Hepatitis C Treatment Hair Loss
As if being diagnosed with Hepatitis C is not enough, the protease treatment currently offered has many potential side effects. Your doctor, and your will power, can help you to overcome them. With Hepatitis C Treatment Hair loss is one thing that you cannot hide. No one really knows how we feel with flu like symptoms, aches, pains, and fever. Until a person has experienced a platelet or hemoglobin drop, there is no way they will understand the dizziness and lethargy. We can tell others what our lab values are or go lay on the couch like a beached whale and they will surely have sympathy. Maybe they will think we are just being a slug. But when the hair falls out, we can really look as pitiful as we feel.
For me, the hair loss started years before the diagnosis. Perhaps you too had symptoms of cirrhosis. Liver disease can cause hair loss. You notice that the shower or tub drain is full of your hair and you attribute it to age, thyroid, or maybe menopause. (Yes. Men can have hormonal changes that cause hair loss.)
Not everyone will experience Hepatitis C Treatment hair loss the same way. Some will have very little while others may go practically bald. I lost about 70% of my baby fine hair. There are a few ways to cope with your hair falling out, but there is no magic cure here. I am your best friend, and am going to tell you what I discovered. You know me, I will tell it like it is. This blog is for the practical how-to’s. Another post dealing with the emotional aspects is coming soon. As a working girl who needed to keep up appearances, here is what I learned:
1. Hair products – Hair loss is not caused by shampoo or other products, nor will those products help to reduce hair loss. You are on a powerful drug that is in your blood system. Itching rash and peeling skin can cause you to scratch or rub your scalp more often. Try to treat your scalp gently. Use a mild shampoo and conditioner that is as chemical free as possible. I washed mine only 2 times a week to help my scalp calm down a little. Do your best to avoid excessive rubbing or scratching. I had scabs that were impossible to ignore. I scratched. I gave up gel and mousse during most of the treatment with protease inhibitors and Interferon, Ribavirin. I used very little hairspray, mostly to reduce frizzies and smooth the cuticle of my hair shaft. It looked kinda sorta smooth. Nah. It looked fuzzy. Haha! For advice on coloring hair during Hepatitis C treatment, see my blog post on hair and liver cirrhosis.
2. Satin pillowcase – I have always used a satin pillowcase because I like the way they feel. An added bonus during treatment is that the soft fabric reduces the friction on your hair and will not pull it out as easily as a cotton pillow cover. It is also easier on facial skin and you do not wake up with the sheet print on your face. This is important for those of us who experience water retention or ascites.
3. Hair cut – Some may go with a short cut before treatment to minimize the work of styling while dealing with all the other side effects. I have seen some of my facebook sisters shave it off and go with the bold bald look. I could not have pulled it off emotionally. Kudos to those who can! I stayed with a chin length bob and did not see a hairdresser for 2 years. I trimmed the ends as they got crispy and thin.
4. Wigs – By the 5th month of triple therapy with Telaprevir, Interferon, and Ribavirin, the drugs had done their work. My viral load was undetected! It showed. My daughter took me wig shopping. I put on make-up to disguise the anemia and off we went. I chose to go to a wig shop that was in the medium price range. My research had taught me that you get what you pay for. I tried on several. We played with different colors and lengths just for fun. But since my hair was chin length, I went with a wig that was similar to my pre-triple therapy look. I put my hair in a net every morning before I left for work. Then just as I arrived in the school parking lot, I plopped on my wig. With the annoying scalp problems, I could barely stand to have it on. I will get honest here: the scabs itched like stinging needles. The wig held in heat and made it worse. I pulled it off the minute I left work.
This got me through until spring, but by then, I had lost such huge clumps and was so scaly that I just did not care anymore. I went wigless on the days I washed my hair just to let my scalp breath. My once silky, fine hair was now the same consistency of a rat terrier’s coat. New growth had started giving me a surprised look on most days. Within weeks of the end of treatment my new growth was blooming and growing. It was funny to see a ½ inch of thick hair at the scalp and strands hanging below them. I used hairspray or gel to try and keep them down.
My family teased that I looked like Thing 1 or Thing 2 from The Cat in the Hat Disney Movie with Hepatitis C Treatment Hair Loss !
The emotional aspect was the worst. This post was easy to write. Losing hair can affect your mental game and there is another post coming up. I learned a lot through the experience. As always, if you have questions, let me know. ihelpc.com@gmail.com
I hope this practical advice helps all my Hairless Best Friends in the battle. Xoxo Karen:)
via mobilepetgroomers.com and wikipedia
53 thoughts on “Hepatitis C Treatment Hair Loss”
What I wanted to know is how much of the hair loss was permanent? Did all of your hair grow back and was this temporary during treatment? Thanks.
Hi Jon!
Thanks for stopping by! My hair loss started before treatment due to Hepatitis C and cirrhosis. It got worse during treatment and was really scraggly. My new growth was continual (but slow) during treatment, hence the surprised look. It all stood straight up while growing in! But within a few months, new hair tripled my thickness.
By the 6th month after treatment, I cut off all the old hair. The new growth was thick and shiny and at about chin length! I have to get it trimmed every few weeks now. My hair has always been thin and fine, so maybe the loss was more noticable. You would never know I’d had any treatment by looking at my hair!
Best of luck to you. It is one of the more discouraging side effects, but hair loss DOES stop after treatment ends.
xo Karen:)
Hi there, it is so good to share, I lost about 80% of my hair. It was awful. I lost much more with the Incivek, Peg and Riba then I did with just the Peg and Riba.
It coninued to fall out for several months after finishing tx. As it grew back in it looked like dandelion fluff but I like your comparison to Thing 1 Thing 2 🙂
Most of my hair is back 2 years after treating. I have every length of hair you can imagine. all of your advice is very good. Thank you so much 🙂
D
I’m always happy to hear the good news that the hair is growing back! It is one of the more personal things we deal with on treatment. No one can see our liver and we can hide the dark circles under our eyes.
But the hair – Ah that is the tough one. I think those who have long hair have the worst time because the ends get so scraggly from all the medicine. Cutting it short can be a real drag when you are used to long locks!
You’re so sweet to give kind comments. I really appreciate your feedback and LOVE it that your hair is back! It makes me wonder if you are coloring… That is another problem that comes up for some of us who have gray hair. I have found that my hair is dry since treatment. It may be my current meds I am on. But I’m still coloring, just less frequently.
My best love to you!
xo Karen:)
Hi there, yes I am still coloring but like you I try to make it less often than I used to. My hair texture changed after tx, it became curly now it is very fly away.
I am just grateful to have hair, thanks again for all of your information. It is really good.
Dorene
Dorene,
After reading your post, I decided it was time to go back to a better shampoo. I bought one with keratine and have seen a difference already. I think that diet plays a big part in how our hair grows. My texture has changed some. How FUN for you to have some curly hair! My first new hair came in wavy, but it’s flat and straight again!
Thank you for the comments. I love seeing tips and questions. I love you!
xo Karen:)
Hi I am so glad I found this site- I dont care for the fb group much anymore.
I did Sovaldi/.riba/pegasys from end of Feb to end of May 2015 at about five weeks after treatment my hair started coming out in handfuls – that was real hard on me as my hair was to the middle of my back and looked like a lions mane. I have probably lost about 80% of it – it has stopped thank god but im gonna have to get whats left cut probably to my shoulders as I wait for it to grow back – ugh – I am using Nioxin ive only been using it for two weeks but I feel and see a little difference – I also take Hairfinity biotin and hair vitamin capsules and I’ve taken those for at least seven years.
I take 1000 mg a day of that.my hair grows very fast and I am going to be realistic and give myself at least a year for it to get back to how it was. I am genotype 1a and I cleared the virus so it was worth it
ALSO during the horrid month of june at EXACTLY the time that my hair was leaving my head I got purple rashes on my legs and ankles below the knee ONLY and my feet swelled up so bad I had to buy a size larger flexable sneaker not a single other shoe I had would fit – I like a lot of lace up goth boots and sandals and such. Now that has STOPPED totally as well – i put gold bond on it and wore medical socks. Any shoe I had fits again – although I wear the Danskin sneaker a lot because I am being wary.
ALSO my abdomen hurt badly and swoll up I looked as if I were pregnant. That has also stopped. I thought I had the disease Cryoglobulinmeia but I do NOT I have been tested. well I see a rhumy next week and we will see what he says – but this medicine SUCKS but it did do the job so I go hopefully into the future!!!! I know my hair will grow back and my muscle tone will improve.
Hey there! Congratulations for getting through the treatment, that is a hard thing to do. Especially with the interferon. I am sorry to hear that you lost most of your hair. I had the same thing happen when I treated with Incivek, Inf, Riba. It was awful, I can sympathize. I was so upset as I had long hair as well. I know people have told you it will grow back, it will. I slowly trimmed it as the ends would look bad/straggly 🙂 I was obsessed about my hair. It does get better. Nioxin is a good product, I used that. I was really upset about the hair loss and ended up holding on to what was left for a long time. I also used hair vitamins, extra biotin and another topical product that is expensive but worked well for me. I am sorry to hear about the rash and swelling. I had cyroglobulin problem but I have not seen it since I got to SVR. I am glad you tested negative, I had to be tested several times because the lab did not handle the blood correctly. Your rash and swelling could just be residuals from the tx. It can take up to 6 months for the ribavirin to leave your body. I hope that every day you will feel better and better. Try to drink water to flush your system, if you can, take short walks. I got to where I was just walking up and down my hallway through the living room to try to keep everything moving.
Yes your muscle tone will improve, you will look and feel better and better as time goes by. Right now you are early in your recovery from the treatment. Again, congratulations for getting through a really rough time. Soon this will be a blip in your rear view mirror
Take care, please keep in touch, we are all in this together 🙂
I was thinking about you. Did you tell your treatment doctor about the purple rash, swollen legs and abdomen? If not I think you should see him. My thoughts and prayers are with you.
This is a registered nurse with years of experience, she is very kind
http://blogs.hepmag.com/lucindakporter/2013/05/when_hepatitis_c_tre.html
I just finished the Sovaldi, interferon, riba treatment April 18th, it was a 3 month treatment and my hair did not fall out until right after I got off the treatment. I have done the treatment before, the last one before this was Dec 2011- Feb 2012 and my hair fell out but nothing like this. I am so scared as it is still falling out 2 months after, I cut all of my hair off almost and I am literally almost bald. Do you have any suggestions as to why it is still falling out and what I can do to help it stop? I am on like 90 mg of Armour, taking iodine, am bombarding myself with B12 and doing a chelation treatment to clean my blood – just was hoping to get some ideas. Thank you.
Aline,
Congratulations on being free of the Hep C virus! It seems that maybe the hair loss might me related to the thyroid? If I remember right, Armour can have that side effect. Have you discussed this with your doctor? It sounds like you are doing everything right!
I still get some hair loss, but the major portion of it stopped for me when treatment ended. I have only had one other reader ever have continued hair loss after 6 months. Maybe she will post again and give us some tips and an update. I hope that by now you have found out for certain what the cause is, or that you have less loss than before.
One important question: What does the new growth look like? Do you have a lot of find little strands sticking up? What you want is for the new growth to outnumber the loss. Does that make sense? Sry so late to answer..
Thanks so much for stopping by,
xo Karen:)
Hi,
I finished Sovaldi, interferon & riba early May 2014. After 3 months I’m undetected, but my hair continues to fall out. It didn’t start falling out until at least a month or more after I finished treatment. I had quite thick hair to begin with, but it is very thin now and still falling out. Does not appear to be growing back yet after almost four months.
Cheryl
I had hair continue to fall out off and on for months, but it should be slowing down. Again, girl – these are powerful drugs and there are no long chains of years to prove what happens to our bodies. YOU and All of us are the ones who are making history on this.
Questions: Are you on any other types of medications? Are your liver enzymes good as far as labs go? I’m curious about the length of your hair. Is it growing out? I just finished chemo for that darn liver tumor and am noticing some fall out. It reminds me of treatment. I keep remembering: It DOES grow back!
Keep in tough and thanks for dropping by,
xo Karen:)
Hi Karen,
The only other medication that I’m on is Atenolol for high blood pressure. Have been taking it for a few years, so that has nothing to do with the hair loss. Had all blood work done on August 6 — everything was fine. My hair is relatively short — had it cut a little shorter last time. I think I started to notice a little hair loss about a month after I finished the last pill (probably early to mid-June). It’s very noticeable to me — seems as though I’ve lost well over half my hair — no new growth yet. Lucky for me I had thick hair, so it’s not very noticeable to everyone else. Starting to think I’ll go bald which is freaking me out.
I remember feelin the same way. Your mind can play tricks on you after hair loss and any stray hair in the tub is threatening. YET, some hair loss is normal. So I tried looking for ways to measure the loss. For me, it was by checking my part. It definitely got wider and wider. Waay too much scalp showing.
I knew that Nadolol can cause hair loss, and any beta blocker can. Your chemistry can change after treatment and I wonder if that triggered hair loss from beta blocker? You know, the doctors can’t really say exactly how the treatment effects our body for sure. A large component of it is brand new drugs. I searched Atenolol vs Nadolol and hair loss and some said that switching helped. It would be worth it to ask your doctor.
Be sure you’re getting a well balanced diet, or at least taking a multi vitamin. I also use a protein shake with greens and amino acid stuff. Thanks for connecting. I’m cheering you on in this hair loss thing! Don’t give up and let us know what works!
xo Karen
I’m wondering
Hi! I was recently diagnosed. I just started a new job too so my insurance wont kick in for 7 weeks. My hair falling out like crazy.. csn i ask what u were diagnosed with? And what treatments u went through?
I had Hepatitis C and was genotype 1a. I started on the 1st round of protease inhibitors called Telaprevir by Incivik. The side effects were all rougher than the current treatments. Hopefully you won’t have a lot! I remember searching hair loss for months before the FDA even approved. Idk why we worry about that so much. I know that it was important for me to look good not just for my family, but for my job.
The hair loss is not as severe with new ones, so I wish you the best of luck as you go through the treatment! Gentle, infrequent washing and a satin pillow case really do help!
Take care sweetie,
xo Karen:)
Hi Karen,
I have been reading all the previous posts and wanted to comment. My experience after completing 12 weeks of interferon, ribavirin and sovaldi seems to mirror some others. I too started losing hair about a month after end of treatment which was July 31. Every day since I have lost a lot of hair. Since I had really thick hair no one has really noticed but it sure bothers me. I try to not over wash, not over brush etc. but all you have to do is practically blow on it and it comes out and or breaks off. I can be standing still and feel it dropping on to my arms. Hoping it stops soon!! This is a great website, wish I would have found it during treatment instead of after.
Peggy
Peggy,
I’m glad you found the Best Friend’s guide! It’s always a charge to hear sweet words. Thank you.
Now, about the hair. The big time hair loss stopped and I actually had to have my hair thinned earlier this year. I remember getting a little panicky when seeing some in the sink, but it was nothing compared to loss on treatment. One thing to watch for is NEW growth. If you have a lot of strays standing up on your part, it is a good sign. The new growth will actually cause your hair to thicken up as it gets longer.
As for feeling them on your arms, I have been going through that since my TACE procedure. (chemo) It totally reminds me of what it was like during treatment. I always thought a mosquito or spider was on me when I felt the hair on my neck or arms. Since you are about 2 months out, I would be patient with it and hope to see less and less “fall out” as the weeks go by.
Eat a good diet and lots of fresh water and juices to help your body restore itself. Hair and nails both are indications of what is happening inside us. We’ve had some strong drugs in our body and it takes a while to detox.
Congratulations on killing the virus! Here’s to hair that grows faster than it falls out – for all of us!
xoxo Karen:)
Hi all,
Hep C free!! I finished my last dose of Sovaldi & Ribavirin on May 6th and last shot of Interferon on April 29. Did not start losing my hair until 4-6 weeks after that. Just wanted to let you all know that the hair loss will eventually stop. I’m a little over 5 months post treatment, and have very little hair loss now. Don’t see any new growth yet, but I’m sure it will come. Stopped Atenolol shortly before the hair loss slowed. Changed blood pressure meds. It was worth it now that it’s over!!!!! Keep the faith.
Congratulations! Once you hear that you are free of the virus, it just doesn’t matter what it took to get there! Hair loss and all! I’m wondering if other meds can keep hair loss going after treatment is over. Thank you for pointing that out.
I know for sure that it eventually grows back. Some of the meds make it a little dry. But just keep cutting it off as it grows and soon it will be all new hair!
So happy that you are Hep C free! Thank you for being an encouragment to others!
xo Karen:)
Hi, Karen, I am so happy to find your blog. I was diagnosed with Hep C last week and am still processing. I had Hep B as a teenager and probably have had Hep C ever since then, but didn’t know until a routine blood test for a physical. Now I see that I have had symptoms for quite some time. My hair kept getting thinner and now I am noticing I am losing it more noticeably and I have not begun treatment. No one has commented on Rogain or other hair loss remedies. I am wondering about those, any thoughts? Thanks so much!
Hi! I tried Rogain several years ago before the diagnosis and didn’t notice a big difference. It just doesn’t give the bang for the buck where liver disease is concerned. You’re right, there is not a lot of feedback on that subject. Since I finished treatment and am HCV free, I’ve actually had to thin my hair because it grows in fast and thick! I’ve lost some since the TACE procedure, but new growth is coming fast. I hope you have the same experience!
Getting rid of the virus will be so much easier with the new drugs, and many do not have the extreme hair loss of the earlier Protease Inhibitors. I hope you find everything you need to know and breeze right through this! Thanks so much for stopping by. I appreciate the feedback.
All my best to you. xo Karen:)
P.S. I’m happy you found the bff guide too. 😉
Hey there! I have been thinking of you, love your blog, miss you on MH but I understand you only have so many hours in the day and this is a wonderful blog.
I have been writing to you off and on about my hair. I lost it for about 3 months post tx. Then I had my thyroid checked and my TSH was very high. I later learned that the treatment was a shock, that can cause hair loss, then the treatment itself, then the low thyroid. So I guess I had a triple threat for my hair. My hair did come back in curly and I liked it but now it is getting straight again. It is so fly away now, I am not sure what to do with it. What kind of shampoo and conditioner do you use?
I do still color my hair but I try to go 3 months in between. I don’t know if everyone can do that. I don’t have a line so it is easier for me but that hair is pretty droopy. Lately I have started to used a root dye to just do that hair to try to make the color last longer.
Now i just need something to help make my hair last longer. I had back surgery last December and started losing hair again, grrrr
I guess what has changed the most is the texture which I guess is a result of the hair being gray 🙂
I hope you are doing well.
Take care,
Dee
Hello Dee~
I’m glad you have got all your hair back. I had some curly places for a while, but it’s all straight again, like yours. And yes, mine came back in pretty gray. It grows so fast though! Like 1/2 inch a month! I try to use salon products because they make it softer and shinier. I buy them on sale or get at a discount store like Walmart. Right now I am fighting static electricity! I have to use conditioner just to get it to calm down. The other day I used a dryer sheet on my hair. lol!
Are they treating your TSH levels? I know your holiday will be great this year without having the surgery to worry about!!! All my love sister and take care of YOU!!!!! xo K
I lost a lot of hair after I finished blood thinning med. at the end of May 2014. I take a daily vitamin and my hair loss had stopped. It is sort of wavy now where I did have baby fine hair. The last few months it looks like I have all of these short hairs sticking up. What is that? I can’t get out much so it is not that bad. I was wondering if any of your readers had this? By the way, I was on thinners because I had cancer which was successfully removed with hysterectomy.
Girlfriend – that is NEW HAIR growing back in! They wave in the breeze and refuse to lay down. Haha! That is what I call the “Thing 1 and Thing 2” hair. I’ve got it again now since the chemo.
Congratulations of beating the cancer! I am certain that your new hair will grow back thick and strong. I’m losing some of the wave that came with new growth. It’s almost like my old hair again. I’m so happy for you and wish you the best this holiday season! xoxox Karen:)
Karen,
Thanks for doing what you are doing here, with sharing your experience and allowing others to do the same. I also had genotype 1a. I successfully completed treatment with teleprivir, incivik, and peg-interfuron, as I recall, one and a half years ago. I was 25 when I began the six month treatment plan. The potency of the treatments is incredible, and the side effects are unfortunate. However, knowing that I am well makes it all worth it. I said during treatment, “If it’s making me sick, then it’s working.” That was good news. My hair never fully rebounded texture-wise, but it is healthy again. I’m grateful for that. I learned the value of a good diet and hydration through the experience, along with some other important lessons. To ALL who battle, you are not alone, and it is worth the fight. Take it a day at a time and know that you’re cause is a noble one.
With love, Jake.
Hay Jake!
There are quite a lot of us who survived the old triple therapy. It seems funny now because it was SO new back in 2011 and the protease inhibitors were only the beginning. It was hell actually! haha. But we survived.
My hair texture is almost the same. It had a few waves in the beginning, but it’s just about all stick straight again. I’m with you on the nutritional lessons learned. That experience was life changing in so many ways. We have a lot to be grateful for. I know that some people take life for granted. We never will, right? Thanks for dropping by and adding encouragement to those who are battling the virus and new treatment now.
Much love, Karen:)
Hello my name is Heather, I found out in April 2013 that I had Hep C. I am 26 years old And had been tested several times prior to then. After a biopsy (ouch) I found out I was born with it. I started treatment in August and had clean results since October but finished my treatment the first week of December! The past month and a half big huge wads of my thick long beautiful hair is falling out 🙁 I recently had to have several inches 5 to be exact cut off, thinking it would help. It seems to only be getting worse, I am getting to the point where I’m getting so depressed I hardly get out of bed, I know this makes me sound awful but I don’t even want to shower because I can’t stand to see anymore hair in the drain. If I even try to put it in a pony tail huge amounts fall out. I have a wonderful support system at home with my wonderful fioncee always telling me I’m beautiful. It’s been a hard journey because a not so great person got ahold of my positive result and shared them with Facebook. As if dealing wasn’t hard enough. To some I did deny it to but to some I was honest with, and it doesn’t help that I live in a really small town. I don’t think the illness is something to be ashamed off and in many cases can’t be helped. I’ve been dealing with so much, I even lost my job 2 weeks before Christmas because the same person told my boss about my situation. I feel like I’ve lost all dignity and all I have left is my fiancé and my pretty hair. Even though she constantly tells me I am so beautiful I just am having a hard time feeling beautiful. I hope someone can relate or understand. In another way I feel blessed to have had this because I feel like I took my life for granted before this, and even some loved ones. This illness has been physically and mentally stressful. But I do feel like I am living for the first time, if I could just get past this hair falling out and maybe move to a new community my life would be perfect. How long does this hair loss go on for ? Will I lose all of my hair? Is anyone else having issues with severe night sweats and cold sweats during the night and day? Thank you all so very much! I enjoyed reading all of your stories, they gave me hope.
Hi Heather,
First off, congratulations on clearing the virus! Woohoo! That’s the first step and a HUGE one. I still have some hair loss, but attribute it to age and liver failure – you have neither of those… Makes me wonder if there is something else going on or if it’s the residual of treatment?
I wonder if you see what I see… there has been some loss and pain in your life – starting with the diagnosis, then betrayal and loss of your job. You’ve been through a lot in the last 2 years honey. You have your fiancé and also have learned some wonderful lessons that many people never learn. That is a gift and it’s awesome that you realize it.
Talk with your doctor about the hair loss and give it some time. But also consider looking for ways to deal with the aftermath of the health crisis you just finished and also the losses that you experienced. Countless readers have expressed having trauma as a result of HCV. Stress itself can cause your body to be imbalanced and lead to hair loss.
Just some things to consider. I’m really glad that you wrote and want to thank you for sharing your story. I am sending you love and light and that you can move toward a bright future. All my very best to you.
xo Karen:)
I ment to say I found out about my illness in April 2014, last year! And started treatment in August finished it in December yay!!
Hi,
I’m a 60 year old (this year) black female with hep c. Don’t know how or how long l’ve had the virus, but I do. I’m not on treatment yet, pending approval. My hair has been falling,and weak nails, out for three years now, and if I am approve, what help do you have for nappy hair?
Thanks in advance!
Bren
Hi Brenda,
I just logged on and glad to see your comment. Thanks for dropping by. I hope you get approved for treatment. With the new drugs, you have a great chance of getting rid of the virus. Other than what I know about hair in general, I’m sorry that I don’t know about any products that would specifically help your hair.
My friend Rosyln Daniels at Black Health Matters may have some ideas for you and I’m sending her this link. You can also find her on google+ and Facebook. If you go to ihelpckaren, she’s my friend!
As for nails, they do get better after treatment, but may be a sign of liver damage. Has your doctor checked for any stages of cirrhosis yet? Splitting, breaking, and ridges can be a sign that you are dealing with liver disease. Like I said, it can go away after treatment.
I’m so glad you stopped by sweet girl. Keep your chin up! Getting rid of the virus will give you a whole new chance at life!!!
Keep in touch, kk?
oxoxoxo Karen:)
All I can say is this has been the most encouraging words I have heard since my diagnosis. Thanks for your realness! !!!!
Hello there! How are you doing? I agree with you. Reading Karen’s articles is much like talking to your best friend across the kitchen or dining room table. She is so real and the eternal optimist. She gives me hope that I can be like her one day.
I am Dee, I have been helping her with this blog since she had her liver transplant in April. If you have any questions, please don’t hesitate to ask. We might not know but we will try to find an answer for you or tell you where you can find the best information. Do you know your geno type? That would determine which treatment you would do. I hope that you have a good liver doctor that you can trust. I was lucky, my doctor hired one person to help all of us who were treating. We could call on her for assistance. Back then it was Incivek, Interferon and Ribavirin which was tough. That is what Karen took too.
Hang in there. It can be a real shock when you are first diagnosed. It took me 3 months to be able to discuss it without crying or tearing up. Keep in touch, Dee
Hello Dee😊
Well my next appointment will be next month 2/4/2016. That’s when I find out my genotype .so please keep me in your thoughts cause you’re right it is shocking. I still cry almost every day cause I can’t get a grip of the whole thing. My fatigue and pain is unreal! Some people just don’t understand and think I’m just being a big baby. The hair loss itself just took me for a loop but I’m trying to keep myself above water. I just want truth and realness in what I am about to face and room to cry but enough encouragement to be able to pick myself up. I’m i being selfish?
Just venting,
Debra 😣
Dear Debra, please vent away. No you are not being selfish. I remember feeling the same exact way. I thought it was a death sentence back in 2007. It wasn’t. Please try to take comfort in that. Did you get your viral load, sorry I can’t remember if you mentioned or not.
I felt no one understood what I was experiencing. This will sound silly but my hair loss became my obsession. I could not believe how much I lost and how fast. You are right about others not understanding but that is because they have not walked in your shoes. You will find, eventually, that you are stronger than you even thought possible. I have now been cured for 4 years. My hair did grow back. You will begin to see baby hairs everywhere. Look at your hairline, you may see them even now. Please hang in there. My doctor told me to do what ever I had to do to get through the treatment and I did. If I had not gotten cured 4 years ago I would be close to liver failure now instead of improving every day. Becoming a more compassionate person is a long term side effect of the treatment. I now understand others who are too sick to get off the couch. I used to think I could force myself to do anything. That was before the treatment. Please keep in touch. When you go to the doctor please write down any questions you may have. It is easy to forget what you want to ask. I would think I would remember but I didn’t. Even better is to take someone with you. I am praying for you Debra. My best to you, Dee
Debra, I forgot to mention that the newer drugs for HCV are supposed to be much easier. than when I treated 4 years ago. There are several and are of a much shorter duration. If you have a low viral load it could be as little as 8 weeks. Then there is the treatment that is 12 weeks. It all depends on your geno type. I hope you will keep in touch. Dee
Dee Ernst recently posted…Depression during Christmas with Hepatitis C or Liver Disease
Hi,Im on a cell phone n not good with email n kind of private right now with this. I’m pretty upset n haven’t even gone 4 any type of treatment or anything. If u have any extra time during ur day,would u please text me?
Hi I am very sorry that you have not gotten an answer, I have left this on here since 1/6 in the hope Karen would see you.
Email is not much different than texting. Please email her. She wants to help everyone it is difficult as she is still recovering from her transplant. Take Care, Dee
Hi,this is megan,I cant do email n afraid 2 do treatment,cant u text me sometime when ur not busy? U seem 2 b very easy 2 talk 2.
Hi there! I am hoping that Karen will see your other message asking her to call you. She is still in recovery from her transplant. Email is a lot like texting. AOL gives a free account. Take Care, Dee
Hi there, I was thinking of you. Karen has an email you can write to. Ihelpc@gmail.com. I hope she sees your message about calling. I have left it as a new message so she may notice it and for privacy reasons for you.
Dee Ernst recently posted…A Spin Around the Sun
Hi… I finished my last dose of pegintron clearclick with ribavarin on March 25th, 2016. Worst 6 months I have had to go through…. EVER. I couldn’the walk more than 10 minutes without needing to catch my breath…. I also have 1 very itchy, purple calf muscle. I can’t remember if the person that mentioned it before said THAT will go away…. but I hope 😊. My first two viral load test have come back as “target undetectable”. Two more test like that and I am told I can consider myself cured…. thank god…
The hair loss is the worst part. I had hair so long and thick, it was like having a sweater on all year long. It was so long, that I used to have to wrap it around my neck when I used the bathroom or got dressed, or I would find it in places I didn’t want to find it…lol. Then I started this treatment, and the amount of hair loss was and still is staggering. I do have some fine, wispy, feels-like-bugs-crawling- over-me, very curly, very fine hair coming back, but the loss of my hair I had pre-treatment, is really quite disturbing. Having read the previous comments, I am encouraged and hopeful.
I wanted to let Karen know, that I appreciate all the’s encouraging post from her and hope that here latest tribulations have the hoped-for results.
All the best to all who have, or are still going through treatments. I am told, it does get better. Just give yourself a break…. Rome was not built in a day…. ☺
Oh sweetie! Where do you live? I am surprised to hear from someone who has done the Pegintron and Ribavarin. I know that some Genotypes still have to use it. I did it twice. The first time I relapsed within 4 weeks. The second time I did it, Incivek was added. I got to UND 4 and a half years ago. I was diagnosed as cured 4 years ago. Because I had cirrhosis, it was very difficult. You may know this however it takes up to 6 months for the ribavirin to leave your body. That is why they recommend not getting pregnant until at least 6 months after finishing treatment. I have to commend you for makin it through the tx. I have a friend, Geno 3, treated with same as you. She has been cured ever since. One thing I want to say is that everyone is different, everyone takes different times to recover. Try to drink a lot of water to help flush your system of toxins. Also, if you feel up to it, try to go for short walks. Someone told me that, I didn’t listen and suffered for longer than I needed to. I finally decided I feel bad when I sit, I feel bad when I walk, I’m walking 🙂
Oh the hair loss is the worst, I became obsessed, it was every where, my husband was wearing it to work. It was in my food. I felt like a dandelion head 🙂 It will grow back. My hair, normally straight, grew back curly. It stayed that way for over 2 years. Now it is straight again. It does come back. You will start to feel better. I did not do this ha ha but others told me to get a hair cut. I had so many lengths of hair from 1/16th of and inch to several inches. I was afraid someone would cut it all the same length. Find someone you trust. Karen waited a long time for her hair cut. She only wanted an inch or so trimmed. They cut it all off, she was devastated. Can you tell how obsessed I was with hair loss 🙂
There are a couple of really great groups if you are interested. Lucinda Porter is a nurse who has a blog and she helps others. Of course you can always come here. I try to be here every day but sometimes my back wants to be in bed 🙂 You have a wonderful attitude and that will take you far in your recovery. I think that you have to give yourself at least 6 months before you consider you are recovering. I had a problem after two treatments. I did a lot of research for 3 years, trying to find an answer as to what happened to me. Where was my mind? Where was the me in me? Finally, finally I found an article that said Interferon depletes our dopamine levels, these are our feel good chemicals. I found that L’Tyrosine could help increase it. I am happy to say I think it is working. I started taking and noticed a difference pretty quickly. I hope this helps you, please keep in touch. We all try to stick together and pay it forward, HUGS, Dee
Hi Dee.
First, I am very curious how Linda is doing??? I hope she is doing better.
I live in Canada and my provincial government was willing to pay for 80% of the cost of the treatment and because I was in a bit of a time crunch (I was moving to another country), I needed treatment to start immediately and this was the only one our government was willing to pay for. As for my genotype, I know they told me what it was, but I can’t seem to remember what it is right now and I don’t really care to go looking for the info… LOL I do know that my viral count was very much on the low side, so the doctors were not really worried about what meds I would need to take. But when all was said and done, it was a pretty devastating treatment to say the least. Had NO energy, wanted NOTHING to do with sex, food???? No… didn’t want anything to do with it… though I knew I needed it for energy. Didn’t drink water before the treatment, but I have done nothing but drink it, with the occasional coffee and the odd bite to eat.
I started taking the combo in October 2015. I had my first viral load count in January 2016 and it came back “TARGET UNDETECTED”. The second one I had just before we left for said other country, came back again – “TARGET UNDETECTED”. I need two more of these to officially say I am cured, but fingers crossed, that is the way it will go.
The hair loss was so extra devastating because my hair was thick and long and luxurious and for it to come out by huge handfuls and there was NOTHING I could do about it…. made me so very depressed. One of the few things that made things just a little more palatable was the fact that when I was done the treatment was done, I would be on my way to sunny Nicaragua (my husband and I had decided a long time ago to retire here). It has made the whole difference in my attitude. My energy is already on the move up… I don’t walk away from being “romantic” with my husband… Things are certainly looking up for me and I have nothing much more to complain about…. well except for the continued hair loss… LOL But you all keep telling me it will get better, so I am keeping the faith… 😀
I thought about taking something else for all the stuff going on with my body, but have decided that I do not wish to take ANYTHING else. I don’t want to take more pills or some other drug to feel better. I am doing this with pure will power and for the moment it is working for me. I have a wonderful husband that supports most all my decisions ;), I have a beach for a back yard and sunshine every day… life is good right now.
My hope for everyone here is that they find what works for them, continue to be supportive (very necessary) and good luck with all your decisions to do with your health. I also hope that everyone gets the outcome they are looking for.
Be sure Dee, I will be back. I felt very much like I was hanging with my GF’s and that is something really unique, because I don’t really have many.
Hugs,
Lise
Hello Lise! I am very happy to hear how well you are doing. Nicarugua sounds like paradise. The hair loss was devastating. It was all over. Karen is a school teacher so she started to wear a wig. It was pretty miserable. I just stopped going any where unless I had to go. I just pulled it back as best I could to cover the bald places. It came back, I always had thin hair so it is thinner but at least I have it 🙂 Also may nails were in bad shape for quite a while. They say the interferon goes after fast growing cells so hair, skin and nails. Thank you for sharing your story. I know it will help others very much. I have a friend who was diagnosed before I was. Like me he had cirrhosis. Two years ago he was told he needed a liver transplant. He tried the interferon and riba but did not take it long enough. He thought since it was UND that he could stop. Plus it is so miserable especially with someone who has cirrhosis. Now he is in the hospital so full of fluids it is now in his lungs. I don’t know if he will survive. I like thinking of you with the water in your back yard. Many time after treatment we are deficient in Vitamin D, I am so happy you are in a sunny place, HUGS Dee
Ten years post treatment, my hair never grew back and there were no other underlying medical issues. I did not have cirrhosis, thyroid disease, or a family history of thinning hair or baldness.
I personally know others in my same situation. I never hear our stories represented.
I’m glad you posted, because you’re right. We never hear of this. 10 years? Honey I’m so sorry. Have you tried the usual things like Biotin supplements? There are shampoos like Nioxin and also Peter Lamas has a line. I’d really like to hear back from you. I’ve got some product that has helped and I know others who have tried some too.
xo Karen
My aunt is a beautician and suggested I try Nioxin prior to treatment in anticipation of hair loss as my mother went through treatment 5 years prior and had some thinning. During treatment my skin was so sensitive the amazing tingle actually burned. I resumed using it after treatment and still do to this day (it’s pricey but mom’s have to indulge somewhere 😉 ) I take several vitamin supplements and biotin, which has given me amazing nails, but no hair regrowth.
Ten years and still clear, my hair and the year was a small price to pay when we look at the big picture.
You’re right to keep it in perspective. In the big scheme of things, what matters is that we’re here. I’m still a little vain and want to look my best. What I know is that being surrounded by people who love me as I am is the best beauty secret in the world. Thick hair won’t help you if you don’t “feel” pretty and loved.
It sounds like you do and I’m so happy for you! Yes, and indulging on those products is a smart thing. You ARE your own greatest investment. Love you girl,
xo Karen
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