Xolair/omalizumab-hair Loss (Top voted first)

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I have been taking this medication for 5 month and I have experience a lot of hair loss. Spoke with a friend who is taking the medication as well and has experienced tremendous hair loss. She has used Redkin Hair Products, with good success, she has managed to recoup much of her hair. Has anyone else experienced hair loss?

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7

This is for everyone who has been experiencing hair loss...has anyone stopped xolair and continued to have hair loss. I participated in a study to help get xolai FDA approved for the treament of hives. I had 1 injection of 300mg of xolair in 2009 and didn't have any hair loss at the time. For approximately the past 6 months or so I have noticed that I have been losing alot of hair. Mostly in the shower but also when I brush my hair. I have also noticed that my hair appears more brittle. I am just wondering if this could be a long term side effect of xolair. As I am considering participating in another study I am very concerned that this side effect could be permanent and irreversible. What does everyone think?

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8

I too also have a lot of hair loss since I had Xolair injections. If I knew that the hair loss would be so bad I would not of agreed to the injections. I use to have a lot of wavy hair but now I'm losing more hair. The back of my head was completely bald. I was told I had alopecia areata. Now my hair is coming in very sparsely and new bald spots are appearing on both sides of my temples. I have to wear a wig to hide my hair loss. I hope there is something or someone to help me recoupe my hair loss.

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5

I have had severe hair loss since getting Xolair injections. I didn't know this was one of the side affects until it got so bad and i started checking the internet about it. I just hope it's not to late to grow it back. I have been getting injections since January of this year.

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6

I too have noticed severe hair loss - clumps in the shower - hair quality is very poor - I have thin hair, but used to have a lot of it - healthy and shiny. Now it is dry and brittle and not shiny at all. Blood tests were normal, no vitamin deficiencies. I have been on Medrol for almost 2 years, so that could be a part of it, but it has gotten worse since January, when I started the Xolair shots. My hair dresser said to wash less, try not to use heat appliances and no more highlights. I look like a sick rat! (but one that breathes better) What can be done???

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51

Was on Xolair injections for asthma for 3 months. Stopped because of significant hair loss. Docs keep saying that Xolair doesn't cause hairloss, says FDA doesn't report that. Total BS, because it definitely does....I've stopped the Xolair injections and my hair finally is growing back.

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19

Hi Sarah
To back up a little I am using Xolair for autoimmune Delayed Pressure Urticaria. My condition was severe enough to cause shock and hospitalization. The Xolair completely stopped this so I am a proponent of it. This was an investigational treatment when all else failed and we were only going to use it for six months. My hair started falling out at three months. I lost at least half of it everywhere over the next three months. Along with this my hair was very poor quality (like thin straw) and it did not seem to grow. At the six month mark I requested to go off the Xolair as planned but the doctor did not want me to. I don't know the internal politics of a hospital so I don't know why this was the case. I insisted so they agreed to start stretching out the time between injections until it reached eight weeks then stop. This effectively reduces the cumulative dose in my body and it would seem that my hair is not falling out now and actually growing. I do not know the dose you are on or the reason for it but mine was 300mg (two shots) every four weeks and I am on no other drug so Xolair is the only suspect. I will keep updates month to month.

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20

Yes, I have been taking 3 Xolair inj's. bi-weekly for 7 years and my hair started falling out about 5 years ago. Scalp was always very pink. I also have a wig now but decided to go off the Xolair 2 months ago because I am concerned about side effects with heart issues. FDA issued a black box warning regarding heart issues with Xolair last November and that was why I stopped the inj's. The hair loss has slowed down (what hair I have left) but my dr said the Xolair can remain in my body for up to a year, especially with the high dosage I was using. Believe this drug can be a double edged sword, gave me quality of life but at what cost.

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52

Yes, my name is Gloria and I had experienced hair loss under the treatment with xolair

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53

I went bald on my crown in 5 months after starting Xolair. I also developed asthma and I have non-stop nasal drainage for 5 days after the shot. I had to stop the shots.

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65

Good evening. My name is Christina and i was diagnosed with CIU w/acute angioedema almost 2 years ago. When the illness first attacked my body i no idea just what it would do to me. I spent hours and hours in Dr. Offices only to be told "your labs look well" however upon examining my body it was clear there something more sinister going on. After about a year of arguing with Doctor's, various Ambulance rides to the hospital due to anaphylaxis an ear nose and throat specialist ran a few simple blood tests and i was diagnosed with autoimmune CIU. The steroids i was being given were helpful but only for a short period of time. I was on an array of different types of medications hoping one of those would make me better. Then I found a Dr. whi specializes in this illness and came to find Xolair. I was petrified to take it due to some of the side effects but did it anyhow with hopes i could start to overcome this mess my immune system put me in. Shortly before starting it i was a prisoner in my own home. The heat gave me hives, the sun gave me hives, everything gave me hives. Before the onset of starting Xolair my quality of life sucked. I was worried about some of the side effects of it but was willing to try anytning if it meant staying iff steroids and away from hospitals. After well over 6+ months i started to see a difference. The ine drawback....my hair. It started falling out at an alarming rate. Clumps in the shower, my hairbrush had just as much if not more. I am in a year and a half later and im still losing my hair. Im suprised im not bald. My hair is incredibly thin and i am so thankful that i have curly hair because i let it get somewhat frizzy and hide the thinning. I have a neighbor that lives up around the corner to me. She has some issues with needing attention so she has stated on now 4 different occasions that she has cancer. She doesnt. Never has just likes the idea of sympothy. I've know her for well iver a decade. She recently had me shave her head (as she was insisting she was losing her hair to the 4th round of chemo) which she has never had. She went to a salon and begged them to shave her head and they refused. Im a hairdresser so i took a look at her hair. Its thinning some but is also much older than me. The back of her hair has thick grey curls. She threw her hair away for sympothy and here i am dreading washing my hair because i know whats going to happen. My hair is now so thin i dont really even need to brush it afterwards because i can run my hands through it. It frustrates me but at the same token i have been bive free for nearly a year. Sometimes you have to choose your battles. Id rather have thinning hair than covered in hives, swollen, and using at least 1 epi pen a week.
I am also on a slew of other medications but I can say i have found relief even if it means in nealry bald.

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1

I too have had hair loss. My hair is very thin now and I haven't touched a razor to my legs in months.

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2

yeah. I'm 16 and i have.

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9

I started taking xolair injections on may 27 of 2011 and stopped Aug 27 2011 I lost a lot of hair all at once which prompt me to stop the injections. I told my doctor about the loss and he said I should keep taking the injections and I should weight the loss vs my improvement with my asthma. I'm still losing a lot of hair some has come back in but i now have other bald spots coming to life.

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16

I have been taking omalizumab now for very nearly 2 years, over the last 3 months i have experienced gradual hair loss which seems to be getting worse, i have visited my G.P who has advised me it could be due to my injections of omalizumab. Has anyone stopped their treatment due to hair loss? as im seriously thinking about my options.

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18

Hi Joe, im starting to get patches of hair missing now which is causing me great concern. To what extent did your hair fall out? did your doctor advise reducing dose? My doctor thinks I should stick with the injections while we wait and see what happens but Im getting very concerned about the amount of hair loss im experiencing.

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21

Hi Irene. I researched Xolair and found out the half life of the drug in the body is 26days so if you do the math on that your Dr. is correct that it will be at least half a year for the level to decrease to a negligible amount and likely a year to be gone. I have been on 300mg per month for six months and now weaning off to 300mg every 8 weeks. My hair is growing now and I still feel great (remission) My joints still mildly hurt and the "silent reflux" has almost disappeared. The dose seems to accumulate in the body so at the high dose it sounds like you were on will require patience as it decreases it think. I do not know the reason for your injections and I am a proponent of Xolair (saved my life) so if you have to continue using it a reduced dose may be worth disusing with your Dr. Good luck

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26

Hi all, I got my second injection (600 mg) last week. My hair has been coming out in handfuls since a week after the first injection. I am receiving the injections due to severe urticaria that caused anaphylaxis more than ten times over a period of six months. Xolair is literally a life-saver for me, but at this rate I will be bald in less than a month. I am going to start shopping for wigs shortly, as my doctor does not advise stopping the injections any time soon. I'm not looking forward to the rest of this journey. Good luck to all of you. It's nice to know I'm not alone with this.

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28

Hi Joe, so you think that Xolair 300mg works well every 8 weeks and not have to do every 4 weeks as may be too much? I am going in for my forth shot on Thursday (4 week). I am also on cyclosporine!!! That medication as both hair loss and hair gain. After my shower this morning I could not believe all the hair that just easily fell out...so upsetting...all to keep these horrible hives away...THAT is bad enough! I have Chronic Idiopathic Urticaria.....effecting my immune system..probably do to stress. Unfortunately, this hair loss is not helping. Joe, please keep us advised on how you are doing. Is your hair growing back normally or different. I just pray that Hopefully when these drugs are out of my system that my hair will grow back. My doctor did not tell me of this side effect.......they must know especially with so many sharing on this blog. Thank you

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30

Hi Wendy
Please read the posts from the bottom of the page up for more info. Yes I started with 300mgs every 4 weeks and after the third injection my hair started falling out. It falls out everywhere we just see it on our heads the worst I always considered myself fortunate not to have had male pattern baldness so it was very disturbing to see it. I am now on Xolair 300mgs every 8 weeks and my hair has returned and grows normally. The side effect is in the very fine print from Genentech and I do not believe the Dr's are very aware of it. Cyclosporine may contribute but I have no experience in it as the Xolair is the only thing I use. If the Xolair has improved your condition maybe talk to your Dr. about backing the dose off until the symptoms start to reoccur (mine was at 12 weeks) and then base your treatment plan off that. People will say it is just hair but the mirror is our worst enemy and part of being healthy is feeling good about yourself, I hope you feel better

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33

Hi Wendy

After 15 years of this going thru all of the guesswork the dr's had and using virtually every antihist (H1,H2) even having a piece of muscle removed to test for disease the lase ditch effort was the Xolair. The first injection was on may 9th of 2014 and within 2 days it started to go away. The idea was to be on for only 6 months. So it was 300mgs every 4 weeks for six months and a lot of hair loss but full remission of the DPU. At that point we started to stretch out the dose to 5 weeks then 6 and so on until we were at 8 weeks then we would quit. Once the dose was at 6 weeks hair was returning joints did not hurt and ringing in ears was gone. After one full year on it we stopped and 12 weeks after the DPU came back. So once again went back on the shots but trying 300mgs every 8 weeks. I go in for my shot on Monday so 8 weeks appears to work. DPU is different than hives as it causes inflammation in all soft tissues in the body. It is an immune system reaction to stimulus created by exertion and pressure/trauma to the body. It was so bad It caused shock and required emergency room visits with epinephrine shots to stay alive. It was a living hell and I can only assume you are going thru something similar. I do not know if what you have is exactly the same or will respond to the Xolair in the same way but I have learned over the 15 years of hell that things are worth a try but once there is no benefit from them there is no point in using them. Maybe give it just a little longer (your hair will grow back, mine did) and truly see if it makes a difference and if not ask your dr about quitting it. I hope you feel better.

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