotin but nothing appears to be working. I'm gutted but I can't see any other way other than to come off it but the thought of injections again makes me shiver as I don't have any injection sites left after 4 years of Rebif. I'm totally stuck :-(
Pete
1/2/2018 11:23:07 pm
I had both Massive Hair Loss AND Weight Loss when I took Tecfidera for about 16-18 Months. As soon as I went off of Tecfidera and went to the 40mg Copaxone, I put the weight back on...but the Hair never grew back since then (two (2) years). 3/29/2018 05:40:32 am
07/2017-I was told i no longer had any signs or symptoms of MS & could stop the Copaxone any time. I had been taking for 20+ yrs.I have been off of it since the. Now 03/2018 I am experiencing hair loss & hair thinning!! what a way to celebrate no more injections & the miracle of no more MS. What is the answer to keep hair after being on Copaxone for 20+ yrs.? 8/20/2018 07:36:15 pm
I was diagnosed with full blown MS in January of this year. My hair was already thinning before starting Aubagio in February 2018. I have expected a lot more hair loss & weight loss since starting Aubagio. I have had enough & called my doctor & requested a Plan B immediately. From reading your comments, almost every medication causes extensive hair loss. I’m really feeling discouraged!!!!
SystemE
9/15/2018 06:00:22 am
I am a woman. I was diagnosed with MS in June 2016 and started on Tecfidera. 12 months later I noticed I was losing a lot of hair. This continued, but I didn't see anyone about it until recently (2018), when I saw a dermatologist who said I had genetic androgenic alopecia. This is puzzling to me as no one in my family has ever had thinning hair, quite the opposite actually. I have always wondered if it could be a side effect of the Tecfidera and the replies on this post are making me wonder more. What can we do?
Lucy
9/15/2018 09:47:43 am
I wrote on here a year ago now and things are not any better with my hair loss and tecfidera! I’ve been popping the biotin on a daily basis but have no idea if it’s working or not as don’t know how bad my hair would be if I didn’t take it! I’ve had enough now and am looking to come off tecfiera for good which I’m hoping to do so in the next month, i’ll keep everyone posted with what happens to my hair and if it recovers (fingers crossed) x
Lucy
8/25/2019 03:12:26 am
A year later now and my consultant won’t change my meds so I’m still on the Tec, I can go back on injections but really don’t want to do that! I’m going to call and mention it to the drug manufacturer, I guess the more who report it the more chance the nurses and consultants will at least recognise it! I’ve been off it for the past three months as I was pregnant but unfortunately have miscarried so back on it again, my hair didn’t improve in the 3 months off it even with pregnancy hormones 😢 Comments are closed.
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