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1369416 tn?1278272357

massive hair loss

I have been in treatment for 24 weeks now and the medication has worked,  but I am very upset about my hair loss.  It appears to be alopecia and I am not sure if the steriod injections will help.  Has anyone experience this and what did you do?
Thanks
budlady5
13 Responses
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87972 tn?1322661239
Hi there,

This place is a virtual alphabet soup of acronyms; they can be confusing at first.

‘PI’ refers to ‘protease inhibitor’ class drugs; they are experimental at this time; available in clinical trial only.

‘SOC’ refers to “Standard Of Care”, or the current pegylated interferon/ribavirin combo used to manage HCV.

For a comprehensive list of abbreviations and acronyms, see this web page; it’s also available here to your lower right in a box entitled ‘most viewed health pages:

http://www.medhelp.org/health_pages/Hepatitis/Common-Hepatitis-C-Acronyms/show/3?cid=64

Welcome to the discussion group, by the way—

--Bill
Helpful - 0
1369416 tn?1278272357
Yes I am geno1.. but I don't mean to sound dumb but what does PI mean and SOC treatment mean?  
I am very depressed at the thought of continue this medicine for that much longer.  I don't have a lot of help although my side effects are bearable most days.  I guess I am just feeling sorry for myself today!  
On the other hand I didn't come this far to give up either.   Let me know what those initials stand for.  Thank you!
Helpful - 0
179856 tn?1333547362
i bought a bunch of wigs on ebay - they made me feel a bit more normal about myself and some of them were better than the hair I started out with.

What genotype are you?  I am assuming you are a geno1 if so then yes the doctor is talking about 48 + 18 more = 72.  As a late responder that is the best way to get every bit of the odds in your favor as you can.  Either that or stop and wait to see if/when the PIs come out and then add one of them to your regular SOC treatment.

The closer you are to UND at week 4 the better your odds. I too started with a low viral load (568,000) and sometimes unfortunately we have it much harder than those with a very high viral load.  I think it's because our immune systems were already fighting the disease and so when we 'ramp up' with interferon it doesn't have as big an effect.  That is just my guess though.  I had a great response at week 4 but unfortunately held onto those last stupid 400 until around week 24 somewhere.  So I did the 72 and have been cured over three years.
Helpful - 0
1369416 tn?1278272357
My VL was at 63 and my doctors suggested stopping treatment.  I was dishearten b/c I started out at 312,000,+   But my next set of labs came back undetected.   But we all the side effects I was under  the understanding that since I was good that we would do another 18 weeks.. But now that I am reading everyone's posts  I think I misunderstood my doctors and he didn't mean 18 more weeks he meant the original 48 weeks + 18 more.  I am so confused and I cant seem to get anything straight.  

I think everyone is correct, the alopecia must be from treatment and it seems futile to go through the injections to grow back hair that is just going to fall out.  I guess I should start shopping for some hats.   Hair - Smair at least I will have my liver!  
Helpful - 0
179856 tn?1333547362
In my 72 weeks I lost about 80% of my hair.  Let me tell you though it grew back like a weed..........it's longer now than it ever was.  Hair grows about a half an inch a month but believe me - it seemed to go much faster than that.

If you are just UND at week 21 certainly you (like I did) should consider extending to 72 to get your odds back up again.  At week 21 they are very low but NOT impossible.

I've been cured for over three years.
Helpful - 0
Avatar universal
I am experiencing the same thing at 16 weeks.  I just attributed it to the treatment.  I was planning on just cutting it short and waiting for it to return once finished with the treatment  I would address your halopecia after treatment is done after you have had a chance to see if your hair growth returns.  Good luck and hang in there!
Helpful - 0
691935 tn?1421027090
I can understand your anxiety regarding your hair loss given your past problem but hair loss is very much a sx of tx.  Eight months post-tx and my hair is growing faster than ever before.

More importantly, Trinity is correct, first things first, work on clearing the HCV and try to accept the hair loss for the time being.
Helpful - 0
Avatar universal
Was your VL + until finally at 21 weeks you came back undect.?  Does that mean you are on an extended treatment time of 72 weeks?   What was your viral load to start and at 12 wks?  I'm approaching my 12 week treatment timeline.  My doc has rec. stopping at 12 weeks if still detectable.
Helpful - 0
Avatar universal
If you didn't become undetectable  until week 21 you should consider extending your treatment to at least 72 wks.  Your odds of attaining SVR are very low now.  
Most likely the hair loss is associated with treatment drugs.  You don't want to take steroids while treating if at all possible.  Hair loss seems like the least of your worries at this point.  

Trinity
Helpful - 0
1369416 tn?1278272357
I have had alopecia  five years ago un-related to HCV medications.  I was successfully treated with steriod injections into scalp and after many injections my hair grew back.  I was not sure if I develop alopecia again or if it is directly caused from the medication.  My doctor could not give me an inform answer.  He said if it cause from the medication it will grow back... if it is not then it wont.  {I know helpful}   I have genotype 1 and was very surprise to see the medication finally worked but not until 21 weeks into it.  

I am very glad to have found this website.  It sure helps to know there are other people to discuss problems with!  
Helpful - 0
Avatar universal
I'm at 24 weeks as well and have same massive hair loss. I have 24 weeks to go. I'm told the hair will grow back after treatment.
Helpful - 0
87972 tn?1322661239
I don’t understand your reference to steroids; hair loss (alopecia) is temporary with HCV therapy, and should begin to resolve spontaneously post treatment. Give it a couple of months; color, volume and body should begin to return to normal. Some people report long term changes in texture; straight hair might grow back wavy, etc.

Bill
Helpful - 0
Avatar universal
I'm at 11 weeks, and have had significant hair loss.  Are steriods used for this sx?  Good news for you is the meds are working, wondering when you cleared, and what geno type you are.
Helpful - 0
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