Author Topic: Seasoned Treatment Veterans (Read 19695 times)

dragonslayerinprogress · « **on:** August 27, 2016, 06:26:14 am »

I am doing a poll at my daughter's request. For all of you with cirrhosis and have achieved svr. ..
have any of you reversed to a stage 3 or better and how long did it take?

Hiw long were your cirrhotic? (Estimate)

If albumin levels and bilirubin in levela were not normal...are they now?

Energy levels? Back up or not and how long did it take?

Did your platelets come back up and how long?

She's been studying this and was told it could take 2 years for liver to start healing. So why not ask the experts here.
Thanks for the input.

Philadelphia · « **Reply #1 on:** August 27, 2016, 07:46:18 am »

I've been doing a bit of reading about this too, so will be interested to see results.

To answer your questions:
I don't think I've gone to f3, but I believe (and so does my specialist) that I was tottering on the verge of child Pugh b and after treatment I am firmly back in the child Pugh a camp.

Albumin and bilirubin were not good - bilirubin was around 40 and albumin was dropping. Albumin now completely normal and bilirubin sits around 16-19. That's okay.

Energy levels still not 100% but I work full time as a school principal, I have a fair few other activities going on as well as work (voluntary stuff, sports organisation stuff) and I'm 57. So I'm entitled to be tired at the end of the day. I'm doing okay but I really enjoy my weekends and do very little in them.

Platelets still crap. 59.

dragonslayerinprogress · « **Reply #2 on:** August 27, 2016, 08:16:44 pm »

I'm not sure how to read your bilirubin. The normal range according to the lab tests I've researched or seen go like this

Albumin 3.4-5.4
Bilirubin 0.3-1.0

So are you saying yours was 40.0 or so?

Philadelphia · « **Reply #3 on:** August 27, 2016, 08:32:44 pm »

Australian lab values are different to US ones. Normal range in our labs is 0-18

dragonslayerinprogress · « **Reply #4 on:** August 28, 2016, 05:00:21 am »

Wow. That's quite high. So my kid is trying to correlate newly diagnosed cirrhosis and also one's that have had it some time to see how they recover. Maybe she can turn in her findings to someone as a follow up :-)

Philadelphia · « **Reply #5 on:** August 28, 2016, 08:50:14 am »

We measure in µmol/L whereas you measure in mg/dL. Gives different numbers but when you convert them they show the same range.

Philadelphia · « **Reply #6 on:** August 28, 2016, 08:52:25 am »

So my 16 is the same as your 0.9. If that makes sense.

dragonslayerinprogress · « **Reply #7 on:** August 28, 2016, 07:03:47 pm »

What would your 40 have been?

Philadelphia · « **Reply #8 on:** August 28, 2016, 07:38:06 pm »

2.3 but at one point early in treatment it was 8.9. That was entertaining, if you don't mind looking like a minion!

dragonslayerinprogress · « **Reply #9 on:** August 30, 2016, 03:27:47 am »

wow! yea, that's a bit high. Do you mind me asking how long you have been cirrhotic? I think my bili topped out at 1.9 but in one lab done in house it was 2.1 or so I think. Albumin level was down to 3.0. That's up to a 3.6 now so I'm so happy for that. It's just these past 3 years where things started to go downhill. I really beat myself up for not doing treatment in 2014. I could have avoided the whole cirrhosis diagnosis. Fear is really a bad thing. Especially of the unknowen :-(

Lynn K · « **Reply #10 on:** August 30, 2016, 04:07:59 am »

Have any of you reversed to a stage 3 or better and how long did it take?

Not so far as I know. My pre-treatment Fibroscan was 27 1 year post was 33 but I don't think fibroscan is that precise so I don't think there really was any difference.

How long were your cirrhotic? (Estimate)

Followed closely since hep c diagnosis in 1990 with liver biopsy every 5 years. I was F3 in 2003 and F4 on Biopsy in Jan 2008 at the time they called it early cirrhosis. So as of now officially had cirrhosis for 8 years and 8 months.

If albumin levels and bilirubin in levels were not normal...are they now?
Albumin back in 2014 was 4.7 scale 3.5 to 5.5 g/dL
Bilirubin was 0.8 scale 0.1 to 1.2 mg/dL
Platelet count was 93
AFP 26.6
INR 1.1

March 2016
Albumin 4.6 scale 3.5 to 5.5 g/dL
Bilirubin 0.5 scale 0.1 to 1.2 mg/dL
Platelet count 111
AFP 10.8
INR 1.1

Energy levels? Back up or not and how long did it take?

Heck I am 58 how am I supposed to feel? Last time I did not have hep c was 37 yeas ago so I do not have a frame of reference as to what is normal. I am working 2 jobs one full time one part time does that count?

Did your platelets come back up and how long?

See above. A little bit maybe hard to say still really early only finished my 24 weeks of treatment May 2015

Good luck to her still a bit early I think but we will see what happens over time. Harvoni treatment was only approved in Oct 2014 so not even 2 years ago.

Those with advanced cirrhosis like me were often treated for 24 weeks. I started treatment in Nov 2014 so I was one of the first cirrhotics treated.

AllShookUp · « **Reply #11 on:** August 30, 2016, 06:43:37 pm »

Good questions. I often wonder the same. I hope more folks in this boat contribute to this topic
My liver doc who works at a transplant center said that it would probably take two years or so for liver improvement provided one follows a healthy liver lifestyle.
My most recent labs are trending a little bit towards the normal zones.

dragonslayerinprogress · « **Reply #12 on:** August 31, 2016, 02:34:54 am »

I hope more people join in too, allshookup. Your platelets were 35? Have they st least improved some? I had an enlarged spleen and platelets down to 47. My spleen looked good a few months ago during ultrasound but now it shows borderline fatty liver. No mention of cirrhosis in any of my ultrasounds. Going to do a fibroscan in 4 weeks and may think about biopsy down the road.

Lynn K · « **Reply #13 on:** August 31, 2016, 02:43:00 am »

I will be doing my every 6 month abdominal ultrasound and blood testing in October very interested to see if my platelets continue to rise or if my liver and spleen return to normal.

I did have a small amount of ascities noted on previous abdominal ultrasounds but since treatment my last ultrasound did not see any ascities so that appears to have resolved. I still have lower leg edema so continuing on spironolactone diuretic.

So far still required to have upper endoscopy annually to monitor for recurrence of esophageal varicies that happened in 2012 maybe some day they will let me go for 2 years.

AllShookUp · « **Reply #14 on:** August 31, 2016, 02:38:24 pm »

To Dragons platelet question. Short answer is yes.
My platelet level early August 2016 test were 45 which it was back in October 2014. I will have some more blood work in three weeks. I hope that level is still around that number.
My platelet history for the last two years has been complicated because during winter of 2014-15 I was treated with low dose radiation for stage 1 Non-H stomach MALT lymphoma (a condition more frequently encountered by people with HCV and will often go into remission after HCV is eliminated). The RTX knocked my platelets down into the 20's. The cancer was eliminated but I do wonder about collateral damage to liver and spleen,etc in regards to platelets. Platelets came back to 35 in November 2015 when I started Harvoni and Ribavirin. During HCV TX it was necessary to take weekly injections of Procrit (epoetin alpha) due to riba induced anemia. Platelets dropped back to 20's for a little while after quitting Procrit. In May, they were back to 41. Late June, I had surgery for a hernia repair during which they pumped in some platelets. I took spironolactone and Flowmax for 35 days during recovery which I don't think affected platelets.
Did all that confuse you or put you to sleep? It sure wore me out. I have more comments but I need a break - later

AllShookUp · « **Reply #15 on:** August 31, 2016, 08:31:32 pm »

Round Two - continuation of last post
In regards to fatty liver, I read that cholesterol can be a contributing cause. Some folks on this forum have reported increased levels of cholesterol after elimination of HCV. I will find out if my has taken a turn to the bad in three weeks. Another thing to consider about your possible fatty liver is that sometimes the people who interpret various scans don't always get it right.

To Lynn K - reversing your ascites is very encouraging. I assume you cut back on sodium intake in addition to taking spironolactone.
I am a little confused about your varices. Are saying that they were detected in 2012 and then they diminished? The reason I ask is that three months ago my second tier GI reported that I had small stage 1 w/o red wales varices of the esophagus. I call him 2nd tier because he prescribed me 40 mg. Nadolol daily. My liver specialist has since then confirmed my doubts about taking Nadolol at such an early stage. I stopped taking the Nadolol last week and I feel much better. I am seriously thinking about finding a new GI for next endoscopy.

Lynn K · « **Reply #16 on:** August 31, 2016, 08:44:02 pm »

I do not have any special diet. Today I had an egg mcmuffin and a mcdonalds salad for lunch. Probably a slice of pizza for dinner

After I was diagnosed with cirrhosis I had an upper endo which showed grade 1 varicies. Two years later repeat endoscopy gread 2 varicies. One year later in 2012 on 3rd upper endoscopy I was found to have grade 3 varicies. I underwent 4 upper endoscopies over the next 4 months to have the varicies banded. Since then I have been monitored every year for recurrence and so far they have not returned.

I did not have wale marks on the varicies but they were grade 3. I was not prescribed a beta blocker as the goal with using a beta blocker is to get HR below 60 BMP and as I sit here my HR is about 57 BPM.

I have a link here to a doc from the AASLD about varicies.

https://www.aasld.org/sites/default/files/guideline_documents/GastroVaricesand2009Hemorrhage.pdf

Quoting from the article:

Recommendations
5. In patients with cirrhosis and small varices that
have not bled but have criteria for increased risk of
926 GARCIA-TSAO ET AL. HEPATOLOGY, September 2007
hemorrhage (Child B/C or presence of red wale marks
on varices), nonselective beta-blockers should be used for
the prevention of first variceal hemorrhage (Class IIa,
Level C).

6. In patients with cirrhosis and small varices that have not bled and have no criteria for increased risk of bleeding, -blockers can be used, although their long-term benefit has not been established (Class III, Level B).

7. In patients with small varices that have not bled and who are not receiving -blockers, EGD should be repeated in 2 years (Class I, Level C). If there is evidence of hepatic decompensation, EGD should be done at that time and repeated annually (Class I, Level C). In patients with small varices who receive -blockers, a follow-up EGD is not necessary.

For my situation back in 2012

9. In patients with medium/large varices that have
not bled and are not at the highest risk of hemorrhage
(Child A patients and no red signs), nonselective
beta-blockers (propranolol, nadolol) are preferred and
EVL should be considered in patients with contraindications
or intolerance or non-compliance to beta-blockers (Class I, Level A).

Note: EVL=Endoscopic variceal ligation

AllShookUp · « **Reply #17 on:** September 02, 2016, 05:55:54 pm »

Thanks for the AASLD link and sharing the progression and control of your varices.
Good info which begs the question of why some people with varices develop wales/red spots and some, such as yourself, do not.

Lynn K · « **Reply #18 on:** September 02, 2016, 08:51:37 pm »

I guess we are all different is all I can say about that

AllShookUp · « **Reply #19 on:** September 06, 2016, 01:52:54 pm »

Indeed, we are all different. I reckon we all will find answers to our healing as time moves on. I hope your October results are good.

Lynn K · « **Reply #20 on:** September 06, 2016, 03:56:16 pm »

So from what I read on the information for following patients with grade 1 varicies taking a beta blocker is an option but the long term befit it hasn't been established but taking beta blockers means you do not have to do a 2 year follow up per item 6.

The other option is to do nothing as far as taking a beta blocker and have a 2 year follow up endoscopy. This is what my doctor went with for me.

You said your result was grade 1 w/o wale marks so as you are without the red wale marks either taking a beta blocker or having a replete endoscopy in 2 years are your options it seems. I guess the thinking is taking the beta blocker decreases the possibility of the further progression of the varicies to larger size.

If they do progress then either you would have to stay on a beta blocker or if you are intolerant of the drug or otherwise counter indicated as it was in my case then you would need to have banding done (EVL).

The hope is with cure of hep c everything will slow down and the likelihood of further progression is greatly reduced.

Philadelphia · « **Reply #21 on:** September 06, 2016, 05:34:17 pm »

I was on 2 X 25mg spironolactone daily for ascites/lower leg oedema and that was abt 1 to 2 years before I started treatment.

After finishing treatment and having my albumin levels return to normal, I reduced the spiractin to 1 tab daily at my Drs suggestion. Everything was holding well. No sign of ascites on ultrasound. My dr was keen for me to try living without it. I clung to it as a bit of a security/safety net thing. Don't ask me why, I have no idea.

I have since dropped the spiractin in the main. In discussion with my dr, I do have a jar of them in the cupboard and every now and then when I notice a little puffiness around my ankles I might take one a day for a couple of days. I notice this most when the weather is hot, if I'm sedentary (I judge Showjumping events and it involves hours of sitting), or I'm on my feet all day, I'm on a long haul international flight, or I'm super tired.

That might happen once every 6-8 weeks. To give you an idea, I got a bottle of 100 tabs in Feb and I haven't put a dent in it.

I don't have a special diet, and I do eat salt. Maybe if I didn't I'd get better results.

Lynn K · « **Reply #22 on:** September 06, 2016, 10:24:49 pm »

Yeah I would like to drop the spironolactone they asked me about it at my last appointment if I had thought about it.

I still have swollen feet and lower legs every day. Maybe once I leave my current totally sedentary job soon and lose some weight. But for right now taking my once a day 50 mg spironolactone.

AllShookUp · « **Reply #23 on:** September 07, 2016, 11:28:11 pm »

I said no to the Nadolol and I am feeling much better.

Why take a drug when there is no evidence that it will prevent worsening of condition, costs me $70 a month and made my quality of life lousy due to side effects which made me feel weak and sometimes dizzy. Also, I like the idea of an endoscopy after two years. I want to know if things are getting better or worse.

All of my doctors tell me - low sodium. Easy to say but it is a real challenge to do.

I found an interesting study about platelet count/spleen diameter ratio and varices.

http://www.rima.org/web/medline_pdf/plateletcount.pdf

Lynn K · « **Reply #24 on:** September 08, 2016, 12:39:09 am »

I will say I did prefer fixing the varicies with banding vs a beta blocker to hope they don't rupture. And anyway couldn't take the beta blocker.

My doctors haven't said anything about sodium but maybe they assume I know as I am a kind of educated patient and they probably assume I know I should reduce sodium but as you said it is hard todo especially as I don't cook at all so that increases the difficulty but I do try to note sodium content on packaging and I never add salt to food

Forums Index

Welcome

Author Topic: Seasoned Treatment Veterans (Read 19695 times)