Treatment starts tomorrow

Hello,

A couple months ago I was diagnosed with Hep C1a. I am 44 years old. My Viral load is over 11 million and I have no liver damage. I begin treatment tomorrow and I am a little unsure what to expect. It is the triple treatment ( Ribavarin, Peginterferon, Inclivek). I have read all the horror stories on the internet and my doctor calmed my fears somewhat, but nevertheless I would be lying if I said I wasn't scared.

Primarily I do not want to lose my job. I can deal with the rest of it I think as long as I can remain well enough to go to work. My job is fairly physical and a good deal of it also involves driving big trucks. Dump trucks, etc..

I would be interested in hearing how everyone else did with this specific treatment and if you were able to continue working.

From what I have been able to find on the web, those treatments are still a ways off and are really pretty similar result wise for people who haven't been treated yet. Nevertheless, I got the drugs here and I start in the morning.

Were you able to continue working during treatment? My doctor seems to think that as long as I do the injection on Friday nights, I should be able to go back to work on Mondays. He also gave me the impression that the side effects would get better as I went and that the first one was the worst. The gal who trained me how to dose myself told me the same thing.

That I don't know. I have only had this job for a little under a year. It's a very good, union job with full benefits, but I have no sick time. In fact, it's the first time I have ever had medical insurance and that's how I even found out I had this. I have to have had it for many, many years. There is only one way I could have gotten it and it was at least 20 years ago, possibly longer. I know that I may be able to use the FMLA, but I wouldn't get paid. Most likely scenario if I can't work is that I will stop treatment. I HAVE to work.

        one more thing,  its not the interferon injection that causes the extreme side effects, its the incivek that causes the steven johnson rash, that can be fatal, and the passing shards of glass during BMs.  food for thought;  kaiser stopped using incivek, and connie said mayo has also stopped rxing.  it is still available for those that cant wait, just sayin

        you are young and will be ok either way.  just trying to help

Wow I wish you would listen to Barry and get a second opinion. This is SO important to your future. Are you seeing a hepatologist?
Hard to believe while we are so close to the "good stuff" coming out. Especially where you say you need to work. My brother only started 7 wks ago and no way could he work full time especially at a physically taxing job.

Recently the hepatologist tried to get the new drug for my brother but couldn't. It would have been so much better and the success rates are amazing. So he had to drop the incivek because he got pancreatitis And cannot go back on it.

He didn't have the luxury of time like you do.

Why not skip tomorrow and tell your doc you want to do a little research a d get a second opinion. I personally think our Barry is an expert and I hope you take his advice And wait. We can recommend some good centers in the US that have expertise in this area if you give us your whereabouts.

Post Edited (Mae be here) : 7/19/2013 12:15:07 AM (GMT-6)

Barry, my TC did say that I would not be able to start treatment and then just stop...that I have to see it through. Maybe what you mentioned is why. I thought you had said that the new treatment coming out is not available to genotype 1a. ???

The only treatment I've received was interferon injections back in '93, and then only for a few weeks.

Hugs,
Connie

Barry, does having a new liver for someone who treated in the past make you treatment naive again??

I understand that you still have hep but it IS a different liver. Maybe one can trick a new liver into thinking you're treatment naive. :)

Post Edited (Mae be here) : 7/20/2013 1:00:11 AM (GMT-6)

@ Connie...hello. A busy few days for us, unrelated to transplant list or medical. I have seen your posts about your prior treatment with Interferon only, and for a short time frame. So, what I know about interferon treatment only in that time frame. Dose was 3 shots of interferon per week, not one....like now. That means in a 3 week time frame, you would have as much interferon as is now given in 9 weeks. And that is not interferon treatment naïve. Sorry to say that, but my opinion.

I honestly feel I would want my previous records from the treating physician in 1993. 

 Just one person's opinion, kiddo.  I know your struggle with a treatment option wish. We waited for the triple combo (incivek/riba/interferon) and then he was geno 3a, and not eligible. But he knew he was cirrhotic and had little time to attempt eradication prior to transplant listing. Barbaric treatment! My husband was bedridden the 2nd time treating, running fever -low grade- for most of 6 months. Very opposite of his first treatment, which was an epic FAIL.

 Of course, being as sick as he was the 2nd time, and having life threatening complications in the last 6 weeks, not dropping dose and risking a lot, having a 5 day inpatient stay, with surgery, rescue drugs, he forged on. The bravest man I know. And, he obtained SVR .

Eradicated Hep C. I do think soon there is something out there for you, but get those records for best decisions.  Big hugs. Themiz 

edit for some errors. I am tired.

Post Edited (themiz) : 7/19/2013 8:47:29 PM (GMT-6)

Well, I talked to my Dr. ( he is a hepatologist and pretty much specializes in liver problems and he has been doing it for many years) as well as some other nice folks at Pegasus Support Services.

My Dr. thinks I am the perfect candidate for this treatment because as of now I have very minimal scarring and I am young(ish) and healthy. He advised me to get other opinions if I had reservations but that in his opinion this was the best course of action to eradicate the virus with minimal residual damage to my liver.

I appreciate everyone's concern though, you all seem like a nice bunch of caring people.

Nevertheless, I began tx yesterday afternoon. Last night was a little rough. I had the chills so bad it was unreal. I laid under the blankets fully clothed for an hour and was still uncontrollably cold. This subsided and after 4 doses of Riba and Incivek and my injection yesterday I am pretty much left just feeling like I have the flu. Seems manageable enough so far. I suppose the Incivek symptoms will worsen as treatment goes on, but I am hoping that the Interfereon injections will at least remain as tolerable as they are now. I am glad I do not have to work today, but I think if my band had a gig tonight I could do it, which is important to me as well.

Anyway, thanks to everyone for their support and advice and I look forward to updating my progress, hopefully in an attempt to paint a picture for generally young and healthy patients that is a little less scary than most of the **** I have seen on the internet.

**David** said...
In my case and others I've spoken with, the first shot of interferon is the worst, then the second and third week aren't as bad. The third week is about what you'll experience for the remainder of the treatment. Ribavirin caused me more problems, thrush and sores, not to mention hair loss. I can't speak about Incivek, as I never used it. I found that if the interferon was injected on Friday morning, it didn't hit me until that evening. By Monday, I could go to work, with minor effects from the shot.

Injected Interfereon around 2 PM. Hit me hard around 8PM. I feel much better now. My schedule is to do it after work on Fridays and hope I am good to go by Monday morning.

I guess I thought the bulk of the other side effects were caused by the Incivek. That would have been nice since I only have to take that for 3 months. I'm not looking forward to some of those side effects because at some point I will have to explain them to co-workers and bosses, but as long as I can tolerate working at least I can feed myself.

          hey defbass,  ok!!!   you started tx.  if you need any help with side effects or remedies,  dont hesitate.  does your state have state disability insurance.  you can take off what ever amount of time you need ,up to one year with good pay.  and its tax free... fmla would be there to fall back on, if necessary.

          best of luck with your tx and let us know how you 4 week v/l milestone goes.  heres hoping that you can get by with 24 weeks.

                                    barry

ppm guy said...
hey defbass, ok!!! you started tx. if you need any help with side effects or remedies, dont hesitate. does your state have state disability insurance. you can take off what ever amount of time you need ,up to one year with good pay. and its tax free... fmla would be there to fall back on, if necessary. best of luck with your tx and let us know how you 4 week v/l milestone goes. heres hoping that you can get by with 24 weeks.
barry

Thanks Barry. No, my state doesn't have anything like that, but I think my work does. It won't cover my full pay and I'm not sure if I am covered yet, as I haven't quite been there a year. FMLA is another option, but again, it doesn't pay as much. I just hope I can continue working. Is it everyone's experience that the side effects get significantly worse with time?

I will definitely keep you updated with regards to my treatment and I sure hope I can get by with 24 weeks too.