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mehru


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RE: New to Hepcfriends
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Malcolm,

Looks like a fabulous fish you caught this summer.  Thanks for getting back to me on your status, it really helps to get feedback from others about these details. It makes sense that your platelets have been one of the last to become stable. One dr told me it's a slower process for the cirrhosis to heal once inflammation from hcv is gone. I watched platelets get low over the years but they really dropped significantly when cirrhosis appeared.  

Yes, I'm glad I had the opportunity to give it up before the victrelis started, the timing was right to get off it.  Thanks for letting me know about the effects Peg can have, I was not aware that others had an allergic reaction. The doctor put Peg on my allergy list of drugs to avoid. I did not have a problem at all with the old intron inf that was injected 3x week outside of the usual anemia, depression etc, etc.The Peg seems to be stronger, more potent.  I'm going to try to hang around until the opportunity comes up to try the new DAA's.  It may be a while unless there is a study:

HCV treaters will soon face a major dilemma in management of HCV genotype 1.  If approved, both simeprevir and sofosbuvir will be indicated for treatment of HCV genotype 1, but only in combination with pegylated interferon/ribavirin. (Sofosbuvir approval is also expected for genotype 2/3, just with ribavirin.)

I have a feeling all of the above is going to change sooner than predicted with the largest population of harder to treat large GT 1's out there.. It's just too costly for insurance companies to continue to carry the cost of HCC and liver transplants.

My meld score is hanging in there. Had an endoscopy **no varices found.  It appears that portal hypertension is hard to predict even when gastroscopy/endoscopy appears normal.  I have a chronic gallbladder problem that has been worsening in recent months.  Had a HIDA scan done and gallbladder is functioning mildly below normal (but it does not feel mildly below normal to me).  My doctor did not order the HIDA scan and probably would not have gone there but since the ER doctor ordered it he told me that he did not want me to have gall bladder surgery AT ALL, reason being that the surgery could 1) cause infections or death, or 2) trigger a patient who is compensated to become decompensated. He said he's seen it too many times. Whatever, I just have to be careful.  I'm feeling optimistic about getting on the new DAA's without the Peg even though it's not looking like it's going to happen very soon for anyone who is hcv cirrhotic genotype 1a.

And yes, I'm oh so familiar with the AFP marker test and HCC watch with CT, MRI or ultrasound I hear about it every 3 months.  My AFP marker fluctuates from high to normal over the years. That's one very important program to be very diligent about and to try not to miss or delay these tests. HCC can grow very fast and that's one way to get put on a transplant list and bumped up if malignancy is found. That's one thing Insurance companies do not want to pay for. Thanks for your input Malcom.



__________________

Geno 1a, Stage 3-4 early cirrhosis (labs, recent biopsy, MRE elastography to confirm), 1999 rebetron trial with inf/riba *non/partial responder at 16 wks.  4/2013 started victrelis triple tx - had to discontinue after 2 weeks due to rash.

 
mehru


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Hi, thanks for your message a few weeks back. Sofosbuvir/Ledipasvir would be a good one.  Were you able to get in a clinical trial on that combo?  sun.gif



__________________

Geno 1a, Stage 3-4 early cirrhosis (labs, recent biopsy, MRE elastography to confirm), 1999 rebetron trial with inf/riba *non/partial responder at 16 wks.  4/2013 started victrelis triple tx - had to discontinue after 2 weeks due to rash.

 
mallani


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Hi Robin,

I finished my course in Feb 2013, and I'm happy to say I'm still Undet. at 28 weeks post Rx, so I'm calling that SVR. I'm also happy that my LFT's have almost returned to normal, for the first time in over 20 years. My ALT is still up a bit, and my platelets are still low, but all that should improve. My liver has decreased in size and is still firm, but not rock-hard. I'm hoping for a decrease in fibrosis, and I'll have a Fibroscan in a couple of weeks. I'll have VL tests every 6 months and I still need imaging to exclude HCC, but I'm back to preRx normal.  Tx was hard with a severe anaemia, but it was worth it. I stayed on the full dose of all 3 drugs for the 48 weeks.

You may be allergic to the Polyethylene glycol part of Peg. as you didn't have any problems with the old interferon. So, you should avoid Peg.  As you had not started Victrelis, you can take an antiprotease like Simeprevir, preferably with another DAA like Sofosbuvir.  You probably should have Riba as well, and I would want to do at least 24 weeks. Personally, I would wait a bit longer, and use Sofosbuvir and an NS-5A blocker like Ledispavir or Daclatasvir.  As you are Geno. 1a, I'd want Riba as well.

Can you wait? I'd get my platelets, albumin, INR (or clotting time), ALP, bilirubin and ALT done. If a Hepatologist thinks they are OK, you can probably afford to wait.  I'd also have a gastroscopy to make sure I didn't have portal hypertensive gastropathy or varices.  Naturally, you'll also need liver imaging by Ultrasound or MRI.  All this is only my opinion, so be guided by your own Hepatologist, who knows your details. Good luck!



__________________

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
mehru


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Hi Malcolm,

Sorry~ this past few weeks have been too busy. Thanks for your greeting.  What month did you complete triple tx in 2012? How did you do 48 weeks at your age and gt 1b?  You deserve a medal for bravery and endurance.

Victrelis is the one I was set out to do. Luckily had to quit before the lead-in was over. It was a massive rash all over body with shingles type rash on my back and under arm. Did not expect that since i took inf/riba in 1999 for 4 months, it was tough ~ depression, anemic, sick but nothing like Peg/riba. I'm glad it ended suddenly as I could not imagine 48 weeks of high pill load and side effects on that level. My meld score is still hanging in although it makes me nervous as meld scores are a delicate balance and i'm not feeling so great these days.

So, every now and then you get your srv labs checked and it still says undetected?  What is that like?  How does it feel to go from compromised to srv? Do you still feel that stiffness in your liver?   Or did you ever notice that with cirrhosis?  I still find the concept of srv cure so new and amazing. It shows that life itself is indeed progressing to happiness.  I've attached this article on the subject, let me know what you think.

 http://hepatitiscnewdrugs.blogspot.com/2013/06/both-simeprevir-and-sofosbuvir-likely.html?m=1

 

 

 



__________________

Geno 1a, Stage 3-4 early cirrhosis (labs, recent biopsy, MRE elastography to confirm), 1999 rebetron trial with inf/riba *non/partial responder at 16 wks.  4/2013 started victrelis triple tx - had to discontinue after 2 weeks due to rash.

 
Zlikster


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Hi Robin!

i hope you gonna kick hcv out this time. Sofosbuvir + Ledipasvir sounds like a great combo, if you can get in on that clinical trial.

best



__________________

GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!
mehru


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Malcolm, Will get back to you soon ..had issue that came up. robin



__________________

Geno 1a, Stage 3-4 early cirrhosis (labs, recent biopsy, MRE elastography to confirm), 1999 rebetron trial with inf/riba *non/partial responder at 16 wks.  4/2013 started victrelis triple tx - had to discontinue after 2 weeks due to rash.

 
mallani


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Hi Robin,

Yes, Sofosbuvir may be available as early as Dec 2013, but it will only be used with Peg and Riba. I wouldn't want that, if I was not Interferon sensitive. You may need to wait for one of the NS5A blockers, either Ledipasvir or Daclatasvir, which may take another year or so. I had compensated cirrhosis for at least 5 years before I did my 48 weeks of triple with Victrelis, and it appears to have worked.  If your albumin, bilirubin, platelets and INR (or Prothrombin Time) are normal, the clock is ticking fairly slowly! Cheers.



__________________

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
mehru


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Hi Malcom,

Had biopsy in April to confirm cirrhosis as dr. suspected by changes in labs. Big changes in overall health and how my  body functions lately. Clock is ticking, aiming for studies. Possible approval on one of gileads all orals might happen as early as 12/2013 ?? God willing approvals coming soon for all concerned. 



__________________

Geno 1a, Stage 3-4 early cirrhosis (labs, recent biopsy, MRE elastography to confirm), 1999 rebetron trial with inf/riba *non/partial responder at 16 wks.  4/2013 started victrelis triple tx - had to discontinue after 2 weeks due to rash.

 
mallani


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Hi Robin,

Welcome to the Forum. Sounds as though you are not Interferon sensitive, so you'll need a Rx without Peg. You'll also have to avoid the antiproteases, so the Gilead combo will be the one for you. Can you afford to wait? What do you mean by " early" cirrhosis- have you had a recent biopsy. I only ask because that will determine whether you can afford to wait for a couple of years. Cheers.

 



__________________

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
mehru


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Thanks again Jill, you've been very kind and a tremendous  help   biggrin



__________________

Geno 1a, Stage 3-4 early cirrhosis (labs, recent biopsy, MRE elastography to confirm), 1999 rebetron trial with inf/riba *non/partial responder at 16 wks.  4/2013 started victrelis triple tx - had to discontinue after 2 weeks due to rash.

 
mehru


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Early cirrhosis meaning very beginning of compensated stage.  I suppose one could hang in there for a while and face decompensated end stage either very soon or in a few years.. Somehow, I have a strong feeling not to wait around to find out, IF I have any say in the matter. Cheers!



-- Edited by mehru on Friday 23rd of August 2013 03:33:04 AM

__________________

Geno 1a, Stage 3-4 early cirrhosis (labs, recent biopsy, MRE elastography to confirm), 1999 rebetron trial with inf/riba *non/partial responder at 16 wks.  4/2013 started victrelis triple tx - had to discontinue after 2 weeks due to rash.

 
Cinnamon Girl


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By the way, there is a limit to the amount of characters you can write in the Signature box.   If you`re still having problems, tell me what you`d like to include and I can do it for you.



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Cinnamon Girl


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Hi again, for some reason it didn`t save and there`s nothing in there now.  I can`t get it back for you, unfortunately, but try it again and make sure you click on `Save Changes`.  smile



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
mehru


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Posts: 22
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Jill, just added info to signature box as instructed. Testing it now.

I thought I clicked on SAVE but it did not register apparently.  Is there anyway to retrieve what I entered? 

Looks like it did not save. 



-- Edited by mehru on Thursday 22nd of August 2013 04:08:50 PM



-- Edited by mehru on Thursday 22nd of August 2013 04:10:55 PM

__________________

Geno 1a, Stage 3-4 early cirrhosis (labs, recent biopsy, MRE elastography to confirm), 1999 rebetron trial with inf/riba *non/partial responder at 16 wks.  4/2013 started victrelis triple tx - had to discontinue after 2 weeks due to rash.

 
mehru


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Thanks so much Jill.



-- Edited by mehru on Thursday 22nd of August 2013 04:09:36 PM

__________________

Geno 1a, Stage 3-4 early cirrhosis (labs, recent biopsy, MRE elastography to confirm), 1999 rebetron trial with inf/riba *non/partial responder at 16 wks.  4/2013 started victrelis triple tx - had to discontinue after 2 weeks due to rash.

 
mehru


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Hi everyone! confuse 

How do you add previous tx and geno info to profile where it stays at the bottom of the page whenever you post?  Would it be in the bio box?  

I like this forum, not so distracting like other forums with all the ads. 



__________________

Geno 1a, Stage 3-4 early cirrhosis (labs, recent biopsy, MRE elastography to confirm), 1999 rebetron trial with inf/riba *non/partial responder at 16 wks.  4/2013 started victrelis triple tx - had to discontinue after 2 weeks due to rash.

 
Cinnamon Girl


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Hi, Mehru, welcome to the forum!  Yes I agree, `ad-free` is much better and that`s how we like to keep it.  smile

To answer your question, all you need to do is look in the `Profile` box in your `User Details` and click on `Signature`.  Whatever you write in there will then appear at the bottom of all your posts. 

Looking forward to hearing more from you! 



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
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