treatment side effects

[beeba5864]

I have had hep c since 1987 from working in lab.  My previous GI Dr never wanted to do treatment because of side effects and the fact that with my genotype it only works 50% of the time.  He also did biopsy every 2 years and said the damage was not that bad.  He wanted to wait for better treatments that won't make you sick.  I believed him.  He retired and my new GI doc was upset about this.  He says I am in stage 3.  I am now having pinching pain in upper rt quadrant, I get full after eating just a little and I have fatigue,low grade fevers and nausea.  New doc is doing emg in a couple of weeks.  He did ultrasound and my liver is enlarged.  He wants to start treatment very soon, so here's my question:  how bad are side effects of treatment?
I

[Carlhcv]

You can't sugar coat this. All three drugs come with their own nasty side effects. Side effects vary from person to person but you will have some. You really don't have any choice but to treat though do you? I am on week 14 of Riba, Interferon, Victrelis. I think and hope that I can do the 48 weeks.

[copyman]

Very good advice from the other members.

I think you posted you changed doctors so maybe new doc is more up to date with treatment protocols.

What I would question is a biopsy every 2 years. That seems very excessive. Usually every 5 yrs is the norm. The reason is there is some risk with the procedure.

Best of luck

[streamline569]

Ooops I meant 24 weeks...not months....

[streamline569]

Please get the ILB28 test to see if you are a CC. I had geno 1a was a CC with early cirrhosis and cleared on triple therapy with incivek in 24 months. Have you asked you doctor about the wonderful trials that are going on? Maybe you can get into one with the newer drug and less side effects and high cure rate. Good luck to you....

[dontworry_behappy1]

Hepatitis.va.gov - is a great site to get a better understanding of current treatment offered and what to expect from treatment.  The United States
Veteran's Affairs is the largest single provider of Hepatitis C treatment.  Their
site is geared to teaching you about Hepatitis C.  I wish I had found the site
before treatment and read all their Hepatitis C lessons.  Hepatitis C and treatment can be very confusing in the beginning.  Reading sites like Hepatitis C.va.gov will help you get answers and obtain the skills to know
what to ask for.  
Best to You

[ceanothus]

So you are 1a, that's the same that I had (after all those years of infection I'm still having to work at using the past-tense). Up until May 2011 both 1a and 1b had pretty dismal cure rates, and my experiences certainly illustrated that. With the triple tx the cure rates jumped up a lot. They still vary depending on a number of factors but I think it's somewhere around 85%. I agree with Pooh that at stage 3 fibrosis, you really ought to get on treatment pretty soon rather than waiting for the next generation of drugs. Then the next generation will be there as a backup just in case you are unlucky with the current triple tx.

It's time for you to start studying and getting yourself really well educated on the virus, the tests done, the treatments and the side effects, as well as how they are best managed. I think people who work on educating themselves are much more likely to handle treatment well. Many doctors aren't as up on all that as they should be. You can learn a lot from browsing around on this site, and from following links people post here, but another site that is really good is hcvadvocate.org, they have the info in a very organized layout so its easier to find. What you can't find there you can ask for here! You can also get a lot of plain old emotional support here in addition to great info. Best wishes!

[pooh55811]

Ceanothus gave you a lot of good information in her post.

You said you are 1a and that your fibrosis is at Stage 3. The next stage is cirrhosis so you don't have a lot of wiggle room here. If it was me, I would treat ASAP. You do not want to progress to cirrhosis while waiting for new treatments.

Currently the approved/recommended treatment for Genotype 1 is triple medication therapy with Interferon (injection), Ribavirin, and a Protease Inhibitor (either Incivek or Victrelis). The treatment is for 24 weeks depending on various factors, including if one has cirrhosis and/or if one clears the virus by 4 weeks. In one has cirrhosis or does not clear the virus after 4 weeks of treatment then one needs to treat for 48 weeks.

There are new drugs in the pipeline but they are not on the market yet. In addition, the new treatment will still contain the (injectable) Interferon. There won't be all oral regimens out until at least next year.

It sounds like your doctor realizes you need to treat soon, very soon. Like I said before, if I was at Stage 3 I would not be waiting around. I would treat ASAP. It is more difficult to obtain a cure if one's fibrosis is advanced and treatment can also be more difficult if one has advanced liver fibrosis.

Just for the record, I was at Stage 2 when I treated. I started treatment in Sept. 2011 and completed treatment in August 2012. I attained SVR (cure) in February. I feel wonderful, better than I have felt in 20 years.

Best of luck.

[beeba5864]

I am type 1a and my last hcvrna pcr qnt in 2009  was 3,1000,000 and I just had a new one done but have not gotten results yet. I will do some research also. Thanks again

[beeba5864]

Thank you for all your info.  Not sure of genotype will have to look through records.  Just didnt pay too much attention to my hep c cuz dr made it seem ok.  I will be more proactive from now on.  New doc did mention interferon and that if i am lucky by the time i start they may have in pill form.  This new doc seems more aggressive.  I will keep posted.

[Idyllic]

Ceanothus' account really sums up the evolution of Hepatitis C quite nicely.

As others say it helps to know your genotype since the kind of meds you take depends on that. A lot has changed in the past few years in terms of research and efficacious medicines to treat the virus so your odds might be better than 50%.

[ceanothus]

What genotype are you? The treatments vary depending on the genotype, and the side effects vary with the type of drugs. They also vary a lot just from one individual to another, so even if we have your genotype we will still be guessing if we try to tell you how bad the side effects will be. A few people breeze through tx (treatment) with hardly any problems, the majority seem to have a couple of mild to moderate level sx (side effects), a smaller percentage have severe side effects that may prevent them from working and may require additional "rescue" meds to manage, and a very few may have such severe sx that they have to be taken off tx early. I'm so sorry to hear your condition was so badly managed by your previous doctor, but this is unfortunately way more common than it should be. We hear a lot of stories similar to this. There is a real dilemma that has to be dealt with and many doctor don't handle it quite right. The dilemma is that current (and earlier) treatments can cause pretty nasty side effects. Previous treatments (prior to May 2011) also had remarkably low success rates for those with genotype 1a or 1b. I'm an example - I went through 3 months of unsuccessful tx with interferon back in 1994 and I was very sick the whole time but it didn't even affect the virus. In 2004 it was discovered that my fibrosis had advanced to stage 4, and I immediately started my second tx. That time it was interferon and ribavirin for 15 months. The virus became UND (undetectable in the blood) but was still hiding and came back immediately after stopping the meds. When the latest triple tx (interferon, ribavirin and a protease inhibitor) came out in May 2011 I immediately phoned my doctor. I started that tx in October 2011 and finished in Sept 2012. This time it worked and I'm considered free of the virus because it went UND at week 8 of the tx, was UND all the way through, and stayed UND for 24 weeks after finishing. That is called SVR, or sustained viral response. Treatment tends to be harder overall on people who are older and on people with more advanced fibrosis. Each of my treatments was harder on me that the previous one. I'm 59 and have had cirrhosis for 9 years, and tx was very hard. The first 3 months of tx included the protease inhibitor, in my case Incivek. That drug requires a particularly grueling schedule and eating massive amount of fat 3 times a day with the pills to ensure their absorption, and for me it caused intense nausea that required additional meds just to keep from throwing up the Incivek. It also commonly causes a rash that can on rare occasions become life-threatening, and it commonly causes moderately severe blood count abnormalities. Once that part was finished the sx usually become much less severe but still include severe fatigue (both a direct reaction to the interferon and also due to the anemia usually caused by the meds, some rashes, loss if appetite and weight loss, partial (and temporary) loss of hair, and many other less common sx.

On the other hand, untreated hep c, if it progresses to cirrhosis causes a greatly increased risk of liver cancer (HCC) and liver failure (ESLD). The effects of either one of those are far worse than any sx you might get from treating, and the only possible cure for either of them is a liver transplant - which isn't all that great if an option. There aren't enough donor livers so many people die while waiting for one, and even if you do get one life is much more complicated post-tx, with rejection issues being forever present. If the virus is still present when you get the transplant then the new liver is rapidly infected too and still requires tx after transplant. Anyway, as hard as tx can be, it is immensely preferable to letting the virus continue to have its way with your liver. Sorry I went on so long! I guess you can tell this is something I'm passionate about. Welcome to the forum!

[dontworry_behappy1]

What Genotype are you?

[dontworry_behappy1]

Type of treatment depends on your genotype.  There are lots of people on this forum who have been treated for Hepatitis C.  The side effects are different due to type of treatment, how much you have educated yourself about treatment and how well your body handles the treatment.