Sorry to use a thread for this...I know this question has been asked over and over on this board but this involves POST treatment. Amanda's hair started falling out about 11 months into treatment...Clumps in the shower and on the brush. Now, three weeks post treatment, it is still coming out full force. For a teenager this is very traumatic...She was absolutely hysterical this morning...She says she has hardly any hair left and didn't want to go to school. Can some of my post treatment friends please tell me when this normally stops so I can talk to her about it. The doctor couldn't give me a straight answer. I was thinking about calling Intermune today to see if they had any information for us. I don't want to sound shallow, but with all the other problems of this illness that Amanda is dealing with, this is just one more that she doesn't need...Please give me some of your experiences....
Also wanted to know if anyone knows if this is a normal occurance after treatment or could something else be going on? It has been three weeks now. Not sure how long it takes for the interferon to leave the body..??
From Janis. See towards the end where end of treatnment is addressed. Hope this helps a little. Sorry Amanda is having to deal with this too. She's a tough girl. Mike
Yes ladies it happens, to most of us on treatment. You will not go bald, it will just become somewhat thin. This started to happen to me in my 6th month of treatment. Also my hair was so dry, it seemed to never really get dirty. It does all grow back, it took mine about a year after I finished my treatment.
Hair loss is common with interferon. It is difficult to give you a exact percentage of patients who experience this problem but it is one of the side effects that I warn patients about. You also have to appreciate that the severity of this side effect varies enormously form patient to patient.
In my experience with hair loss (we use the term alopecia) associated with interferon or combination therapy, a couple of points stand out. One is that patients tend to feel their hair loss is more noticeable than individuals around them including me, the physician. In addition, the hair typically grows back. We often will evaluate our patients on interferon who have hair loss for thyroid dysfunction because thyroid problems are seen with interferon and they can cause hair loss. Finally, if patients are very bothered by the hair loss, I sometimes suggest they consider Rogaine (topical minoxidil) though I do not have evidence that this is effective.
Thinning hair or change in hair texture sometimes occurs. This may begin after the first few months of interferon therapy. It does not generally represent complete loss of hair, rather some people notice an increased amount of hair in the shower drain or loss while combing or brushing. Hair returns to normal after the course of interferon is discontinued. However, whatever part of hair loss in men is attributable to male pattern baldness is gone for good.
Some people experience hair loss as a side effect of interferon, but it doesn
Make sure it is not thyroid related. My hair loss also occurred mainly AFTER treatment - great clumps of it. It has never grown back. I am on thyroid supplements but they have not helped my hair. I dreaded washing my hair at the end. The worst for me was about two months after tx.
The hair will grow back but it takes awhile..... I felt like I was going bald but no-one else noticed... and when it grew it was VERY curley and still is after a year.... it seems I'm stuck with this hair...
Please tell Amanda that my hair too thinned out quite a bit the last 4-6 weeks of treatment and continued for 6-8 weeks AFTER treatment (ending in August 2003). It was unnerving but it is all growing back in full force and I have a bit of a punk look with all the new growth. My thyroid hung in there (barely)during treatment and that may have something to do with it too.
Good luck and I'll say a prayer for you and Amanda.
Does anyone have any knowledge of Chiropractic when on TX? I had a bad neck before and the TX has seemed to make the soreness worse. Wondering if it is unrealistic to expect Chiro. ajustments, gadits like tens and wave table to help. Or could it hurt?? I was sore before I went and still sore after. Just trying to find an alternative to tylenol for aches and pains. Thanks for any info.
I've read that the drugs can take a while to get out of your system. It takes a while to regenerate healthy skin cells. After the hair starts growing normally, it can take up to a year to grow five inches. Hair doesn't grow as fast as some think. The average person grows just under 1/2" a month. Wish I had better news for Amanda. I know how hair loss can affect us.
My hair kept thinning for a while post-tx, also. I think those dudes are doomed, anyway. My nails were also incredible weak for 7-8mo post-tx. Now, 14mo post-tx, my nails are so strong they are hard to cut and my hair grew in thick, curly, silky and very, very dark. I'm 56 and also lost almost all the grey. The few strands are just lost in the shinny, dark curls. Even my mother, 80's, asked me if I dye my hair.
It's snowing right now. This is another winter I was not supposed to live to see. Instead, I'm SVR and not so ESLD anymore.
I lost a lot of hair during treatment (I am finishing up treatment this week). My doctor told me that it may take 2 months until I stop loosing hair post treatment. Hopefully Amanda will get her pre-treatment hair back soon!
Hate to hear that about Amanda. She is one tough kid. The hair will come back. Mine fell out in the first round of tx and in between, it started to grow back after about 3 months.
Sugie- I had a car wreck in '95 and if I had known that I had HCV, I would not have had so many sugeries to try to fix my neck. I have had tens, stimulators and all kinds of stuff and didn't start to feel any better till I started tx. I have had about 20 surgeries and "procedures" done to me in the last 8 years and believe me, if I knew then what I know now, no way! But each person is different. If there is a physical explanation (and they said there was for me), for the pain then take care of it. If they say this nerve is impinged here and that is what causes the pain, then do it before it causes permanent damage. Necks are a weird thing. We don't really notice them till they mess up, then you can't get out of bed because of them.
Travelmom - I don't write often but I've been following your plight Amanda's plight with the hep. I'm sorry to hear about this new problem. Hair loss at any age isn't easy to deal with but as a teenager, wow, it would have been really hard for me to deal with when I was a teen. Be sure to have Amanda's doctors rule out a thyroid problem, if they haven't already. The sooner you get a handle on this, the better. If it's not thyroid related, it appears it will stop when you stop the interferon or soon after. I delayed taking meds for about six weeks after I found out my TSH levels were high to see if they would go down but they didn't and I lost time and hair in that month or so. I wish you and Amanda the best. You're an inspiration to us all.
Britgirl - You say your hair has not grown back. Has your doctor told you it would grow back? Most of what I read says it will grow back eventually. Has it at least stopped falling out? When did it stop falling out for you? I've only been on meds for about a month now and I know it takes time to get normal again, but I'm getting impatient and anxious. Thanks pj
yes it took me about 6-8 wks for hair to stop falling out after tx. it does grow back for most of us. mine is now.
funny you said that new sojorn about your gray hair falling out during tx. im noticing that lots of mine did too. hey thats not so bad!!!
Mine took about 3 weeks, but if Amanda was doing more then one shot per week it may take a little longer. I would think everyone is different, just like sides. Got my hair cut about, short, about 3 weeks after tx. Then again in two months to try to keep it even with all the hair growing back. My hair first came in very curly but now, 1 yr and 3 months it is back to normal. I would have her tyroid check as Britgirl mentioned.
Give my best to Amanda....
could'nt liver damage in and of itself cause hairloss? i think i read that or heard it somewhere.it could be a thiroid problem. have you had that checked? i pray you're drs. will figure it out soon. Amanda sure does'nt need that problem as well. my thoughts and prayers are with you guys...sandi
Travelmom, I am sorry to hear about how this is all affecting Ammanda. I have 2 daughters, 20 and 23, and I know that appearances are very important.( I'm 46 and how I look means alot to me as well) If you haven't tried Nioxin yet, I would definately try it. It is a little expensive but it lasts well and you can get it at Ulta stores a little cheaper and usually on sale. It is a whole line of products from shampoo and conditioner to gel, hairspray and a revitalizing lift. There are many cute and sassy short hair cuts (most salons have books that could give you ideas) that can make hair loss less noticeable. My prayers are with both you and Ammanda. Take Care, berlynn
Sugie, I go to the chiropractor once a week. It definately helps with my head-aches and all the muscle and joint pain that I have as well as breaking up the toxins in my body from tx. I also belive that chiropractics can be a preventitive medicine, since alleviating any sublexation of the spine allows the neuorons to send out signals unimpeded. This allows your body's immune system to heal the way it is made to heal, naturally. The problem is that most people only go to a chiro when they hurt themselves. Sublexation is caused by more than physical trauma, it can also be caused by mental trauma such as stress and and anger as well as chemically (chemical imbalances and chemicals and toxins we put in our bodies such as tx). Going to a chiro on a regular basis, such as once a month can be a way to help your body's immune system work the way it was intended too as well as relieve aches and pains from physical trauma. If I sound, like a salesman, I'm sorry. My daughter is going to school to be a chiropractor and what she has witnessed and learned has made a believer out of me..I hope this helps......good luck, berlynn
I have tried most of the medications for my hair loss problem. But it was of no use. I think I have wasted lot of money spending on various hair loss products. Recently I have tried with Ayurvedic treatment. This gave a complete satisfaction for me. There are no side effects and no scalp itching. I got complete information on various hair loss treatment centers and specialists listing from hair loss treatment.
just logged on for hair loss, completed treatment the start of september. hair loss was devastating to me as it was by best feature..thought my hair would come back, it drastically thinned, especially on top- I use to complain about cowlicks, now my hair lays as flat as a cow pattie but I see from the comments it is a much slower process. hang in sweetie and do not overlook modern hair enhancements.. spend the money and go to a salon that is hip and stylists do extensions ect ..they can also recommend temporary and less expensive solutions and try Alterna hair care products, seems pricey but you only need a little..
I was so glad to read this forum, I have been on the treatment for 4-5 months, I had geno type 1 and I had to wait 2 years to wait on the new treatment. I can sqy I have been very blessed, I have not had ANY side efvfect except for a couple head achs and 2x I had severe body achs, but that is all. 2 months into my treatment my blood work came bad negitive in my blood and so did the next test, so I do feel very blessed because of that my doctor said I do not have to go full 9 months. The only side effect I am seeing that has been getting worse is I am losing my hair it huge globs, it has me too very freaked out, I cried the first time I seen it in the shower, the more I pushed condioner throufgh my hair it just kept comming out. I am so afraid to comb my hair. This is very scary, I thank God I do have very thick hair, but not so thick now. Every day my bathroom floor and carpets are full of hair, it looks so crazy. I was thinking as scary as it is, I cannot be a big baby because it is all worth it, I have a second chance at life and it could be worse if I was on Chemo. I just want to say to everyone who is going through this, as hard as it seems jusxt try and stay positive because this is our chance to live again! I pray everyone has great results and God bless you ALL!
You have responded to a very old post. You might want to create a new post of your own so people will see it. There are some more currents posts about hair loss. Several members of the forum have had success with Nioxin shampoo/conditioner. Hoping the rest of your treatment goes well, and congratulations on being UND
I am also three weeks off pegtrun and my hair is falling out in the shower on my brush its very bad. So I went to the doctor and they checked my iron and thyroid and my thyroid is slightly off but she says is not the issue , so I really have the same question when will my hair stop falling out?
Hey I can totally relate to you because im three months done with treatment and my hair is falling out very bad I pray everyday that it will be the day that I brush and noyhing comes out. So i went to the docter and she said that my throid is off alittle but thats not the cause I really think it is. What should I do ?The doctor says its due to the treatment but wouldnt it of stopped when the treatment ended?
Hopefully others will chime in and give you more information, but from what I have read on the forum it is not unusual for hair loss to take place after treatment.
Take comfort though, as it does grow back.
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