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Hep C Discussion Forum -> On Treatment -> Guess I'm lucky
Post Info TOPIC: Guess I'm lucky
Sed3


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RE: Guess I'm lucky
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mallani wrote:

Just had a haircut, and the barber suggested my hair was getting ' a bit thin'. Please add that to my Sx. Not exactly lifethreatening..........

 Yeah, I'm 50 and have always been blessed with a full, thick head of hair.  I'm not losing it, but it definately is thinning.



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Type 1B - Unknown for 30 years, diagnosed September 2011, started treatment February 2012

8 weeks Incivik - stopped early due to rash.

Continuing Pegasys and Ribavirin until January 2013 - 48 weeks

Undetectable from week 4 --> present
davesf


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Ha, I didn't think my hair was getting noticeably thinner; I certainly didn't see it falling out like some do.  But I was in the barber seat for two seconds and he asked me why my hair had gotten so thin since the last time he saw me.



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All Done Poisoning the Dragon that Used to Poison Me

Genotype 1b  Incivek Combo
mallani


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Just had a haircut, and the barber suggested my hair was getting ' a bit thin'. Please add that to my Sx. Not exactly lifethreatening..........



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
mallani


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Just wanted to add that I'm stuffed due to anaemia. My Hb is 8.1, and all 3 drugs are contributing to this. My neutrophils are 0.91( Ribavirin), and my platelets are 53 (Interferon). There is no way I will take Procrit or Neupogen. My body has enough poison to deal with already. I will reduce the Riba and/or Peg. if my levels become critical, or stop Rx altogether.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Redraider


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I took my first dart of pegasys yesterday and was scared to death after reading about all the sx, but so far I really haven't had any. Slight and I mean slight nausea after I woke which lasted about 30 min. It hasn't been nearly as bad as what I expected. Maybe it's because I've only had the one shot and just the two doses of riba so far. I hope I tolerate the whole treatment as well as this first day. But like I said I was scared after reading about how bad the first shot was for some of us.

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Geno 1a, starting peg, riba, victrellis 7/12/12. VL 1.1, virus undetectable @ week 4,8,12,24
Iris Dragonfly


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Malcolm, I'm glad you posted this, as it has seemed like every one has really been suffering. Not to lessen the grips that you do have, but it could be more encouraging for folks who are still trying to make a decision. Blessings, Iris



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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
mallani


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Hi Baddog, Yep, triple with Victrelis for 48 weeks after 4 week leadin with Peg. and Riba.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
52baddog


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Malcom: 

Are you on the triple treatment?



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Geno type 1b, F1 vl 640,000 enrolled in Gilead's sofosbuvir/ledipasvir -week 1 66, week 2 <25
Shep


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Hey Malcolm--I do agree that the Victrelis seems to be the lesser of 2 evils but for me the major sx was the low blood levels, platelets, significant brain fog, depression toward the end ( get on an AD), some hair loss and lost about 10lbs. The last 5 or 6 weeks were a surreal existance. My heart goes out to all of you guys going 36 and 48 weeks. I really can't complain--it was all managable.

You are a pretty amazing guy! And if you need to complain or rant--go right ahead. I hope everyone lets their voice be heard. It does help to get it out --especially to understanding ears. Keep up the good fight!

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Diagnosed 1996 genotype 1b VL alot tx starting 12/23/11 Victrelis UND week 8!!! 28 weeks of tx

Completed tx 7/6/12--still UND!!!!
alohaKim


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Malcolm,
I agree with you that my Victrelis experience seems much easier than some of the Incivek stories. I haven't had any rash, no anorectal issues, but I have lost more than half my hair, I definitely have brain fog, and fatigue. My appetite comes and goes, some days seem normal and others I can't even look at food. I've lost about 10 lbs. I have continued all my activities except running & hiking. I teach sailing & I am exhausted when I come home, but I manage to get through it, and still have tons of fun every day. No one knows I'm on tx unless I tell them. With all that said though, I have to do 36 weeks on all 3 drugs, including Vic. If I had chosen Incivek (I was fortunate enough to have a choice) then I would've been on Incivek for just 12 weeks and then the Riba & Peg for 36 weeks. For me, I knew I'd never be able to eat 20g of fat three times a day. Never. Couldn't have done it before tx, when I still had a normal appetite and no way could I do it now. Also, I live Hawaii, and I work and play out in the sunshine every day, so the possibility of the rash scared me. I'm prone to weird skin ailments, anyway. Here I am at week 24 of tx, and I do think about how nice it would be, though, if I were only on the riba & interferon. I know that I made the right choice for me. I can see how Incivek could be a better choice for someone else, though.

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Genotype 1a, non responder to Peg/Riba in 2005. Started triple therapy 1-27-12 with Victrelis.  UNDETECTABLE as of 8wk labs (after 4 weeks of Victrelis) 4-3-12. UND at week 8, 12, 16 & 20 of tx. Completed triple therapy Oct 2012. relapsed 10/2012
news


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Malcom,

I was that clever at one time, but not now. Perhaps after two more weeks, when my body and mind start the recovery process, I could muster enough mental prowess to set up such a thing. I absolutely agree it would be a great tool for folks trying to decide what to do. I was not offered a choice, at all, ever, but I hear some folks saying they have been asked to help decide.

Alan



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Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
hrsetrdr


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mallani wrote:

After moaning about being old, cirrhotic, completely stuffed I was jolted back to earth by the Incivik rash photos. You poor buggers.

Yes I'm stuffed, yes my skin is a bit dry ( fixed by some Nivea), yes my mouth is a bit dry ( fixed by tooth gel), yes I sometimes get a headache    ( fixed by a panadeine) but that's it. This is not a Victrelis commercial but I have no hair loss, no rash, no bowel or anorectal problems, no muscular or joint pains, no sleep disturbance, no brain fog (?), no mood swings, no nausea and a normal appetite (although my taste buds have changed) .

Obviously the range and severity of SX for both Vict. and Inciv. is vast, but I will now stop complaining.

A clever person might be able to do a thread where we could list our Sx on say a 0-5 scale, so newbies could have some info on Sx if they are given the choice of drug.

Malcom,   my experiences on Victrellis very closely resemble those you've mentioned.  It dosen't look like I'm going to get that 'freebie' 30 lb. weight loss that my gastro doc predicted.  



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"hrsetrdr"=Tim

Treatment halted on Aug.8,2012 due to vision problem.  6 month post tx labs

Aug.2013 SVR

Be strong when you are weak, brave when you are scared, and humble when you are victorious.
- Unknown

 

 
mallani


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After moaning about being old, cirrhotic, completely stuffed I was jolted back to earth by the Incivik rash photos. You poor buggers.

Yes I'm stuffed, yes my skin is a bit dry ( fixed by some Nivea), yes my mouth is a bit dry ( fixed by tooth gel), yes I sometimes get a headache    ( fixed by a panadeine) but that's it. This is not a Victrelis commercial but I have no hair loss, no rash, no bowel or anorectal problems, no muscular or joint pains, no sleep disturbance, no brain fog (?), no mood swings, no nausea and a normal appetite (although my taste buds have changed) .

Obviously the range and severity of SX for both Vict. and Inciv. is vast, but I will now stop complaining.

A clever person might be able to do a thread where we could list our Sx on say a 0-5 scale, so newbies could have some info on Sx if they are given the choice of drug.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
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