Ok I got my geno number today and update on new meds
I was so glad the pharmacy called me today because my Dr. is not back in till tomorrow but They told me I have Hep C geno 1a I was also diagnosed with a between stage 3 and 4 chronic liver, Dr is putting me on Interferon, Ribavirin and rats I forgot the paper at work in my locker that I wrote the info down but anyway I am calling my Dr tomorrow to find out if he wants to wait because they told me that the drug replacing the interferon is suppose to be released in three weeks and supposed to have better results. And my copay is going to be about 140 a month on all three, So can someone tell me what the geno 1a means for me because the lady I spoke with said looks like 1 year treatments but some get by on 6 months..
Thank you all so much
Donnie so glad you caught the delivery, when the new meds are approved even though it is still interferon the new protocol will be a reduced treatment time, it can make a huge difference for you .Yes triple treatment can be upwards of 48 wks for stage 4 damage, I think youll be making a smart choice opting for the new release.
I really need a memory drug, Ok the nurse from the med place just called me and the drugs I will be on is interferon, Ribavirin and Incivek the new drug coming out replaces the Incivek and she said the new drug is more expensive but I will not have to take the 3 drugs as long so again I will talk to my dr tomorrow and see... But she said to take my time there was no hurry but my dr may have a reason he does not want to wait..
I can't stress this enough, you need to be seen and advised by a Hepatologist. There is different drugs about to be approved. One is Simeprevir and the other is Sofosbuvir. Both are used with the Interferon for genotype 1. Sofosbuvir seems to have better SVR rates. Both seem to need only 12 weeks of treatment, only a Hepatologist can advise you which one and treatment time since you seem to be boarderline cirrhotic.
You need not to panic, time is on your side, a few months is not going to be a problem.
I would like to add when both Incivek and Victrelis first came out there were rebates to lower the cost by both of these drug companies. Many were able to get them for almost free. I am sure with these new drugs there will be something to help lower the cost.
Thanks can-do-man, When she was telling me about the new drug she did not say what that new drug was that replaces the incivek other that I would not have to take it as long and it also cut down on the other two drugs as well, My copay is only $150 a month for all three and she said the incivek was $25,000 for 12 weeks, That's unreal a drug could be that much.. I will definitely tell him about the drugs you mentioned and get his reaction...
Again thank you all...
I agree with Can-do-man that you should be seeing a Hepatologist, a liver specialist, not just a plain Gastroenterologist. Most Hepatologists are Gastroenterologists, but Hepatologists specialize in the liver, whereas regular Gastroenterologists see people with all sorts of gastric problems. Being that you are Stage 3-4, you really need to see a Hepatologist, preferably a Hepatologist at a large university affiliated medical center. In addition, you have PCT. This can cause further problems while treating. In addition, as Jules said in another thread, since you have PCT, you should he checked for Hemochromatosis. PCT and Hemochromatosis often go hand in hand and they can complicate Hepatitis C treatment. You really need to be seen by and under the care of a competent and experienced Hepatologist. Even if you have to wait a month or more for an appointment with a Hepatologist, it will be to your advantage for you to see the Hepatologist. You only want to treat once, if at all possible, so you want to be sure you have the most qualified doctor you can find for your situation (Stage 3-4, PCT).
I do remember my Dr telling me that when he sees me in a month after starting treatment that if I show no signs of getting better he was going to get me to a place to get me ready for a liver so wunder if he meant getting me to a place you guy's are talking about, at least I have more ammo to throw at him when I call him tomorrow... I am printing your comments now to have with me so really thanks a bunch...
What is your IL28B geno? If you are CT or TT and going to be given interferon, you need to understand your interferon resistance. A hepatologist would test for IL28B, a GI maybe not. Call the doctor office and ask what is your IL28B geno. If they didn't test for that, don't walk but run to a Hepatologist.
purplecat: Not all hepatologists test for the IL28B alelle. It is useful information for people who are in clinical trials. It is not always as useful for people who re doing approved treatments because there are not that many choices of treatments. Also, the two new treatments soon to be available will require interferon for genotype 1s. If you were a genotype 1 with a CT or TT allele and stage 3-4, would you opt not to try them because of your allele and the need for Interferon? I would try them regardless of my allele, so since there are no other options that do not require Interferon, and Donnie isn't in a clinical trial, I'm not sure I see the need for allele testing. However, I absolutely do agree that Donnie should see a hepatologist.
Donnie54: I really strongly recommend that you see a hepatologist. It concerns me that your gastro would prescribe triple tx with Incivek, given that the length of treatment would be 48 weeks (if it works), and the side effects are so difficult, WHEN there are two new choices of treatments that are very very likely to be approved within a month and available within two. These two new choices of treatment, as can-do-man said are sofosbuvir and simeprevir. Both are shorter treatments and both have fewer side effects, according to trial studies. And both are perfect for you because you are a genotype 1, treatment naive (never treated before). As can-do said, waiting 1-2 months to see a hepatologist and to consider the new treatments will not make any difference in terms of the progression of your liver damage.
Don't get any of the prescriptions filled until you understand the treatment plan, either from your current doc or any specialist you may see. You can't return that stuff like an ill-fitting sweater from Sears. Don't just follow directions, understand them too.
I agree with what everyone said above. You first and foremost need to see an experienced Hepa that is familiar with PCT and HEMO. If your Gastro is competent they will refer you to a Hepa Dr. If not ask them too or your PCP to help you find one. If you really live in Hannibal, MO you might want to consider driving to St. Louis to find an exp Hepa. There are/were several us on the forum that drove 2-3 hr for an exp Dr. You can have all of your labs done locally and faxed to your Dr. (Be sure and keep all copies of your lab reports.)!
I noticed in the other thread you said you have "lots of iron" in your liver? You need to find out exactly how much and what is causing it. Then take the proper tx to reduce your iron levels BEFORE you start tx. This should help your PCT also.
IMO it's not going to hurt to wait 2-3 months before you start tx. Find an exp Hepa Dr, take care of your PCT and possibly HEMO, then start tx. Since you are tx naïve I would wait for the new drugs to be approved which hopefully is within the next month.
I agree with the all of the other posters and have one additional concern. Something about your manner of writing gives me the feeling that you are planning to ask your GI if you should see a hepatologist, when actually what you should do is tell him you want to see a hepatologist. It sounds like your GI is a really "in-charge" kind of doctor who expects patients to meekly do what he tells them, but you really don't have to comply if its not in your best interests. Unless your insurance requires you to have a referral from your PCP first, you can just find a good hepatologist, make an appointment and tell your GI to forward all your tests and records. Doctors with an authority complex sometimes take offense at the idea of sending patients to a better-trained doctor, as if it shows weakness on their part. In my mind, the only weakness lies in being reluctant to send someone to a doctor with more extensive training. Don't be intimidated into accepting sub-optimal care, especially since your case is really complicated a lot by your PCT. you would definitely be best served by a hepatologist in a large institution which encourages interaction between departments, so there can be some coordination between hepatology and dermatology!
Side note I can't resist adding: I'm typing on my iPhone and its spell correction tried to turn "hepetology" into "grow tofu" the first time I typed it. The second time it tried to change it to "herpetology". Please forgive whatever whacky substitutions it may have made that I didn't catch!
You are getting some good advise here. This seems to be moving way too fast considering that you have PCT or rather the derm said it looks like a classic case. From your earlier post it did not say if you actually had the PCT confirmed with a 24 hour urine quarantine. I have PCT and had separate labs for that as well as to check for hemo. If this is the case the standard is to treat the PCT first usually with phlebotomies. Jules has posted a good link. Probably need step back, ask questions, and definitely see a liver specialist. My tx didn't start that quickly after the PCT dx. Seems awfully rushed.
Wow there are so many?'s I need to put togather for my Dr., I called and got an appointment Monday with him just to ask all the ?'s. His nurse did tell me that she had been working for him for 16 years and she is the one that told me to definetly come in to ask him, she also said that he has treated lots of hep c patients with all good sucsess and if he feels he cannot help me he will get me to someone who can, LN55 I was tested and confirmed with pct because of the blisters on my hands and the extra hair growth around my eyes, when they did all the bood work my derm dr had me do a 24 hour urine sample as well because she had me pee a little in a cup at her office and the color told her she needed to get that and blood work done as she said I was textbook for pct and hep c. She was so concerned she gave me he personal cell number if I needed anything just call her she also that I did not know cuz I got this letter in the mail with a dr in St. Louis at the center for Liver& Digestive Diseases, Kidney Disorders and Abdominal Transplant and it's with a Dr. Bruce R. Bacon Md but it's signed Division of Gastroenterology so I was just think'n he was the same kind Dr. I have already and mine is closer, That appointment is in Febuary and I was scared at the time so I seen this local dr. but I have not canceled it yet either just in case the local Dr. does not work out. So I will post Monday on the answer to the ?'s...
Good luck on your appointment Monday and glad you have not canceled your appointment with Dr. Bruce Bacon... Myself he is the one I would want to see. Keep in mind even though it is not until February you can always call and tell them if at all possible you would like to get in before then so if anyone cancels to let you know. Also February is not to long to wait............... Best to you.
I'm sure your current DR feels that they are competent, and I'm sure that they are, but they made a poor recommendation.
When such an important recommendation is a poor choice you really should not give them a second chance.
Bruce Bacon is top notch. Whether he sees you or not he has great doctors working under his supervision. One of the other members in the department was on a panel at AASLD, so Bacon is not the only great doctor there. It is a good facility, familiar with new treatments and treating people with serious damage.
As others have suggested, I would worry less about the distance or the wait. It will be worth it. IMHO.
I'm glad that they did the confirming labs. A good specialist is going to know how to proceed but ask questions. We know what a whirlwind of confusion this process can be. Just try to organize your thoughts and follow through with the best possible doc to see as mentioned. I felt the same way right after my PCT dx but calmed down and spent a lot of time researching and talking with my doc. Write down everything you want to ask and get answers. My docs never saw me without a notebook of questions! Good luck Monday. It will all come together.
I recommend you definitely keep your appt. with Dr. Bacon and get a second opinion before starting treatment. The current treatments can be very tough on someone who has advanced liver disease (stage 3-4)
The information in this article may be something you may want to discuss with your doctor.
Donnie, all of the above feedback you received on your very important decision on which doc to choose is very accurate. I'm a Genotype 1a, IL28b CT treatment experienced with interferon/RBV and had severe side effects both times. The second time had to go off tx before starting the victrelis due to severe rash and intense pain. Since then I've been reading about low response rates and severe sides for most genotype 1a/CT's to interferon. The first mistake I made was NOT choosing a HEPATOLOGIST at a transplant facility. When I found out I was stage 4 early cirrhosis I was so worried and anxious that I got sucked in by the GI doc who is kaiser's only liver specialist to follow my treatment. Big mistake, he took me for a ride on the inf/rbv victrelis package which was a waste of time and a huge strain on my liver and overall health and I would have been comitted to 48 weeks of that crap if I hadn't had such a early severe reaction. Make the extra effort to comute further to establish a relationship with Dr. Bacon. Don't accept any other speciialist besides a hepatologist this isn't anything to take lightly.
Donnie, I forgot to mention that my GI Liver specialist DID NOT recommend having the IL28B test done before starting treatment, I did not know anything about it until I spoke with a hepatologist. I had to insist they order this blood test to get a realistic response to treatment and by that time it was too late as I had already started treatment. Who knows you might have IL28B CC which would be like winning the lottery!
Jeff88 posted this article on another thread. Might also be helpful in your discussion with your doctor.
Big changes are in the wind. No reason I can see why you need to risk further damage to your liver and life with a treatment that is known to be too difficult for those with cirrhosis.
They didn't know this when my husband went on it and we were thrilled at the thought that this treatment could cure his Hep C. What a disappointment it was when he had to quit the treatment! But now they have numerous cirrhotic patients who have had very bad reactions to this current triple treatment (including my husband).
What I don't understand is why your doctor is even considering it.
As others have said make sure you see the hepatologist, associated with a transplant center.
Hi, from reading your other posts it seems like your so anti Interferon that you think it's ok for someone to wait until either they have become cirrhotic or let cirrhosis set in. Being cirrhotic is a whole new game changer for people and their risks of HCC stay with them.
I 100% agree with people waiting on what is about to be approved within the next month but they include Interferon for type 1. You seem to be suggesting that they wait even longer on drugs that are still in trials and that comes with a lot of risk. In the link you provided was also this.
"“There is no doubt we are on the verge of wiping out hepatitis C,” said Dr. Mitchell L. Shiffman, the director of the Bon Secours Liver Institute of Virginia and a consultant to many drug companies.
Over the next three years, starting within the next few weeks, new drugs are expected to come to market that will cure most patients with the virus, in some cases with a once-a-day pill taken for as little as eight weeks, and with only minimal side effects."
And also this..."Yet even if the virus is cleared, people who were once infected may still have an increased risk of liver cancer, especially if cirrhosis, a scarring of the liver, has set in."
Also lets not forget what another well respected doctor said..." METAVIR scores of F3 and F4 can be particularly challenging to cure," said Maria Beumont, M.D., medical leader for simeprevir, Janssen.
And could you provide links to back this statement up as I cannot find that anywhere, I am sorry about your husband but there have been many of us that are alive today that treated having cirrhosis and did not have the problems you seem to suggest the majority does.
" But now they have numerous cirrhotic patients who have had very bad reactions to this current triple treatment (including my husband)."
"Hi, from reading your other posts it seems like your so anti Interferon that you think it's ok for someone to wait until either they have become cirrhotic or let cirrhosis set in. Being cirrhotic is a whole new game changer for people and their risks of HCC stay with them."
Not so. My husband's experience with triple treatment with Incivek as a Stage 4 Cirrhotic when he started treatment leads me to caution others in the same situation. I would never recommend anyone wait until they are cirrhotic to start treatment. I'm really not sure how you came to that conclusion as I thought I was pretty clear that my husband having Cirrhosis made treatment with interferon and ribaviran much more difficult.
I know as well as (unfortunately) you apparently do what a game changer being cirrhotic is. The triple treatment my husband took left him extremely anemic, needing numerous blood transfusions. He went into kidney failure which thankfully was reversed in time. Experience has been a very tough teacher. Sadly another poster stated that he lost a friend to this treatment when his blood platelets went so low his organs were affected. I know my husband was on the same path had he not stopped treatment when he did.
As I posted on another thread, my husband has no regrets of what he went through because he remained undetected for the virus 8 months despite only lasting 5 weeks on treatment. We like to think that those 5 weeks on treatment kept him from developing HCC.
I do not presume to suggest what others should do. What I do absolutely
know is that everyone needs to educate themselves and not just rely on what they are being told by their doctors. I continue to research the latest because
despite having had a liver transplant my husband is now positive again for Hep C. After our experience with treatment, we do know that every patient is different and not all will respond to treatment the same way.
I previously posted these links to reports from two hepatologists who report
on the latest advances toward an interferon-free therapy. I believe they speak for themselves in terms of why researchers are working toward interferon free therapies.
I regret that you apparently feel that I was advising everyone to wait for the new treatments which may be two years away. Not so. I am very happy to know that there are those here who treated despite being cirrhotic and did not have the problems my husband had. I just think everyone needs to go into this knowing what the possibilities are for very difficult side effects which can be life threatening.
I wish you and all the very best.
It seems you have misunderstood my posts. My husband had Stage 4 Cirrhosis when the triple treatment with Incivek was introduced. He lasted 5 weeks on it before he
I am sorry if I misunderstood your posts as I was basing it mainly on this.
"The information in this article may be something you may want to discuss with your doctor.
Since the OP is either cirrhotic or borderline and as you stated these treatments could be 2 years away there would be a lot of risk in even thinking about not treating right away. Once one starts to go into Decomp. then even these new meds might be to late.
And yes I am cirrhotic and was lucky to have been able to treat before there was a need for a Transplant. That's the whole goal to try and rid oneself of Hep C before they have to go through what you and your husband has been through.
Hoping for the best for your husband, I think we are on the same page.
I have not been posting for a good while so I'm not sure what your status is.
I am concluding that you are now free of Hep C. Is that right? If so, does this mean you will not be needing a transplant? Is your liver repairing itself?
My husband had already decompensated when treatment was started. He had hepatic encephalopathy, ascites, edema, varices, etc. I think that explains the difference between your ability to go through the full treatment and his only lasting five weeks. Perhaps that is a better indicator of who may experience much more difficult side effects.
The reason I am posting here is because I remember well how comforting it was for me to come to a place where I could get first hand information
from those who were living with Hep C. I hope that posting our experience
will be helpful to someone.
Ok, Confused, So waiting till february isn't going to be too late being I am chronic hep C and stage 3/4 chronic liver, because I am goin in to see my Dr. tomorrow to tell him I want to wait till the new meds come out. I should not have to ask him for a referral because I did get an appointment in the mail, I beleve my dermatologist got me that appointment because she is the one that diagnosed me with pct and ordered the blood work to confirm it and also having the Hep C virus, I know she told me that don't mess around and get to St. Louis but when I seen my primary care dr.having the blood work done she told me that the local gi has handled lots of hep c cases so I went and seen him and he ordered the biopsy to confirm the 3/4 liver and said he was shocked due to the ultrasound did not show enlarged or signs of being that bad, I am going to call Dr. Bacon tomorrow before I goto see the GI dr. and ask them some ?'s as well..
Thanks guy's means alot that you all do what you do to make sure people get educated about this..
Donnie....... No waiting until February is not going to hurt you one bit, in my opinion it would be the best thing you could do.
Nan, yes I am now cured so fingers crossed a TP is not in my future, and yes once one goes into decomp stage treatment is much more riskier and a lot harder. I am glad your posting again as you have so much knowledge to share with the TP process.
Donnie just a few years ago treatment was just Interferon and Ribavirin and for genotype 1 we treated between 48 and 72 weeks with about a 40% cure rate. Then triple treatment came along and treatment was between 24 and 48 weeks and the cure rate went up to about 75%. In about a month the newer treatment will be here with maybe just 12 weeks of treatment and cure rates around 90%.
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