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Post Info TOPIC: 4 weeks into treatment


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RE: 4 weeks into treatment
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Sorry, forgot to mention two things

Yrs I was told about sodium intake and thought I don't like salt that will be easy. Until I looked at the contents of products on the supermarket shelves! Anyway, I am trying.

Also have not talked about 24 week treatment. I think the doctor has tried to prepare me for a reduced chance of undetected status after 12 weeks. But the government will not have approved them here for some weeks after I come off treatment, so I would have to pay another $1200 to Greg Jefferys if he still kind enough to be spending so much of his time helping others. I suppose $1200 is a small price to pay. Maybe I should mention that too on Thursday. I will have to make a list - my short term memory is scrambled.

biggrin



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.



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thanks for your input guys. I have removed that sentence from my thread. My viral load was taken on 01/08/16 so still dont know results.

I will post again after I have seen the specialist on Thursday to run by you her opinion on the ascites and fluid intake. She should have the abdominal ultra sound and another blood test to look at on Thursday too. 

With regard to the depression - I think I have suffered from it my whole life which of course leads to risk taking behaviour and lots of other problems. I only used intravenous drugs for about three months in 1969 on a weekend to weekend basis, but one needle was enough.  I am currently taking a pretty effective anti depressant - at least it had been until my cirrhosis diagnosis. I'm not sure whether it was a sign that my liver was no longer processing drugs in the normal way or whether I was forced to confront something i had been basically in denial about since my official diagnosis in 1994. I had a full time job, was a single mother and my youngest child was two. I couldnt die. I also was a teacher in a very conservative middle class school and I couldn't deal with the shame and the stigma, in my own head, let alone in public.

So even before I went on Ribavirun I wasn't in a jolly place. But it probably has got a bit Worse since I began treatment. I just don't want to go outside. It doesn't make sense when I am so frightened of dying but only half living the life I have been given.

sorry, that turned into a bit of a prolonged emotional spew. I have just watched Ricky Gervais' monologue at the Golden Globes which made me laugh a lot. And thinking too about David Bowie and how much he did for all of us with his brave creativity.

thanks for taking the time to help me.

Syd. 



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.



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Hi Syd,

Would you do me a favour? Remove the 'Inactive til 2013' from your signature line.

The virus has been chewing away at your liver since 1969, so it has been far from in-active.

Your blood is typical of cirrhosis. The low albumin and reversal of the AST/ALT ratio tell the story.

As a decompensated cirrhotic, I'd like to have 24 weeks of treatment. Is that possible?

You should see a Nephrologist to assess your kidneys. With your low albumin and ascites, fluid intake is a touchy subject. You should get some renal advice.

Good to see the ALT drop. When are you having a VL test? Cheers.



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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



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Hi again Syd.

 I was looking over your previous post and a memory came to mind from my experience. It is that you should limit your dietary sodium intake to no more than 2 grams per day, which can have a big effect on treating / managing your ascites fluid issue. I haven't thought about it until now but I want to be sure that you have discussed this with your doctor and are aware of it. As Tig56 explained you are responding well to treatment. But you have some concerns that your doctor is obviously monitoring closely if you have an appointment with her on Thursday. So please let us know how that visit goes.

 You've mentioned a couple of times already about feeling "alone" and being "depressed". These feelings are very familiar to me and many others who have taken Ribavirin. It was the most significant Sx for me last year during my 24wk Sov/Ribavirin Tx. Some of our members, including myself, were prescribed anti depressant medication to adjust to this better. I would suggest making sure you mention this to your doctor Thursday. It is a known common Sx of Ribavirin and if your doctor can help you with it then your Tx road will be a bit smoother. 

 And know that nobody is alone in this group. If you get lonely and just want someone to talk to then you are welcome to start a new thread in any appropriate section at any time, with whatever subject is on your mind. If you get depressed and need a smile on your face then Brownie and a few other of our 'clown' members biggrin can likely accomplish that in the Share A Daily Funny! thread.

Hang in there Syd. Success is in your future - You'll get there, one step at a time. smile

 



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57 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52,+115wks = SVR-115

Mike

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Thanks so much for your detailed response Tig. In November I developed ascites and was placed on diuretics. Dr has reduced them twice but I am going for an abdominal ultrasound on 01/12/16. Initially she also told me to reduce my fluid intake to 1.5l per day. I have read enough here to know I should keep hydrated and i was very thirsty. So now I am compromising by just drinking when I'm thirsty, knowing that it's going to be well over 1.5l. I have an appointment with her on Thursday and will find out then whether the ascites is under control and I can up the fluid intake. I certainly feel a lot better since diuretic dosage was lowered the day after those latest results came back. Just tired and depressed. Trying to suck up the positivity, bravery, kindness and  resolve I see so much of on these pages. 

Thanks again. Your explanation was great.



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.

Tig


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Hi Syd,

Sorry for the confusion regarding your post placement. We like to keep the threads on topic when started by a member seeking personal information. Like this thread, it's yours and will always reference your information unless you choose to include others in it. You (and us) will be able to refer to it for info if needed. It saves a lot of looking sometimes.

Your newest results are much improved! You still have several items that are high though and I'm sure your doctor will address them with you next visit. We'll try to provide knowledgeable opinions but we don't diagnose. When possible, we try to point out things so you can discuss them with your healthcare team. 

The liver function tests are so much better. The AST, ALT, and ALP are values we watch most often. As you can see your previous tests were very high and are now just slightly over high normal. Compared to what they were, your newest results are great! We see this happen to everyone once they start treatment. The liver releases these enzymes when it's in distress and they are generally the results that doctors first notice are elevated that prompts them to test for HCV. As the drug (Harvoni) begins it's attack on the virus, the first sign that it's working will be a reduction in those values. You should be very pleased to see them dropping rapidly! There are results that represent kidney and liver function, so tests like the Creatinine, Urea, GFR can represent things affecting both systems and since you've got other health concerns you are working on, your doctor will have a better understanding of why they are elevated.

When you have labwork done at different labs, be sure to pick up a reference sheet explaining their high and low ranges of normal. Different labs can and do vary, so be sure to get that information. If possible, try to have the labwork performed at the same lab for the sake of continuity.

When your liver and/or kidney function is impaired, they aren't as efficient at filtering out some of the impurities. Because of that, you will see higher than normal function tests like the creatinine and urea, because they aren't being removed like usual. As your health begins to improve and that can be through treatment, diet, etc., these levels begin to normalize. Yours are improving and I expect that with continued treatment and your physician's attention to specific details, you will see continued improvements. It all takes time, so when you hear us say you're "improving" is a good thing! Just be aware that these levels fluctuate when you're being treated for some abnormality, don't be alarmed if you see some initial up and down variance in their totals. You are taking some powerful medication and your body is at war with your virus. These tests simply give your doctor a picture of the battle going on. Things improve over time, never over night.

I hope I've been able to help you understand things a bit better. If you have a specific question, ask and I'll do my best to answer. I also want to tell you to be absolutely sure you are hydrating properly. You need to be drinking at least 3-4 liters of good quality water everyday! Your kidneys will appreciate it and it will reduce or eliminate some of the side effects from the Harvoni.



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Tig

63 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 6+ years!

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Hi, 

i was hoping someone could explain my blood results in a bit more detail than "they've improved."

these are from June and November 15 and Jan this year, four ekes into treatment.

 

i am hoping I have put the put the post in the right area now.

thank you Tig 56

 

[Post merged]

 



-- Edited by wmlj1960 on Sunday 10th of January 2016 10:15:28 PM



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.

Tig


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Hi Syd,

Here's a link to some information that is posted on the forum that may help explain that. If you need additional help, don't hesitate to ask.

http://hepcfriends.activeboard.com/t61027790/posting-attachments-and-url-links/?page=1#comment-61027790



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Tig

63 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 6+ years!

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thank you guys, and especially Mike for sharing your ascites story with me. I have been terrified of that bit and it means so much to know that yours is no longer a problem. Specialist originally told me to restrict my fluid intake and I keep forgetting to ask her if that still applies. I see her next thursday and in the meantime I would really like someone to look at my test results.

could you explain to me how I should upload them in the format you use?

Thank you so much fellow journeyers.

 



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.



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Hi Sydhanrahan.
 Your ALT dropping from 220 to 41 is excellent and a sure sign the medicine is doing it's job. Geno 2 is easy to cure and your acites will resolve as time goes by. Have you had a paracentesis done yet to pump the ascites fluid out of your abdomen? I went from having multiple paracentesis procedures for ascites in 2 months time to not having any problem with it now. I don't even have to take diuretics any more. Keep doing what your doing and your condition will also continue to improve. The ribavirin does cause side effects but staying compliant with your medicine schedule will be well worth it in the end. Staying adequately hydrated, eating healthy and getting adequate rest will help with the side effects. If you can post your lab results we will be glad to explain them in understandable terms. If you need help on how to post the results to the forum just ask and we will help you with that. You are on the road to recovery but it will take some time and perseverance so hang in there and keep SVR as top priority. Keep us up to date on your progress. smile



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57 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52,+115wks = SVR-115

Mike

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Hi Sydhanrahan,

I am on Canada's west coast so still reasonably awake. Definitely conscious enough to sincerely wish you well and thank you for your post. Yes the moderators give and give and give. Hats off to them!

Congratulations on starting your treatment. I'm going to go out on a very short limb and suggest that some kind soul will ask you to put up your history and test results. They will give you the tidy way to do it as well....I'm just the piano player lol. Actually I don't play piano but my wife does.

Well all I have for you at the moment is a nice smile and a big HUG.

Welcome!

Greg



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60 yo (2013), genotype 2b, started 28 week tx Sept.14, 2013. Triple Therapy (ribavirin, victrelis, peginterferon), VL 235k prior to tx, UND right through. EOT March 29, 2014. EOT24 Sept. 15, 2014 and EOT + ONE YEAR April 1, 2015 UND.... SVR!

 



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Firstly this site has become such a crutch for me. Thank you to everyone who contributes. There is always something here that makes me feel less alone. Moderators must give up so much of their free time to help people going through this journey.

i have just received blood tests for Four week marker. ALt has gone from 220 in November to 41 yesterday - jan 7. I don't know what the readings mean but I know it's very exciting news. My liver had begun to pack it in very quickly this year; I have cirrhosis and have ascites, doctors still adjusting diuretic dose and my kidneys aren't very happy. 

I got my sofosbuvir and Ribaviron from Greg Jefferys in Tasmania. He is another hero who spends many hours each day helping others. The drugs may be freely available in March but I couldn't wait that long. In the two years since Sofosbuvir has been on the market I have become severely ill and when I saw this chance I took it as waiting and hoping certainly didn't work out. 

I too have had symptoms such as pounding heart, shakey hands, insomnia and weakness. The doctor thinks some of these may be attributable to too high a dose of diuretics but i have read on this forum that they are pretty common for Ribaviron patients. 

Anything now is worth is to get rid of this filthy virus which has flourished in my body for 45 years.

Thank you to all those who are helping me forward on this journey. 



__________________

Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.

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