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Avatar universal

starting treatment.

I'm staring treatment Tuesday. I'm not sure what medicine Im sure it will be interferion and something else. My question is does the side effects of the meds stat as soon as you start or does it take a little while
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4355200 tn?1354593144
Wow, what a thread!  granttg, we are at about the same place with our diagnoses.  I haven't begun treatment yet, only recently got my complete diagnosis: 1a, CT, S2, G3.  So, maybe we can hold each others hand through this.  I, too, am frightened about the side effects - fear of the unknown, as someone said above.  It's just something we are going to have to go through though in order to get well.  

I have learned quite a lot from most of the folks who have posted on this thread.  They have eased my worries, provided useful information, shared their experiences and encouraged me to stay positive.  Hang in there and let's stay in touch.

Dena
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Avatar universal
Yea your right. Thanks allthis will be useful
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Avatar universal
granttg sorry your post went off course but remember your thread will always be here and if the good folks here don't step in when a person trys the scare tactic then others reading this would tend to believe what a single person said, so it's not a matter of "who knows more". Best to you in your decision.
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Avatar universal
Thanks for the post everybody I posted something earlier but I guess it didn't go threw. I have read more than anyonr can imagine I would appreciate it if people would stay on the subject on my post I don't care about who knows more. I'm going to my Dr now and will update you all shortly thanks for everything people
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Avatar universal
Wow!  I just came from the doc and I read this whole string and I am flabbergasted!  Everyone makes their own decision on hcv tx based upon what knowledge they gain from their dr, from research, from personal knowledge, and from various forums.  Problem resolution and research were a large part of my employment and there is such a thing as "TMI".  It can be very confusing for a newbie.  I am 6 weeks into tx (a newbie)and "chose" tx because I watched my mother die of hcv liver related problems (she had no other health problems) and am watching two sisters go untreated.  Granted my mom died at 90 but for 30 years her quality of life was terrible and the end was awful.  My tx with interferon and riba is not a picnic but it will give me a better quality of life than I see with my mother and sisters. To granttg....gather as much information as you can but filter out the negative. Good luck to you, don't stay away, let us know how you are doing.
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Avatar universal
That's a good post.  

"Trying to frighten" is a pretty strong way to put it.

"Truly understand and weigh the risks, benefits and odds"  is more of what I aim for.  

:-)
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Avatar universal
You are right about "fingers in the ear" - didn't mean to include that - not helpful. Thought I had edited it out and saw ("oh no!") when it was posted.  My apologies.  
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1815939 tn?1377991799
While some try to frighten others into not treating their Hepatitis C, it is extremely important and advantageous to be aware of just how dangerous untreated Hepatitis C can be and just how common these extrahepatic manifestations and Hep C related disease processes are.

"Abstract:  Cirrhosis and hepatocellular carcinoma are the prototypic complications of chronic hepatitis C virus infection in the liver. However, hepatitis C virus also affects a variety of other organs that may lead to significant morbidity and mortality. Extrahepatic manifestations of hepatitis C infection include a multitude of disease processes affecting the small vessels, skin, kidneys, salivary gland, eyes, thyroid, and immunologic system. The majority of these conditions are thought to be immune mediated. The most documented of these entities is mixed cryoglobulinemia. Morphologically, immune complex depositions can be identified in small vessels and glomerular capillary walls, leading to leukoclastic vasculitis in the skin and membranoproliferative glomerulonephritis in the kidney. Other HCV-associated entities include porphyria cutanea tarda, lichen planus, necrolytic acral erythema, membranous glomerulonephritis, diabetic nephropathy, B-cell non-Hodgkin lymphomas, insulin resistance, sialadenitis, sicca syndrome, and autoimmune thyroiditis. This paper highlights the histomorphologic features of these processes, which are typically characterized by chronic inflammation, immune complex deposition, and immunoproliferative disease in the affected organ  ...........
Conclusion:  Chronic hepatitis C virus infection is associated with multiple extrahepatic manifestations (EHMs) affecting various organs in the body. While there is some evidence that the virus may play a direct role in HCV-related B-cell lymphomas via direct HCV antigen stimulation of B-cells, most EHMs are generally believed to be secondary to the host immune response to the virus.In some conditions, the histopathologic changes of EHM are related to circulating immune complexes such as type II cryoglobulinemia, and their subsequent deposition in the small vessels and glomerular capillary walls, leading to leukoclastic vasculitis in the skin and membranoproliferative glomerulonephritis in the kidney.Other HCV-associated entities like sialadenitis, sicca syndrome, lichen planus, and autoimmune thyroiditis, while not associated with cryoglobulinemia, appear to be secondary to autoimmune processes resulting in chronic inflammatory infiltrates.In porphyria cutanea tarda, the disease process is thought not to be related to host immune response to HCV, but rather to HCV-associated liver dysfunction.The role of the virus in insulin resistance in HCV-associated diabetes is unclear, but it is thought to be secondary to either viral induced inflammation or direct interference of the virus on muscle insulin signaling.In summary, chronic HCV infection may result in a multitude of disease processes affecting the small vessels, skin, kidneys, salivary glands, eyes, thyroid, and immunologic system. The sequelae of extrahepatic HCV infection are seen histomorphologically as chronic inflammation, immune complex deposition, and immunoproliferative disease in the affected organs."

http://www.hindawi.com/journals/cdi/2012/740138/

http://www.ccjm.org/content/72/11/1005.full.pdf

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf
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3147776 tn?1549545810
Let's remember to address the OP's question rather than get caught up in personal bickering and debate over treatment.  Some good information, from a variety of perspectives, has been posted for the OP's consideration, but the sniping doesn't benefit anyone.  Thank you.
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Avatar universal
From Doctor Foster,
I remind my patients that waiting for new drugs is not
entirely risk free, and if a decision to wait for better drugs is made, it is important to review the decision in a few months to see if the changing drug development landscape necessitates a review of the original decision.

http://www.clinicaloptions.com/Hepatitis/Treatment%20Updates/ClinicalThought/Thought01.aspx

As for fingers in the ear bit, with all your one sided posts you seem to resemble that......... BTW, wouldn't put much weight into GP's and family docs when it comes to treating Hep-C, its not like having the common cold.
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Avatar universal
You are certainly entitled to your opinions, but it seems that you are suggesting that, even if you don't have long term side effects, that you may have them anyway. To me, that seems ridiculous on its face. You talk about life expectancy, but say nothing about the quality of that life. I would rather be dead than living with the effects of esld. You say that you have talked to many doctors in your area, How many? Are they Hepatologists? How many can there be in the State of Kentucky? In 2 days I will have completed 4 years and 4 months of treatment that includes some form of interferon and have always returned to complete normalcy, we will see this time. Lastly, I suspect any report that costs money to read, seems like the Hippocratic oath has been commercialized. More concerned with the buck than disseminating life potentially life changing info. Good luck to you...Mark
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Avatar universal

"We are well aware of your opinions and I believe I have more experience than you with treatment. I have followed your posts and, in my opinion, many border on medical advice. Just be careful unless you have the correct letters after your name, best wishes...Mark"

That's wonderful! This debate serves to better inform those contemplating treatment, whether you or others agree or disagree with me.

Now, I respectfully suggest that those folks with "letters behind their names" would do well to inform themselves more about long-term outcomes from treatment with INF therapy.  Too many of them only skim journal articles written by folks in the employ of BigPharma, articles skewed to present data in the most favorable light, and addressing only the time periods of treatment and a short time thereafter.

"The pharmaceutical industry has made itself an easy target for criticism by journals and journal editors in large measure because, when new drugs are being introduced or evaluated, the pharmaceutical industry wants to have a say in how studies are designed, who conducts the research, how the data are analyzed, and how quickly a line of investigation moves from conceptualization to completion and publication.”

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2735425/

____________________________________________________________

Good luck to all!


_________________________________________________________
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Avatar universal
"P.S by the way, have you seen all the SVR reports lately? That should be very positive news for everyone."

I have seen a number of reports of SVR, and it is positive for this who get it, assuming they haven't traded one problem for another.  I have also seen a number of reports of lost souls / psyche / cognitive abilities, terrible skin reactions, rapid life-theratening progression of liver disease and other bad side effects, not to mention the routine arthralgia / myalgia complaints. I actually think they've been near a 50-50 or perhaps 60-40 split over the past few weeks.  

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"By far, the majority are happy to rid themselves of HCV and feel better than before trt.   Most don't have lasting side effects other than the side effect of ridding this ugly virus from their body forever.  It certainly beats the alternative."



1)  Side Effects - most people probably do have subclinical side effects that they either do not notice (ie - slight flattening of psyche and shaving a point or two off of mental acuity) or do not attribute to INF combo therapy (ie - arthritic symptoms commencing and developing 2 months to one year post-end of treatment).

2)    Beats the alternative --  Wait now, what is the alternative?  Certain death from liver cancer or liver failure?   That seems to be what you suggest.

In at least 19 out of 20 cases, the alternative is living your natural life span and dying from some cause other than Hep C.  Those 1 in 20 who might die from Hep C will in all likelihood do it in their 6th or 7th decade of life.  A young person contracting serious side effects from INF combo therapy will have problems commencing their 3rd or 4th decade of life.  A young 20-somewthing man just posted last week about his severe, life-threatening INF-induced liver problems.  

Look, I agree that odds are INF won't totally whack you out.

I would ask you to agree, however, that odds are that Hep C won't kill one, or ever cause any significant health problems in one's life, either, other than those one might create in their own mind from unwarranted fear.  

The odds also are about 19 in 20  that if you treated and obtained SVR, it mattered not one whit to benefitting your life expectancy.  Yo may equate it with "saving your life" but the hard numbers say that is not the fact.   What it did was alleviate fear, fear that is understandable to some extent but also that is encouraged by marketing and advertising.

http://www.cdc.gov/hepatitis/HCV/HCVfaq.htm

http://www.sprc.unsw.edu.au/media/File/Recovery_from_hepatitis_C_treatments.pdf


“I think the companies have done a superb job of marketing this disease,” said Dr. Ronald L. Koretz, emeritus professor of clinical medicine at the University of California, Los Angeles. Dr. Koretz said there was no good evidence that treatment made a difference since many patients cured by the drugs might never have developed serious problems anyway.

http://www.nytimes.com/2010/07/22/business/22hepatitis.html


And you must also agree that INF-combo therapy can also speed death and / or ruin life.  That's a fact acknowledged even by the drug manufacturers.
_____________________________________________________________
"PS - An ever increasing number of physicians are starting to question the wisdom and benefit of INF combo therapy."

If that is true then why are we not hearing about it???

Perhaps finger sin your ears?




I hear it from GPs and Family docs in my ocal area,  I read it in and from expert Dusheiko himself in a very recent article  on triple combo therapy, to wit:

"Patients should understand the inability to accurately predict disease progression, likelihood of response, the regimens, the side effects and the risks and benefits of treatment, and should be cognisant of treatments that are coming down the line or are given this information. Physicians could consider it rational to give treatment to those with progressive disease but to avoid unnecessary or potentially detri- mental treatment. The regimen is not free from the disadvantages of IFN. In giving advice, physicians should clarify the key determinants of response, the likelihood of response (in naïve and prior non-responders), the need for treatment, side effects and safety. Patients with mild disease do not necessarily require immedi- ate treatment, but treatment should not be denied to patients with early stages of disease as those with minimal necroin- flammatory changes and minimal fibrosis are candidates for treatment and have a higher likelihood of response.

Patients with compensated cirrhosis are candidates for treatment; IFNα is difficult to apply in decompensated cirrho- sis and may precipitate deterioration. Compensated cirrhosis without portal hypertension differs markedly from a later stage of cirrhosis characterised by evidence of portal hypertension and thrombocyto- penia or cirrhosis with hepatic decompen- sation.53 54 Physicians must be able to judge the stage of disease and to manage the poor tolerability of triple combination therapy and potential complications of prolonged IFN treatment in patients with advanced cirrhosis.

Psychiatric or other comorbidities may be worsened with IFN treatment so these conditions should be stabilised.55 For prior non-responders and patients with cirrhosis, it may be necessary to take into account the nature of the prior response, the IL28b subtype and HCV subtype if deferring treatment for those unlikely to respond is considered.
For experienced patients, the data to indicate improved SVR rates in patients with first-generation PIs should provide the motivation. However, response rates are suboptimal in prior null responders with cirrhosis and are <10% for previous null responders with cirrhosis and HCV genotype 1a infection. Ultimately, what drives a patient averse to IFN to be treated with telaprevir or boceprevir and PEG-IFN
and RBV? What motivates a patient already treated with IFN to want to do it again with a first-generation PI regimen? What role does the physician have in influ- encing these choices? There are no easy answers. The uniqueness of the HCV treatment decision process has recently been discussed. Deferring HCV therapy pushes the doctor–patient relationship past easily defined boundaries and creates the need for an informed deferral process.56 We have reached an era of perso- nalised medicine in hepatitis C."

Geoffrey Dusheiko, Heiner Wedemeyer
From 1650
Gut December 2012 Vol 61 No 12


This article should be purchased by anyone contemplating triple-combo therapy.   It costs $35.00.
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766573 tn?1365166466
Greetings - I read your other post & not sure how it went overlooked but Advocate above has the right of it. It is extremely unlikely you will start treatment tomorrow.

You mentioned you find out your Genotype tomorrow so you will have a better idea of the meds you will treat with (when & if you treat). If it turns out you are Genotype 1 then you may very well follow triple therapy as your doctor mention. If not, the other treatment option (as far as meds go) would be just the Interferon and Ribavarin.

There are lots of threads on here about questions to ask on this visit but mostly if it were me I would ask about all my treatment options. Or if you are certain you are going to treat no matter what your genotype I would be you agree with how your doctor treats side effects.

Do you happen to know the stage of fibrosis you are? Do you happen to know if one of the labs you had back in November was your IL-28B genotype.
___________________

Be sure you post your Genotype so we know which side effects to address. Some sides can kick in right away while others may happen gradually.
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1669790 tn?1333662595
oops, hi pooh, crossed your post, typing slow tonight :-)
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1669790 tn?1333662595
I agree with Advocate that the next appt will likely be a follow-up to discuss trt options.  Take a list of questions with you since there is a lot of information to digest in a short time.  It helps to have someone go with you to help remember everything.  Be sure to get a contact that you can call with additional questions.  We were are nervous beginning trt - this is very normal, the fear of the unknown.  

Since many respond to trt differently, its difficult to generalize on how you handle side effects.  Some breeze through while others struggle.  I began to feel the side effects around 3-4 weeks.  For the most part the side effects were very manageable, with some difficult periods of some rash during my 48 week trt.  I've since SVR'd and if asked would I do again knowing what trt was like, the answer would be an emphatic - YES!.  Hopefully, you'll only have 24 wks if you're doing triple trt.

Some people such as rambleon have had a rough time with trt and the post trt side effects.  By far, the majority are happy to rid themselves of HCV and feel better than before trt.   Most don't have lasting side effects other than the side effect of ridding this ugly virus from their body forever.  It certainly beats the alternative.  Some are patiently waiting for an interferon free trt since their biopsy has indicated a low level of fibrosis.

There are many complicated issues to discuss with your doctor to go into this trt with eyes wide open.  Try to become as well informed as possible which will ease your worries and help you through trt.  There are many very knowledgeable and helpful people on the forum willing to help give you guidance.  Good luck moving forward.
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1815939 tn?1377991799
"PS - An ever increasing number of physicians are starting to question the wisdom and benefit of INF combo therapy."
-------------------------
Just wondering, where did you hear or read that? I have never heard or read that premise in any of the articles, presentations, literature, studies, data that I have read/seen.


As a side note, SVRs are being posted right and left. Some people are definitely benefiting from treatment.
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1815939 tn?1377991799
I agree with Advocare. You will probably not start treatment this Tuesday. You will probably be discussing more about the treatment, doing some tests, having a liver biopsy. You mentioned 3 drugs so you must be Genotype 1. If your doctor does not mention a liver biopsy, it would be wise to ask him/her about a liver biopsy so that you know at what stage of fibrosis you liver is. If you have a lower fibrosis stage treatment is not nearly as urgent as it would be if you have a higher fibrosis stage. If you have a liver fibrosis stage of 3 or higher, it becomes more urgent to treat sooner rather than later.

Your general health may be a factor too so, if you have other medical problems, be sure to discuss these with your treating doctor.

I would encourage you to try to read as much as possible about Hepatitis C and the treatment so that you know what questions to ask, what the treatment will be, what the side effects can be, and so forth. Also ask as many questions on this forum as you feel the need to ask.

Treatment is no picnic, but it is doable. This forum is a great place to get tips and feedback and help with the side effects.  As far as the side effects are concerned, they vary from person to person. Some get several side effects others do not get many at all. Some have more troublesome side effects and others have few side effects. For me they started the first day, but they vary from day to day, both in type and in intensity. One key is to be sure to get your side effects, if you have them, under control immediately. Treatment is much easier if you have a treating team that is able to recognize, access/evaluate, and treat the side effects immediately.

Many of us have treated, are in treatment, or are waiting to treat. Many who have treated are now attaining SVR (cure).

I am 67 (65 when I started treatment). I am Genotype 1. I started with a viral load of 14.4 million. I was at Grade 2, Stage 2 liver fibrosis. I treated with Interferon, Ribavirin, and Incivek for 48 weeks. I finished treatment in August. My 12 week (12 weeks after end of treatment) viral load test was undetectable and this means I have 99.7 % chance for cure, very good odds. Almost all side effects are gone now and I feel 1000 % better than I have felt for 19 years. I feel like I have a new lease on life and I feel great.

So please hang around and ask questions and get the support you needs. We are here to help.
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Avatar universal
"PS - An ever increasing number of physicians are starting to question the wisdom and benefit of INF combo therapy."

If that is true then why are we not hearing about it???
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Avatar universal
We are well aware of your opinions and I believe I have more experience than you with treatment. I have followed your posts and, in my opinion, many border on medical advice. Just be careful unless you have the correct letters after your name, best wishes...Mark P.S by the way, have you seen all the SVR reports lately? That should be very positive news for everyone.
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Avatar universal
hell,i dont know what i'll do period,i am on the fence stradling it.i dont go to dr til feb 5th....
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Avatar universal
If you say so.  

From where I sit, it's common sense coupled with too much experience.
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Avatar universal
Boy, that sure sounds like medical advice, I would tread carefully if I were you. That is just my opinion, of course...Mark
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Avatar universal
PS - An ever increasing number of physicians are starting to question the wisdom and benefit of INF combo therapy.
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