@michael

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michael

Aubagio and hair loss

I am starting on Aubagio tomorrow and wanted to ask peoples experience? I took Avonex for 10 years, ( luckily no progression? Just hated injecting myself so am giving Aubagio a go. My main concern is the hair loss, how thin does it get, I'm 40 and proud to have thick hair, sorry if that sounds vain.

spunky

@spunky

Hi @michael I have been on Aubagio for 1.5 years and love it now as I have shown no MS progression and I have no side effects from the drug. BUT I did have the hair thinning from months 4-7 where my hair definitely did thin a lot (I noticed but no one else did). All of my hair has grown back but it was a rough couple of months as I saw my hair fall to the floor. My Neuro said that every patient he had on Aubagio experienced some hair loss; it just depended on the severity of it. Good luck and I hope Aubagio works for you! Spunky

michael

@michael

Thanks Spunky, great that you've shown no progression. The hair loss is my biggest fear TBH, I will be starting tomorrow and not looking forward to it.

spunky

@spunky

@michael how are you doing on Aubagio?

gemmat2014

@gemmat2014

@michael I started on aubagio Tues this week so you are abit further into it than me how are you finding it,day two the night time I seemed very bloated and started feeling nauseous but nothing other than that really to report. Aslong as it passes over time I can live with it. Abit nervous about the hair thinning as I have thin hair to begin with so will see how it goes really. Be nice to hear how you are doing it since you are a month ahead of me,I have been on Copaxone, tecfidera and Plegridy so far just hoping I find that this one suits me better. My tummy was abit upset this morning gurgling etc but other than that it seems to have settled again. Or anyone else please share how you are getting on with it. I have had no relapses since being diagnosed 5years ago so I am really lucky but know something might be round the corner. Does anyone know how long is generally the longest you will go without a relapse I know everyone's ms is different but it's very strange I havnt had anything significant in this time of 5years....I'm definitely not complaining. I get very tired but that's about it. I had a recent MRI with contrast which showed no active disease activity either.

michael

@michael

Hi @spunky, Sorry for the slow responses, I have been overseas and just getting round to responding to everyone. I'm going well, I have suffered any side effects per se, although I have noticed a few more hairs coming out when I brush my hair, maybe 4 or 5 every day and my hair does look a bit thinner. But that could be me, I have never really look to see whether I'm "thinning", I am 40 after all :) I am looking forward to my MRI in a few months, hopefully there will be no more activity!! Thanks for getting in touch, I really appreciate it

michael

@michael

Hi @gemmat2014, Sorry for the slow responses, I have been overseas and just getting round to responding to everyone. Please see my responses to @spunky above. Touch wood, I'm going well, I haven't suffered any bloatedness or nausea yet, I hope I have missed that part!! I have started noticing a few more hairs (4 or 5 per day) coming out when I am combing my hair in the morning, I have quite thick hair so not really noticeable to other people. I haven't had a relapse in over 10 years, I was on avonex for most of that time with no new legions. I hated the injections though so stopped for a year to see what happened. A couple of new legions showed on my last MRI so my Neuro said I had to start medication again :( I decided on Aubagio as it was pill form. Fingers crossed my next MRI is good. How are you going?

andreim

@andreim

Hi! I have 5 months to follow Aubagio. I have no problems with hair loss, but from time to time some bruises appear on my skin, but nothing serious.

michael

@michael

Thanks @andrei-m

gemmat2014

@gemmat2014

Hi @michael I'm doing well on the aubagio wouldn't even know I'm taking anything to be honest I had a slightly dodgy tummy first few days or so but everything seems fine now. I haven't noticed any difference in my hair loss yet but I lose loads anyway my hair is very thin to begin with. I will see how it goes but touch wood so far so good. I am really tired ATM though assuming it's a ms thing but I fall asleep about 7:30-8pm most nights when I take my 4 yo son upto bed it might only be for an hour or two but I feel like I never see my partner,but on the other hand he doesn't wake me up either.... Haha I just feel like I should have more go in me at 33years old than I do. I fall asleep on the sofa every single night aswell once I go downstairs it's so bloody annoying but rant over how is everything now with you? thanks for your reply and anyone else let me know if you have any answers on energy and how to get more haha

Bobbij

@Bobbij

@michael, I have been on Aubagio for two months now only side effect hair thinning my nuroligist says it should only last about four months, hopefully 🙂

Lou2001

@Lou2001

I have to be honest as I think thats what you want here. Aubagio damn near killed me. I became anemic lost 40lbs in 6 months.. soooo much hairloss and more relapses in the months following than I had in total the previous 16 yrs. After 18 months on it we had to take me off of it. I have been off it for 2 years now and within 18 months I have 6 new lesions. My nerologist wont admit it but I kmow he agrees with me that the aubagio progressed me from RRMS to SPMS. You can pm me amd I will show you some before during amd after aubagio pictures of me.

JacquiMartin

@JacquiMartin

Hi there! I had hair loss on both Aubagio and Tecfidera for the first three months or so, I believe it is perfectly normal. I used a shampoo with Biotin in to make it appear fuller. Good luck, hope the Aubagio works out for you.