Xolair/omalizumab-hair Loss (Page 2)

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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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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Hi All
Update, now finishing up Xolair. I am at the 8 week between injections now and all my hair grew back and is still growing. I also feel good with no reoccurrence of symptoms. Please read previous chats for background. The lower dose (longer duration between shots) seemed to stop the side effects. Good luck.

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Yes I have! Got my first 2 shots June 24 & my hair has started falling out. How much hair loss should I expect? I'll be taking xolair shots monthly for 1yr.

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Hi Terrie. Beware of snake oil salesmen selling false hope. Redkin products are not bad but the ingredient in them is Rogaine (minoxidil). I certainly hope this is not a false response in order to sell products. Xolair causes some to shed hair approx. 2 weeks after their dose and if the drug builds up as explained in earlier posts the hair loss will continue. It is important to talk with your doctor about dosage and understand that the standard dose amount and frequency are not always the best for all people. The half life of the drug in the body is 26 days so if you get the full injection every month you will be effectively adding almost half again the dose above your injection amount every time. It is important you and your doctor talk about this. Good luck

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I lost half of the hair after the second xolair shot,600mg per shot
Is it possible?has it happened to anyone?
I'm crying....that's horrible...no doc told me about this side effect..

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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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wow 600mgs per injection is a lot. Don't know why they chose so much. At 300mgs every 4 weeks my hair started to fall out when the Xolair built up effectively doubling the dose every 26 days. I only could speculate that if I was to have had 600mgs every time it would have fallen out sooner. You can read the posts below and here the story but 300mgs every 4 weeks was too much and thru testing realized chronic anaphylactic delayed pressure Urticaria has been controlled completely with 300mgs of Xolair every 8 weeks with no noticeable side effects and normal hair growth. Talk to your doctor

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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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Hello
I hope hair will come back as before too,i heard by someone on the net we need at least 2 months to see improvements or new hair coming...for sure i stopped xolair,disnt work for my cholinergic hives.unbelievable that after 4 shots i'm half bald...it seems like a chemio they say...
Hope hope hope.

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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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Hello again Joe,

I read over your other blogs. After my first inj. of Xolair my hives went away and I was hive free for one week...but then they started to come back, not as bad as before but enough that I had to increase antihistamines until doctor had to put me on cyclosporine as well. After three inj's. I'm on both meds and still break through and taking Allegra and another antihistamine. I don't even know if the Xolair inj's. even work for me. How long were you on the Xolair 8week inj's... how many of those and are you still taking inj's. or are you off. Thank you!

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Hi Joe,

Yes you are right...hair is important to us. My problem is that the hives have not completely gone away even with both these meds. And I was only hive free for one week after first inj. with Xolair and am going in for my forth next week. After my third inj. doctor said she didn't think Xolair is working for me. I would hate to be taking a medicine that makes me lose hair if it's not working but now that I'm on cyclosporine I don't know what the next move is for the doctor. Maybe she can try to push back on the Xolair to 6 weeks to see if there is any change...? I'm so happy for you that your hair has come back......and relieved for all of us out there that are losing our hair. A light at the end of a tunnel! And encouraging that you are still getting inj's. and hair grew back.....gives us hope!

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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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I have had chronic hives for over 5 years and after going through many different medications the only relief I've gotten is with my monthly Xolair shots. I have been experiencing hair loss for the last 2 years and lately it has gotten much worse. If it comes down to having daily hives or hair loss, I'll get a good wig rather than the hives which are unbearable at times.

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Hi Joe
Well unfortunately after my forth Xolair injection...the hives have not improved so my doctor is taking me off the shots....very disappointed.......and concerned. As mentioned I am also on Cyclosporine and between the two drugs no improvement on my chronic idiopathic urticaria . I was due for my 5th shot thisThursday......my hair is still falling out and will probably happen for the next coming weeks unless the cyclosporine will cause that as well....I hope not. I just want to post and leave an update. I am happy for all that the Xolair is helping. This disease is truly horrible and very much affects quality of life. I hope one day there will be a cure for this. I wish you all well! Joe how are you doing now?

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Hi Wendy
I am sorry to hear that there is no relief for you with the Xolair. I really do not have any experience with Cyclosporine so I can only hope there is something there for you. It should take a couple of weeks for your hair to start to come back as the Xolair slowly fades from your system (26 day half-life). As for me the Xolair at 8 weeks seems to hold for now and no noticeable side effects. Be diligent with your doctor and hope you find some relief.

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Yes I have noticed my hair thinning with the Xolair shot!!

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Hi everyone! I was prescribed xolair for eczema and hay fever (my ige levels were close to 10,000). My shots were for 150 mgs every three to four weeks. First shot was on Sept 20th 2015. I think my hair started falling out right after the first shot but I never really noticed until after my third shot which was around Nov 14th 2015. I have a large bald patch now at the back of my head (near my right ear) and new bald spots around the top of my crown, one where my hairline starts and around the right temple. There is also defused thinning. I have been so distressed with all this as it has been a big shock. My dermatologist wanted me to get 6 shots in total but I have stopped after the third as the benefits don't really outweigh the ill effects in my case (I can live with hand eczema and hay fever but it's depressing to see myself going bald). Also my dermatologist refuses to believe that xolair has anything to do with my hair loss and has diagnosed me with alopecia areata. I am getting inj's. on my scalp to promote hair growth (for AA) and hope it all comes back. Going to start on Iron and Vitamin D supplements as my blood reports showed some deficiency in those.Feel very encouraged after reading Joe's posts. Thanx for the consistent updates Joe!

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Hello Divya I am sorry to here about your reaction to Xolair. I am still on Xolair 300mgs every eight weeks and likely will be on it for the foreseeable future. You seem to have read the old posts of how it quickly builds up in your system potentially doubling the dose if not allowed to be filtered out (26day half life) I have regrown my hair and it is of good quality rather than the straw-like it was while it was falling out. This was only achieved due to my Dr's acceptance to the side effects and willingness to allow me to tailor the dose to what works for me. As I have said before I do not know how the internal politics of a hospital work so I cannot explain the lack of willingness of your Dr. to qualify the side effects. If you do chose to stop the Xolair please be patient and allow an month or so for your hair to respond. Good luck and I hope the best for you.

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Hello, my daughter who is 23 had one injection of xolair at 150 mg. By the second week sh noticed significant hair loss. She has not received any other injection and continues to lose her hair. It has been almost 9 months since her injection and her hair loss is still hsppening. We hope it stops eventually but want more information and to know if this is permanent. She is also in nursing school so is under a lot of stress.

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