I am sure you have already started treatment. The side effects are different for everyone. As treatment progressed the side effects got worse. Stopped treatment at 4 months. Was fast responder. Off meds 3 weeks and still have side effects. Pain in chest, legs, tired, cannot sleep, brain fog.
My understanding of splitting the riba dose is mostly about tolerability. You'll be pretty saturated with the stuff in a couple weeks anyway and it's not like the protese inhibitors where timing is critical.
My understanding of the IL28B is different than your doctors. With geno 1 the PIs have 'leveled the playing field' for all IL28B types. The article I linked:
http://www.gastrojournal.org/article/S0016-5085(10)00841-3/abstract
seems to show it useful as a 'futility rule' for 2s and 3s who are not undetectable at week 4.
"Differences between IL-28B genotypes were greatest among patients who failed to attain RVR .............CC, 87%; CT, 67%; and TT, 29%; ..... Among patients with RVRs ...the IL-28B genotype was not associated with SVR (>70% for all IL-28B genotypes)."
The article is a couple years old so your doctor may have more current info. Hopefully you're UND at week 4 and it's not relevant.
The riba is probably fine for your weight. I started on 1200mg (600 twice a day) but at that time I weighed 220+ lb / 100+kg.
katy - thanks for you thoughts. I wish there were a group here in Hong kong
Pete
The doc told me that TT had very little significance for geno 2 - In fact he said only worth doing IL28B if you're geno type 1 This guy is a professor. Why would he say this if it's plan wrong?
Also I notice he has instructed me to take 800mm Riba (4 pills) ONE TIME per day. For my weight I'm reading 1200mm. Split TWO TIMES per day.
I called today to ask to take more and he said "no". Any ideas why this might be?
I just had first shot and I have fine totally fine: 24 hours later. I'm feeling confident and sure I can do this. Steel yourself and get on with it!
good luck
Pete
Help me please hep c gyno type 2 getting ready to start treatment on pegasys and riba can someone please tell me what to expect from the first shot I'm very scared
Good luck and be sure to post your 4 week viral load test.
Worst case scenario, you still have almost a 30% chance of clearing. If the side effects aren't treating you too badly, you can still do 24 weeks with those odds.
If you're undetectable at 4 weeks you're chances are as good as it gets >70%.
You can ignore those 'best answer' emails. That's what I do.
There is rarely one best answer.
To let you know I started treatment today.
Peg-interferon and riba 800mm. I asked for bigger dose of Riba but Dr said I was average weight and normal does will do. Unfortunately IL28B test showed me as TT but Dr said this has less significance on Type 2.
I keep getting asked by this site to log best advice but I am grateful to ALL! To choose one over another seems to me to devalue folks' good will.
I thank everyone who has kindly responded and will check in.
best wishes and be lucky, for you and me!
Pete
once again thanks for the valuable info. I will let you know how it goes.
Pete
thanks for this. I will discuss with Dr Poon - I call him Ferrari Poon - because everytime he see sees me he can afford another Ferrari! Medicine in HK is very expensive.
best wishes
Pete
"hope your doctor will prescribe the ribavirin dosage according to your weight instead of a standard 800 mg."
This is a good point. I had stats very similar to yours except for being geno 3 rather than 2.
Infected for aprox. 30 years. Worked hard, felt good. Lower fibrosis score, but I found later that I had steatosis (fatty liver) something geno 3s are prone to.
My doctor started me on weight dosed 1200mg. , though later in tx (week 19) I dropped to 800. My understanding is that riba does its 'heavy lifting' during the early part of tx, so this is a good point to confirm with your doctor.
Good luck.
Good Luck with treatment Pete. I think you made the right decision to treat now and hope your doctor will prescribe the ribavirin dosage according to your weight instead of a standard 800 mg.
Pooh
I don't think I thanked you for your very thorough reply. It was very helpful. I have since had the IL28B test and I am awaiting the results.
best wishes
Pete
Did you have symptoms before you embarked on treatment - that is to say were you feeling ill? I'm not, in fact people keep telling me how well I look!
The only way I can liken this is sort of hairline fractures on an airplane that superficially looks fine. I can't imagine myself saying I feel much better after 24 weeks of treatment coz I feel fine anyway. I suppose if I hit myself on the head with a hammer it will feel nice when I stop.
Anyway will start treatment next friday.
best wishes to you. I glad you are well and I hope this works for me too.
Pete
I am 60 years old and finished 24 weeks of peg and riba in march.....6 months end of treatment CURED. I am g 2. It wasnt easy but worth every bit............
Thanks so much for this explanation. I'm off this morning for my IL28B.
Pete
Glad you found a lab.
The gene combo which seems to be the best to carry on this particular test is CC. CT is next most receptive and TT the least. There are other spots on the IL28B gene that seem to have some bearing on response, but this is the only test commercially available at the time.
But the most important thing in response guided therapy is getting those early viral load tests, especially the one at 4 weeks. Even someone with the TT gene combo has a better than 70% chance of a sustained response if they show undetected at 4 weeks - RVR (rapid virological response).
You are very kind to say that I "seem to be very well informed". I'm just a little obsessive on this particular topic ;-).
For years, one of HCV patients primary complaints was that doctors were giving us 'one-size-fits-all', 'cookie cutter' style treatments. Now that we are starting to get the tools to do response guided tx, I think we should use them.
Best,
d
Your comments are very much appreciated. I have found a lab to get the IL28B done and I'm going tomorrow to get the test. I need to wait three days for the results to come through. I guess I will start the treatment the following Friday.
Thanks again
Pete
I'm genotype 2. Right now interferon treatment is all that is available to you.
The new orals in trial could be available to the public anytime from as early as 2014 in the U.S. It could be longer and who knows how long, until it is available elsewhere.
Because you are genotype 2, I'd suggest you begin tx sooner rather than waiting.
I saw a good GI in Bangkok at British Nursing Hospital.
Bumrungrad is fancier but I liked my GI at BNH better.
Bumrungrad is more likely to have you do more than is necessary to simply get more money out of you.
Dear Idyllic
Where did you find info about the trials in progress for Geno 2 & 3 for the all oral HCV meds? I'm wondering when we can expect these drugs to come onto the market.
best wishes
Pete
Dear desrt
I hope you do not mind me writing but you seem to be very well informed on HEPC and treatments
I am searching for a Dr to give me the IL28B test. In Hong Kong this does not appear to be easy. I have emailed a hospital in Bangkok and will fly there if I cannot find here.
Am I right in saying that the test is looking whether you a re CC CT or TT? (whatever that means.) If so which category is the one that will be most receptive to Interferon and ribavirin treatment?
The Dr tells me I've probably been carrying this for 30 odd years. I am totally asymptomatic. I work a 12 hour day all week and feel fine on it. In fact people tell me how well I look. This HepC has fallen out like a joker in the pack. I have seen the reports and read them so I KNOW they are true. But it is almost in the realms of fantasy that I'm going to risk all the side-effects to these drugs when I feel so well. This must be common - right?
How long have you been dealing with this disease?
best wishes
Pete
_____
There are many, many people on the forum who are over 60 years old. The oldest couple I saw were 70 and 71 respectively. I am 66 years old. I have had Hep C for 30-37 years depending on how I got it. I am Genotype 1, Grade 2 Stage 2 fibrosis. I just finished 48 weeks of triple medication treatment with Interferon 180 weekly, Riba 600 mg twice daily, and Incivek 750 mg 3 times a day. It was no picnic, but it was very doable. The Incivek was the worst. Once I finished the Incivek I felt a lot better. I had to do the longer treatment because I was still detectable at 4 weeks, but I have been undetectable since 8 weeks (weeks 8, 12, 16, 20, 24, 28, 32, 36, and 48 were all undetectable). I did okay on treatment even though I am 66. I feel much better than I did before treatment. Hep C was causing a multitude of problems for me and now, after treatment, most of them are gone.
If you are already at Stage 3 fibrosis, your clock is ticking. It is much easier and more successful to do treatment before you reach Stage 4 (cirrhosis). Plus, you want to do treatment before you get cirrhosis and before you develop any other diseases that may prohibit you from treating. You may not have time to wait for new drugs and you sure would not want to be in the placebo arm of a trial/study.
Treatment does have side effects, but most of them are doable and will not cause a person to quit treatment. Some (like nausea or rash) can be controlled with other medications. Many people have very few side effects. Others have more. Some have mild side effects, some have more troublesome side effects. Many people continue to work through treatment, some cannot, especially on triple med treatment (which you are not on). Cirrhotics, are at risk for more health problems when doing treatment and they can risk liver failure or other problems. The drugs do not work as well on cirrhotics so the treatment success rate is lower. That is why it is best to treat before cirrhosis sets in.
In addition, the Hep C virus is not just taking a nap in the body. It is very busy doing all sorts of damage, not only to the liver, but to many other organs as well.
I have been extensively educating myself about Hep C. The studies, articles and presentations I have seen, all conclude that the benefit of treatment outweighs the cost. Treatment is cost effective. Treatment is a whole lot cheaper than a liver transplant.
It is true that a few people can have long term side effects from treatment so people need to be aware of that. However, they can also have major health problems if they do not treat, including End Stage Liver Disease (something you really do not want to get). I will include some links at the bottom.
I have not read anything about interferon treatment "too often" accelerating liver damage. In people with cirrhosis who are doing treatment, there is a higher risk of health problems developing than if a person is not cirrhotic. But that is because the liver is already compromised and affecting other parts of the body and other functions of the body.
One of the most resent presentations I watched stated that it is becoming more clear that the percentage of Hep C infected people who go on to develop cirrhosis is much, much higher than previously thought. So is the percent of Hep C infected people who have cirrhosis/liver related deaths.
Of course, more people die from other causes, or so the death certificates state. However, how many of those deaths are Hep C related but just not attributed to Hep C. It has been found that people who have Hep C are much more likely to develop major chronic health problems which are "seemingly" unrelated to Hep C (and those problems are more severe), than do people who are not Hep C positive. These include diabetes, lung disease, cardiovascular diseases, kidney disease, and many more. So if the cause of death is a renal failure and the cause of the renal failure was Hep C, that death is Hep C related even if the cause of death states renal failure.
Of course a person needs to be well informed about the disease, its treatment, and the treatment side effects. But a person also needs to be well informed of the consequences of not treating while they still have the chance to treat.
I hope some of the people with cirrhosis will chime in here. Many of the people on the forum have cirrhosis so they know first hand the consequences of not treating in a timely manner.
Link to articles on extrahepatic manifestations of Hep C:
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf
http://www.hcvadvocate.org/hcsp/articles/Bonkovsky-2.html
A 2005 article:
http://www.ccjm.org/content/72/11/1005.full.pdf
Hi Pete: I go to a support group for Hep C, and most of us are in our 50's and 60's. I know of a few people who have cleared the virus, at your age, from my group.
The side effects for genotype 2 treatment can usually be tolerated quite well,
depending on the person, etc, of course. If you are feeling up to it, I would say Go For It on Friday, and start your cure.
Wishing you much hope and luck~ Katy