Author Topic: One Year Post Harvoni loosing hair (Read 16263 times)

hepcme · « **on:** January 15, 2016, 02:55:05 am »

It has been one year now and I look back at my old posts and say...ehhh I am getting better but still have issues...my eyes are still blurry and just not right..some days are worse than others but not good overall...
Dizziness, probably from ears ringing
Tinnitis...so bad and getting worse all the time
Thumb joints are enlarging
Memory is better ..so much better
Loosing my hair now..whats with that ??
Not craving all the food and eating for 4
No headaches
Have this pain in groin area of arteries

?
Lost 13 lb...
Have bags under my eyes and sleep good ??

lporterrn · « **Reply #1 on:** January 15, 2016, 11:28:15 am »

Sounds like you have a medical problem that is unrelated to treatment. Hope you are seeing a doctor.

Sue2oliveu · « **Reply #2 on:** January 17, 2016, 09:29:57 pm »

Hello,
I ended treatment at the end of October and I also have been having hair loss. I am not sure if it is related to have HCV? I am awaiting results from my 3 months post treatment. At the end of treatment I was UNDETECTED. So thankful for that and also thankful for this forum. Linda Porter is the best on this site. So helpful and informative she is. All the best to you!!!!

Sue2oliveu · « **Reply #3 on:** January 17, 2016, 09:31:26 pm »

I meant Lucinda....I do that every time. $:-\$

SIXFOOTFOUR · « **Reply #4 on:** January 18, 2016, 09:14:04 am »

Im about 8 months EOT, undetected at 6 months next check will be at 1 year. Im confident that the Harvoni did its job. But Im one of those that had more trouble post treatment then on treatment, headaches, nausea, gi problem on and off weakness. Everything related directly o my treatment is now gone or almost gone. But every other health problem that arises one of my first things I want to go back to is it a side effect of treatment...or of my body not used to not fighting the Hep C for 45 years.

I think if your EOT and new problems are occurring its best to get you medical team to check you out. its too easy to try to link everything to this last big battle that we fought and used a strong new generation of meds and think its another side effect.

And I also agree the Lucinda is a great resource here and in my experience really made me feel welcome to express my feelings and shared so much knowledge. Without This forum, her and so many of the other members here my journey would have been a lot harder and lonely

lporterrn · « **Reply #5 on:** January 18, 2016, 01:11:33 pm »

Sue2,
It's hard to know if it is related, but I am trying to pay attention to these sorts of reports. An important thing to know is that hair loss occurs because of what we did 8 to 12 weeks previously - for instance, someone gets a high fever from a flu, gets well, and then 2 or 3 months later, loses a lot of hair. By then, the tests are normal, and no one can figure it out. Another common reason for hair loss is thyroid problems. We go through treatment, then lose hair, the doc checks and finds we have a thyroid problem. Naturally, we connect it to treatment, but unless we are taking interferon, it is most likely a coincidence. As we age, we are at high risk for hypothyroid.

I had significant hair loss a few years ago, and there was no explanation. However, 3 months earlier I had taken Nexium for a month which blocks magnesium absorption. I looked up the symptoms for low (hypo) magnesium, and that was how I felt on Nexium - the hair loss followed.

It may be worth looking at one's symptoms to explores possible explanations. When doing this, start with the obvious explanations.

And thank you for the kind words. Between Lynn, and Gnatcatcher, and Philadelphia, (the list in endless!), I am on the Olympic team of hep C advocates.

dragonslayer · « **Reply #6 on:** January 19, 2016, 09:18:38 am »

Quote from: lporterrn on January 18, 2016, 01:11:33 pm

Sue2,
It's hard to know if it is related, but I am trying to pay attention to these sorts of reports. An important thing to know is that hair loss occurs because of what we did 8 to 12 weeks previously - for instance, someone gets a high fever from a flu, gets well, and then 2 or 3 months later, loses a lot of hair. By then, the tests are normal, and no one can figure it out. Another common reason for hair loss is thyroid problems. We go through treatment, then lose hair, the doc checks and finds we have a thyroid problem. Naturally, we connect it treatment, but unless we are taking interferon, it is most likely a coincidence. As we age, we are at high risk for hyperthyroid.

I had significant hair loss a few years ago, and there was no explanation. However, 3 months earlier I had taken Nexium for a month which blocks magnesium absorption. I looked up the symptoms for low (hypo) magnesium, and that was how I felt on Nexium - the hair loss followed.

It may be worth looking at one's symptoms to explores possible explanations. When doing this, start with the obvious explanations.

And thank you for the kind words. Between Lynn, and Gnatcatcher, and Philadelphia, (the list in endless!), I am on the Olympic team of hep C advocates.

Hi Lucinda,

Did you mean HYPOthyroid? I wasnt aware that as we age, we produce MORE thyroid hormone; I always thought it was less...

lporterrn · « **Reply #7 on:** January 19, 2016, 06:38:38 pm »

Thanks Paul - my brain thought hypo, but my fingers typed hyper - you are correct and I fixed the error.

Lynn K · « **Reply #8 on:** January 19, 2016, 11:23:17 pm »

I have had a loss of most of my body hair and some thinning of my hair on my head but that started a couple of years after I was diagnosed with cirrhosis and long before I started on Harvoni or sovaldi /Olysio. I have had my thyroid levels checked and they are fine not hypo or hyper.

I have read where cirrhosis messes with hormone levels causing things like gynecomastia or breast develop in men which can be from cirrhosis so that is what I am attributing my hair loss to. I have also found references specifically that body hair loss can be a symptom of cirrhosis.

But that is just my situation don't want you to think about cirrhosis as a cause if you haven't been diagnosed as a F4

perineuro · « **Reply #9 on:** January 20, 2016, 12:58:00 pm »

Prior to treatment, I was developing some strange health issues like peripheral neuropathy (horrible...) and I ended up in the hospital for trying to self medicate this pain I was having via alcohol. My hair just was starting to fall out... then I started treatment, hair issue was no longer...

But now that I have just finished 16 weeks of Sov/Rbvrn my hair is thinning, not falling out like before, but each strand seems to get thinner everyday. Not sure what's next? Partial baldness? kinda scary

Oh, I am going to check my lab tests for low magnesium as Lucinda mentioned in an earlier post.

lporterrn · « **Reply #10 on:** January 20, 2016, 02:05:01 pm »

Perineuro - Because you were on ribavirin, I wouldn't be surprised if your hair stops thinning in 1 to 2 months and in ~3 months you will see little wisps of new growth.

Flaco · « **Reply #11 on:** January 20, 2016, 09:19:30 pm »

I've lost most of the hair on my legs (a woman might appreciate that happening, but I am not amused

), and I have never taken Harvoni or any of the other new HepC meds.

I did have the old interferon/ribavirin treatment back in '02, but I can't remember how this relates to the hair loss, timewise. I also have diabetes type 2 (perhaps caused by the HepC); I have always attributed the hair loss to the diabetes, but who knows? <shrug> Dunno if this helps anyone.

lporterrn · « **Reply #12 on:** January 21, 2016, 01:44:08 pm »

This is a very common type of hair loss, and is associated with many, many things, including diabetes

perineuro · « **Reply #13 on:** January 23, 2016, 07:07:48 am »

I do see those new wisps coming in Lucinda, even though my longer hair continues to thin. But, I'll can that a lot better now, thanks to this "loosing hair" subject on this forum and all of the comments I've read.

hepcme · « **Reply #14 on:** January 23, 2016, 09:27:38 am »

Went to Dr and told him about alot of my sides effects from Harvoni and he just looked blank as many do...everyone claims it to be old age...my bloodwork is excellent especially now since I cut sugar out of my diet , lost 11 lb and am taking a senior vitamin with supps...selenium , iodine, also taking milk thistle , biotin again...I thought this was due to hair loss especially cut back on food..but better choices, I am vegetarian and add protein supp in smoothies...my tinnitis is getting worse , dizziness, sometimes, breathing issues come and go still...even irregulare heart rythmn and slight pain in chest but so so much better than about 7 mo post TX
and the arteries in legs worry me from report of cartoid blockages and heart, breathing issues with this drug...I am increasingly getting well but won't deny that these sides are from the drug...I have been healthy befor HCV and am not THAT old ...60's is not a crippling age as this ...I don't care what anyone thinks or says...there are sides I am eternally grateful for this cure and such a time as this...God Bless all in their healing journey...

lporterrn · « **Reply #15 on:** January 24, 2016, 11:47:29 am »

Thanks for the inspirational note hepcme - it always amazes me that in the face of challenges and suffering, people still move forward, taking control of what they can with lifestyle changes. It's just what I needed to hear today. I guess I can't let a little rain get in between me and my planned walk!

beto · « **Reply #16 on:** January 24, 2016, 12:55:02 pm »

Common sense tells me that fighting a disease like hep C for years or decades would likely compromise our capacity for homeostasis and fighting off other dys-regulations, diseases and conditions. Just being healthy for an uninfected individual today with all we have to deal with is a challenge. If your liver is compromised and not functioning normal for years, It seems reasonable to speculate that, likely we are more vulnerable, especially with ageing conditions. If our immune system is spending so much of its resources combating the HCV viral factory to the tune of a trillion copies daily, that spells "extra burden" to me. It baffles me that many in medicine have such a difficult time believing that once HCV has cleared, we might still be compromised by secondary issues that may have cropped up. There are studies I have seen recently (posted on this forum) that appear to indicate that this "is" going on.

However, I also believe the idea that we can mask health difficulties while infected through denial and there are issues we would have encountered in spite of infection. It troubles me though that we will need lots of double blind studies for many to consider that "cure" does not necessarily spell "healed."

hepcme · « **Reply #17 on:** January 24, 2016, 03:53:06 pm »

Ditto to all that.....especially that Doctors can't acknowledge the fact that the liver has been damaged to the point of death in some..DO YA THINK

I am staying positive , with time and diligent care in consideration of lack of nutritional equal distribution of nutrients to all organs....this too shall pass....
I want my eye sight back or improved at least !!

perineuro · « **Reply #18 on:** January 25, 2016, 12:41:14 am »

That blank look from your Dr. can be discouraging and concerning. I have gotten that look before and I decided that I am going to have to share my experience of my HCV w/cirrhosis treatment (Sov/Rib) with my Dr. so that hopefully together we can get on track with a Post-treatment "treatment".

I see several doctors that I am trying to do this with now. It does get frustrating because my Dr.'s don't seem to interact with each other But I do know my info is right at their fingertips. At first when I started this (pre-treatment, treatment, now post-treatment), I was irritated with my doctors and slowly realized they are soooo busy just following protocol so that they can help sooo many others. Therefore, I have started "graciously" trying to share how it really is! All the while thanking them for their awesome guidance. My Dr.'s actually listen and log it in.... so when I see them again we discuss further... they don't always recall, so I just "graciously" recall my situation... and we are usually back on track... both learning!

hepcme · « **Reply #19 on:** January 25, 2016, 11:47:25 am »

Getting doctors on track with undestanding can be a long wait, I will have to discern myself what to do if i want to feel better , all the typing on his computer is just documentation and like you say protocol at the price of $40 copay..$40 is alot toward food=food is medicine..and now the FDA is fixin that too...lol....I know my body and I did not have tinnitis before or ever like this !! I also never had any heart issues before or ever...I never had lung and breathing issues before or ever...I never had femoral artery problems before or ever...
When I got my first bottle of Harvoni, it has instructions in the box, that had mentioned ,labored breathing, (not sure if it had the heart thing then )...I did start to have the heart thing and dizzyness,labored breathing on Harvoni...I was not going to call the HELP line and risk them taking my Harvoni away, I was dead anyway, so I just took the risk, I had labored breathing and heart palps, some nights thought I would not wake but that wasn't new to me....anyway...I am saying they knew these sides in the beginning and now..even more so now that some people have caroid blockage and heart attacks, but we don't know there history...I am fortunate as I have been healthy all my life other than HCV, amazing with the drugs I used...26 yr sober now , I saved my second bottle instructions , so I went to look that up and it had been taken out...about the labored breathing...changes are happening and I do thank God for my life now to enjoy my grandkids and family...if it bought me time ...I will take it will an abundance of gratitude ...it is only getting better,, slow but sure but until you walk in someones moccasins it is a wasted breath ...and the good thing is ...my labs are good , and on that computer, well , I am a 100%miracle....God knows it !!!

hepcme · « **Reply #20 on:** January 25, 2016, 11:54:50 am »

The ins/doctor did an intake exam for my new insurance program...he raised the table / chair I was sitting on and let my feet hang...he then tested for pulse rate and blood flow, it was low but he said it was not alarmingly low...my legs looked purple but he said it was ok and to mention it to new Doctor... there has to be a test to test the blood flow through the whole body, YES ?...I also get intimant sp? pain under my bicept/arm, axilary artery,they did a cartoid blood flow test as I do get dizziness and that came out OK...no blockage...I think the dizziness is from tinnitis...the body is totally amazing

I fightis thetitis · « **Reply #21 on:** January 27, 2016, 02:00:06 am »

Hey HepCme,
I have had tinnitus for years and since Harvoni it has doubled. You seem to be doing everything right as far as diet. Have you, or are you on an exercise/deep breathing program? I'm mostly veggie and bf Harvoni did all the liver cleanse herbs religiously. I stopped all Herbs & supps during treatment as recommended.
Exercise has been the only link I can make that helps me win the SE battle. When I don't, the headaches, insomnia and tinnitus are brutal. (I started week 10 today w/14 more to go)

I look at it this way. Complications of Hep C was prob going to shorten my life. Perhaps this treatment will too. Who knows? However, one of those scenarios seems certain and the other is a gamble worth taking. I'll take my chances with the intense DAA meds then Hep C symptoms or possible demise..

Within two hours of my first Harvoni I felt physical effects in my brain. A strange tingling sensation that slowly dissipated into a dull headache. So I too am a witness that as the Harvoni scours the bloodstream, and surrounds the virus, it does not come without a tangible physical risk.

After a mild panic I smiled and realized, yeah we may all get early alzheimer's in 10 years, but what the heck, at least we are beating up on this insidious, parasite virus now!
I imagine in another 20+ years a new med will be released that targets and eradicates Hep C 100% possibly in 4 -8 weeks with mild sides.. Seems logical. But for now the best we got is Harvoni and each other's shared journey.. and that's good enough for me.

My daughter asked, "Aren't you concerned that this drug could do more damage then good?" "No" I replied.. "and if it does.. well I guess thats what happens to me." haha everyone has heard the quote... don't sweat the small stuff..PS, it's all small stuff!
Best to everyone,
Greg

hepcme · « **Reply #22 on:** January 27, 2016, 05:40:49 am »

Yep , we are warriors and survivors of the fittest,,,I can't believe I am still alive ..after all the damage and drugs I self administered in the 70"s + I am now reaping the consequenses of my past addictions...yep , it is amazing I have time, again, to enjoy life because of a perscribed drug, Harvoni...there is a God and for what ever reason, I am still suckin oxygen, I will keep ringing around with tinnitis ....60 minutes had a program on Sunday about the now targeted high school kids and the epidemic of heroin...kids are overdosing on bad cut drugs and the cost is so low ,with just one phone call , heroin can be delivered to the door... o my
Luke 21:11
and there will be great earthquakes, and in various places plagues and famines; and there will be terrors and great signs from heaven.

coastal girl · « **Reply #23 on:** January 27, 2016, 03:01:19 pm »

My Harvoni experience during treatment was minimal side effects for which I am grateful. I avoid pharmaceuticals as much as possible! I denied prior treatment, a decision I still believe was the correct decision. After finding out I tested, in a liver scan, with F4 status I momentarily doubted myself and beat myself up a bit mentally, but wait a minute, prior treatment offered did nothing for people with 1a. I am at peace with my decision.
After making my decision to go on Harvoni I had a TIA which left me half blind in one eye which lead me to the hospital for test of which came back carotid artery 90% blocked!! I am 55 year old female, non smoker with low cholesterol (doctors still ordered me statins on my release form, What!) Standard of care my primary care doc said... did not fill prescription.
The reason for this info is to say as I did to many of my friends...I am so grateful this happened "before" starting treatment... because I would most likely blamed it on harvoni ...I am pretty much anti-pharmaceutical!! I am now suffering a bit from joint pain and my already diminished vision is a bit more difficult, hard to judge though being that I was left half blind from TIA, a real bummer when you make your living as an artist!! But with a positive attitude and the help of my NP I'm doing OK

I am very grateful for this cure and will be even more when I reach 12 week post in a month. I love working with my NP because instead of giving me meds to treat a problem they do in depth test, urine and blood to see what exactly is unbalanced and why and we go from there...and yes they do know what has negative effects on the liver...I was told to take baby aspirin by MD, bottle says do not take with cirrhosis so instead I take Nattokinase an enzyme that eats fibrin and doesn't allow clots to form... I could go on forever o this but I won't, I know a lot of folks are closed to this form of healing.
My wish is that we all get through any of these negatives sides and come out feeling better both physically and mentally...I know it's hard to think positively sometimes but, oh so important.
Many years of health to you all!!!
Carol

lporterrn · « **Reply #24 on:** January 27, 2016, 05:07:09 pm »

Thanks for posting Carol. Although you've had issues, your trust in your NP is something that is invaluable. It is heartbreaking when someone has problems and issues with their medical team. And all too common, I am sorry to say.

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Author Topic: One Year Post Harvoni loosing hair (Read 16263 times)