I am in week 20 of 24 of tx and now am see a lot of hair loss. So I am researching the best vitamins and remedies to promote hair growth for after I finish tx in 4 weeks. Anybody have any input? It took 5 months before the hair started to fall out, is this bc the meds are accumulative? So will it continue for the next few months? The hair loss sucks, but I know that the tx was well worth it. Have been UND since week 4 and am Geno 3a, hoping for SVR. My Dr ordered a qualitive (not quantative), because of study showing increased chances of SVR when testing neg at the end of TX. Anyone know about this? Where can I find this if so.
From what I understand everyones hair grows back pretty fast and in great condition once the treatments stop. Some have said it gets thicker too. My sister in laws hair even grew back without her grey hair (she only had light salt) I can only hope.
I'm in week 21 and have lost a lot of hair fairly recently too. Unfortunately I don't think there's a lot you can do about it, other than some basic things. Like keeping your hair short and untangled with moisturizer in it, and avoiding tugging on it with brushes, combs or with aggressive towel drying. You can also get a wig, or just wear a hat (that's what I do). I think nygirl said she got a really nice $500 wig and the insurance co paid for most of it. She was very pleased with it too, so it might not be a bad idea in the interim. Most everyone I've heard from that's gone through this, says their hair grows back thicker than ever after it's all over. But I wouldn't expect it to start growing back until at least a few months after stopping treatment. It'll take time to come back in, but sooner or later your hair should fully recover.
As far as what you said about your PCR: "My Dr ordered a qualitive (not quantative), because of study showing increased chances of SVR when testing neg at the end of TX. Anyone know about this?" You definitely want to be tested near the end of treatment (and throughout treatment really) to verify the virus is clear before stopping. And I would advise using a sensitive test that goes down to like 10 IU/ml or even 2 IU/ml (that's what I used). Obviously being negative at the end of treatment is a critical predictor for eventually achieving an SVR. If you aren't negative at the end of treatment, odds are overwhelmingly against getting your SVR!
I started to lose my hair about the same time big time and it continued all throughout treatment. The INTERFERON does it to us unfortunately and it won't really stop until you stop the med.
But hair WILL grow back nice and good and thick I hear! I'm on week 68 of 72 and I lost a LOT (probably 80% - not in one spot but all over so i have EXTREMELY thin hair everywhere but hardly any) and also it started breaking off and getting shorter and shorter.........
So finally I got a few wigs (ebay...dont buy them from a shop they are WAY too expensive there!) and let me tell you - magic! I felt like my old self again...prior to it I couldn't feel good because no matter what i wore or what great makeup and jewelry I added I felt like I looked BAD. Now I have a bunch of them in slightly different styles and colors and it's GREAT.
The wigs saved me. And since it will take time for the hair to come back..........it will come back really healthy because I wont be styling and blowdrying and using product...it will be sitting happily under my wig.
They have both qualitative tests for both the antibodies and for the virus itself. And yes, anyone once infected with HCV, be they actively infected or if they manage to permanently clear the virus (via natural or drug induced clearance), will always test positive for HCV antibodies (with rare exception). You should not be tested for just HCV AB near the end of your treatment, you want an actual test for the virus itself (called a PCR). Are you sure your doctor isn't planning to test for the virus itself? It's easy for a patient to get confused about all the different tests. Is your doctor a hepatologist or at least a good GI? If not, you might want to keep a close eye on what he/she is doing. We've heard a lot of bad stories here about doctors who don't specialize in liver disease (and aren't particularly knowledgeable about the specifics of HCV and its treatment) making some bad calls concerning the treatment of HCV patients.
Yes we do PCR's but those are quantative tests and they are the sensitive to 5IU type, but she said a qualitive test for the virus. This is what confused me, as I thought that was the test that we will always test pos for. She mentioned a new study that shows increased chances of SVR when you test neg for the qualitive. I thought this was a rare occurance to test neg, She says otherwise. I will have to ask her about the test when I go to get my results on the 24th. Yes she is a liver specialist here in LA. Quite good
There are several studies suggesting that a negative TMA at end of treatment is helpful in predicting SVR. From 10-30% (or so) of patients tested by PCR will show residual virus if tested by TMA. I believe the PCR testing that was compared to TMA was not the most sensitive available. Google up 'EOT TMA PCR' without the quotes and you can read about it. Good luck to you....
My hair and eyebrows and some eyelashes too fell out. I looked like I had male pattern baldness! It was around week 16, so at week 24, I was lookin' pretty light in the hair.
The GOOD NEWS is at approximately 4 months post treatment you will notice all your hair growing back. My scalp starting itching and the scalp skin started to peel. I'm guessing 'cause of all the activity going on up there. But the hair really grows back like mad! I feel like a CHIA PET!. It's so thick and I'm using Jojoba Oil and Aloe Vera from the health food store, also a little Tea Tree oil as well. I mix them together and leave them on my head over night to help the peeling and hurting scalp and it makes your hair look really shiny and healthy.
Good luck, hang in there. You will get your hair back. Just be patient. This is what we all learn from this stupid disease....PATIENCE,PATIENCE,PATIENCE. Hurry up and wait.
I should make it clear I'm not a doctor, just a reasonably well informed patient (so keep that in mind when I offer advice). But I'd say if you have a good hepatologist, the odds are very good she knows what she's doing. The test she's ordering for you is probably appropriate. I would suspect it's a very sensitive qualitative test for viral presence. At this point you're not worried about just how much virus you have (quantitatively), but whether or not there is any virus *at all* left in your body. Hence, she may be using a supersensitive qualitative test that can detect the presence of the virus to a very low level, albeit not quantifying it. If that's the case (which it probably is), I'd say that's just fine, and it makes sense from what I know.
Although from what I've read and seen here (and elsewhere), usually a sensitive PCR test is used for this purpose. LabCorp has a PCR test that goes down to 2 copies, which is a very sensitive test. And a PCR test is both qualitative and quantitative as long as your viral load is within it's quantifiable range. If you score a measurable viral load, then by definition you've simultaneously scored a positive in a qualitative sense. Also, recently I've heard of qualitative/quantitative hybrid PCR tests that can provide a qualitative (+ or -) result between a certain (low) range, and can also provide a numerical (quantitative) result if you have a viral load above a certain threshold. For instance, I'm currently in a drug trial, and the PCR test they use can qualitatively determine the virus' presence between 10 IU/ml and 29 IU/ml, but can provide a numerical value (quantitative) for values 30 IU/ml and higher.
Amber: My Dr ordered a qualitive (not quantative), because of study showing increased chances of SVR when testing neg at the end of TX. Anyone know about this? Where can I find this if so.
It's possible your doctor is making reference to a recent study that showed a certain per cent of EOT PCR negatives (via quantitative testing) were actually TMA postive (via qualitatitve testing). 100 per cent of that group (the TMA positives) did not achieve SVR.
Basically all it means is to get the most sensitive test available at EOT if you want to know if you have a chance at SVR. That said, why not also order the qualitative right now (at week 20) instead of waiting until week 24? That would give you the option to extend tx should it come out positive and should that fit into your tx strategy. Or maybe your doctor is ordering the qualitative now, I wasn't sure from the post.
Amber: Yes we do PCR's but those are quantative tests and they are the sensitive to 5IU type, but she said a qualitive test for the virus. This is what confused me, as I thought that was the test that we will always test pos for.
At one point, the qualitative tests were the most sensitive but now some quantiative tests have caught up in that regard. For example, if you're current viral load quantiative tests are sensitive down to 5 IU/ml, then that's about as sensitive as the qualtitative tests that also often go down to 5 IU/ml. It's possible that your doctor is simply ordering the qualitative because it's nearing the end of treatment and not because she thinks it's more predictive of SVR than an equally sensitive qualitative. Because it really isn't -- both would theoretically be equally predictive.
As a personal example, I took Quest Diagnostic's Heptimax test during treatment. It's a two-part *quantitative* test that goes down to 5 IU/ml. When I finished treatment I decided to take Quest's HCV RNA Qualitative TMA. As it's name suggests, it's a *qualitative* test with the same sensitivity of Heptimax -- 5 IU/m. Truth is, I could just have easily had the Heptimax run again at end of treatment and it would have given me just as good data as the qualitative. I picked the qualitative for purely subjective reasons including the particular lab that does those tests.
Tee hee, my husband for some wierd reason lost the hair on his back the year before his dx. A mole that he'd had for his entire life disappeared off his face. I figured it was a 50th birthday present from The Big Guy as my husband hated the hair on his back and hated the mole, although he did kind of like his eyebrows. He also lost most of his eyebrows. Who knows what that was all about - do you blame liver troubles, psoriasis, age, or some other auto imune wierdness? 6 weeks into peg/riba the hair on his back started growing back in (as well as his eyebrows). No mole yet. Since the top of his head went hairless in his twenties there is probably no hope for that. He's happy about the eyebrows but unhappy about the back hair. I think it's all hilarious! Just keep reminding yourself it's a year out of a lifetime and once in awhile you gotta laugh or you'll spend the year crying! Humor goes along way.
This is from a previous post from Mike Simon simplifying the difference in the tests. It might not be relevant to your question, but it helped me:
"Qualitative RNA detects if you have an active HCV infection.
Quantitative RNA determines how much active HCV you have - viral load.
Antibody test determines whether you have ever been infected.
I had a quantitiive test at 4 weeks, getting the heptamx tomorrow just for peace of mind.
Mine is comming out quite a bit. My husband says that I continually loose more than he has on his poor head. I notice in back is getting thinner. I think that is where I rub my head on the pillow. I am being very careful (as much as one can be) and using one of those very wide combs and holding my head where I am combing so there is no pulling. I cust my hair about 6 inches and now it is chin length. If I need to I will go shorter. My curly hair is comming back....UGH!!! I liked it better straight. I am hoping it will hang in for the last 10 tx's. We will see. I may join NYGirl on Ebay shopping for wigs. I have checked them out and some look pretty good. I may change my color from brunette to blond...everyone else does.
Just wanted to pass on my experience regarding hair. Mine started to fall out at about 16 weeks, not in clumps or anything, it just thinned everywhere - probably lost 60% - but you know, it made it much easier to handle! My hair also started breaking off at the ends, so did get shorter, but I am now on week 50 and it is not really falling out at all now, seemed to stop around week 40 for me, and my hair is really thickening up amazingly. I got a good selection of scarves and hairband and this actually made more of a feature of my hair than how it was pre tx, I'll probably be moaning when it all comes back!!!!!
Rather than losing my eyebrows etc I have found that they have grown absurdly long, not sure what you do about that - get some eyebrow trimmers maybe - as it is not the most attractive sight!!
Good luck and try not to worry about the hair - it will be fine
I can't seem to get to you via email - probably since changing computer - get in touch and let me know how you're doing
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