Author Topic: With new drugs on the market-my doctor says to continue waiting. (Read 32182 times)

JessicaGN · « **on:** December 29, 2013, 08:05:18 pm »

I was diagnosed with hep C genotype 1 about 2 years ago. I saw a specialist a few months ago, and she told me that we should wait until around December 2013 to start treatment, because a more efficient and more tolerable drug would be approved by the FDA. So since then I've gotten a liver biopsy and taken many blood tests, which showed that my liver is in a very mild stage of damage (not sure what the actual medical term would be), and because of that, despite the release of this new drug, my doctor recommended I wait another year or so, to see if something even better gets approved. My concern is that waiting will only make things worse, so I'm looking for second and third opinions, to see if I should get started on the new drugs that are out, or if it would I fact be better to wait. I'm scared and I feel like I'm being shoved off to the side to "get worse." I want to get better, and I need some honest feedback. Thank you!

lporterrn · « **Reply #1 on:** December 30, 2013, 12:20:37 am »

Hi Jessica,
The decision to undergo treatment is a personal and complicated one. I have been through treatment 3 times, written 2 books about it, and am a nurse who has worked with hep C patients since 1998. My take on this is that you are being given excellent advice. The treatment that is available now uses ribavirin, a drug with quite a few side effects. My guess is that a better, ribavirin-free treatment will be available before the end of 2014. If you don't drink, watch your weight, eat carefully, and live the healthiest lifestyle you can muster, then waiting is an excellent choice. However, if you don't mind feeling a bit grouchy, quite tired, maybe have a rash, insomnia, and nausea for up to 12 weeks, treatment now is an understandable decision. I don't think there is a wrong choice here -it is a matter of finding the right one for you. It is hard to be ready to go through treatment, and then be told to wait, so if I was in your shoes, I don't know what I would decide.
Hope this helps.
Lucinda

JessicaGN · « **Reply #2 on:** December 30, 2013, 11:14:24 pm »

Thank you for your input, it was really helpful. I just felt like I needed some feedback from someone who personally knows what I am struggling with, as I don't have anyone in my life to really talk to about it. I feel better about the wait. I plan to do some more research on the new developing treatment drugs, because I have a lot more to learn. I appreciate your comments, thank you!

Jessica

jberlin · « **Reply #3 on:** January 01, 2014, 05:27:51 pm »

Jessica,

Like Lucinda, who knows a good deal more about it than myself, I agree it is probably OK to wait a little while for new treatments. The hope is 'no interferon', 'no ribavirin', and 12 weeks. Currently for geno 1 the best treatment is sofosbuvir with interferon and ribavirin for 12 weeks. The side effects are tough, and the real risk is depression and low blood counts. But at a 90%+ cure rate, I would ask you a few more questions. 1. Do you know when you contracted? I would want to know how fast or slow liver damage was occurring. I had Hep C for 35 years and my liver damage was minimal, but if you are seeing faster progression, that is a consideration. 2. What is your age? I was advised to wait as well, but upon consulting with my hepatologist I opted to proceed with the 24 week Incivek triple therapy, after my son graduated high school, just at age 56 because I felt I was strong enough to withstand treatment, and as I approached 60 who knows. I am cured now. 3. Insurance. The current best treatment is around $80,000!

We may be within months or a few years of easier treatments, but sometimes 'getting it over with' is worth considering! Keep us informed as to how you are doing. Happy New Year! & Good luck! -jack

JessicaGN · « **Reply #4 on:** January 02, 2014, 12:19:13 am »

Jack,

Thank you for your comments. I was diagnosed approximately 2 years ago, when I was 18 years old. I am 20 now, and at the present time I have great insurance. However, $80,000 made my heart sink to my stomach. I can only imagine that it'll only get more expensive. I do feel that I am strong enough to handle the side effects, but I'm worried that I won't be able to continue working full time if it's really as bad as I've heard it is, because my job is quite physical.

Were any of you all able to work while you were going through treatment? If so, did you inform your coworkers what you were going through?

lporterrn · « **Reply #5 on:** January 02, 2014, 10:11:12 am »

Jessica,
With good insurance, the $80K should not be a stumbling block. Gilead is offering ways to keep the patient costs down: www.sovaldi.com

I didn't realize your age - younger people tend not to progress quickly, so even if you had this 20 years, you may be at an earlier stage than someone who is older and who had it for 20 years.

Lucinda

jberlin · « **Reply #6 on:** January 03, 2014, 04:38:51 pm »

Jessica,
At your age, you can certainly wait a while. I did not miss work, but did have flu-like symptoms many days, and over time got very weak. I did inform co-workers of my treatment, and the more people cheering you on the better I found, especially the people closest to you. Of course, I did 48 weeks, then 24... so 12, should be much easier. I have to ask whether you have adjusted whatever got you Hep C in the first place? My advice for you right now would be to not drink alcohol and follow hep C news for even better treatments to come, likely in less than 2 or 3 years... Keep us informed, and good luck! -jack

JessicaGN · « **Reply #7 on:** January 03, 2014, 05:38:51 pm »

Jack-

I'm not sure if this is the correct answer to your question or not, but I do know where I contracted, as I caught it within a very short time after exposure. I was a heavy IV drug user, and got tested about every 3 months. When I got the call from my doctor, it was extremely difficult but I knew I had to think of everyone I might of infected within the margin of time between my last negative test and my positive test. Fortunately, the few people that I did come into contact with did not end up being infected (or so they told me). Today is actually the one year marker of my sobriety from all drugs, including alcohol. I have good support within my family, but I am still concerned about telling my coworkers, as I understand the outside perspective, as well as the social stigma on people that have done and experienced what I have. Anyway, I didn't mean to go on so long-I hope that answered your question. Thank you again.

Jessica

jberlin · « **Reply #8 on:** January 04, 2014, 06:27:05 pm »

Well, for me what you did yesterday is nowhere near as important as what you do tomorrow, and "Today is actually the one year marker of my sobriety from all drugs, including alcohol" is the best news you could provide us, for your and your family's sake. Keep up the effort, and all will work out for you. Here's to a great 2014! -jack

JessicaGN · « **Reply #9 on:** January 04, 2014, 10:59:40 pm »

I agree. Thank you for all the great advise!

Jessica

Alongtimenow · « **Reply #10 on:** January 10, 2014, 01:57:01 pm »

I got Hep c at 19 in 1985 diagnosed mid-late 20's (after many years of tests) . Interferon was the choice ,I chose not too . No genotype test then anyway. Now its been almost 30 years I don't want any treatment . But if I could have been young like you with all this progress I might have considered hard for treatment . don't fear waiting a little while . look I am still alive.

JessicaGN · « **Reply #11 on:** January 11, 2014, 10:22:46 pm »

Thank you. I hope you are well, and we are glad you're still alive!

Alongtimenow · « **Reply #12 on:** January 12, 2014, 12:07:07 am »

I have done hair the whole time I have had hep c . only bothers people if you bleed on them .

JessicaGN · « **Reply #13 on:** January 12, 2014, 02:44:39 pm »

I work in a hospital, and I am always very careful. But I believe my hospital has a requirement of employees with any type of hepatitis to not work.

lporterrn · « **Reply #14 on:** January 12, 2014, 05:19:43 pm »

It is unlikely, and possibly illegal for a hospital to forbid a hep C+ employee to work - universal precautions protect patients AND health care workers.

JessicaGN · « **Reply #15 on:** January 12, 2014, 11:02:06 pm »

That's exactly what I thought, however I asked my doctor for their opinion before I applied for the job if I should lie on my application where it asks if you have hepatitis or not (on the vaccination records portion), and he told me that he thought I should keep it to myself because of the hospitals policy of those who are in an active stage of hepatitis shall not work. I was and still am really conflicted about it. I live in a very small town, and as you can imagine, the social stigma that comes with world wide problems such as hepatitis C, are very seldom talked about where I'm from unfortunately. When I first got diagnosed, I thought I had just received a death sentence, because I was extremely uninformed.

jberlin · « **Reply #16 on:** January 13, 2014, 01:04:48 pm »

Jessica,
I can understand your conflict, and now even your dilemma. If you lied on your form, that can be grounds for termination regardless of what the policy is on Hep C. As a small business owner, I think it is always best to tell the truth, but you are where you are now. There have been cases where fired Hep C workers have sued under the ADA, but that is an awful alternative. Not knowing the people, or the HR department, I cannot advise - but technically you do not pose any risk to anyone unless you do something really stupid like the recent case of the hospital worker using patient syringes. Perhaps this gives you more reason to get cured sooner than later... let's see if a non-interferon option becomes available within 12 months, and if not go with the Sofosbuvir triple therapy. Will your insurance filings show up in HR assuming you have company paid health insurance?

I assume you have been vaccinated for Hep A & B for your work anyway? Everyone with Hep C should get vaccinated foir Hep A & B as we are in a higher risk pool.

The good news is you can get cured very quickly! Keep us apprised. -jack

JessicaGN · « **Reply #17 on:** January 14, 2014, 12:36:00 am »

Jack,

I have been vaccinated for hep A and B. My insurance does go through my work, so I'm not sure if they could get my health information-if they can, I'm guessing they can't legally say anything due to the patient privacy laws. Anyway, on my application I left that portion blank, so I guess it was a lie of omission. Those are the kinds of things that I wish could be talked about without fear. Thanks for your advise, again.

Jessica

jberlin · « **Reply #18 on:** January 15, 2014, 09:58:35 am »

Jessica,

Pulling for you! What I did was look out on my calendar and chose when I was going to 'just do it' (the 2nd time). Maybe, as I said before, you watch the new drugs for a year or two, then if the treatment is 12 weeks and not so bad, meet with a doctor, get pre-approved through insurance and find a slower time of the year, like not around the holidays. For me I wanted to wait until my son graduated from high school, so I started the weekend after that. The good thing is you are not in any rush... Do come back and let us know when you decide to do something! All the best! -jack

JessicaGN · « **Reply #19 on:** January 15, 2014, 08:30:38 pm »

I absolutely will, I'm sure I'll need your advise when the time comes lol. Thanks for everything.

TrimKing · « **Reply #20 on:** February 15, 2014, 08:38:43 am »

I would advise you to wait, as there is an awful lot in the pipeline. I have had this disease for over 30 years.... declined conventional treatment.

I just completed a 6 months clinical trial of Sofosbuvir and Ledipasvir.... 8 weeks of one combo pill a day and cleared the virus in the first week... absolutely no side effects. They said everybody in our group attained svr

I imagine this will be put on the fast track for approval.

With all this coming up... I can't for the life of me see why anyone would start treatment with interferon

jberlin · « **Reply #21 on:** February 15, 2014, 09:32:09 am »

Yes Trimking, for 'most' situations it seems prudent to wait. However, we need to make sure people don't read this forum and take anything as absolute. Anyone with Hep C should consult with a liver specialist. There are lots of new, better drugs coming down the pipe, but certain genotypes may have to wait longer, and there could be other delays, though it does look very good right now that new drugs are being fast-tracked by the FDA. But, for certain individuals because of their health situation, right now, waiting may be too risky and they shouldn't. But for 90% of the Hep C cases out there, I agree it is worth waiting through 2014 to see what treatments become available. -jack

JessicaGN · « **Reply #22 on:** February 15, 2014, 08:48:33 pm »

I agree, it is important to visit a hepatologist because everyone is different. I have traveled to see different doctors and reached out to many people, and have come to a decision to wait. I appreciate your input about your experience with the new medicine. I hope it continues doing good things for people. I think it gives hope to a lot of people like me.

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Author Topic: With new drugs on the market-my doctor says to continue waiting. (Read 32182 times)