New treatment

[liz276]

I went through 48 weeks of Peg and Riba. Hep C was undetectable during treatment. Have been off for 1 year this month and just had blood work done last week and the results are in! Viral load back up to 350,000. So going to C Doc after Columbus Day week-end and will discuss new choices. Incivik or Victrelis. I guess NIC is shorter tx and have had excellent results. Worse sides than VIC. Anyone out there tried either one and what was it like. Want to make right decision on tx. The only sides I had on Peg & Riba was fatigue for the whole 48 weeks and slightly itchy skin. What should I expect from either treatment?  Thank You to anyone who responds and gives me some advise. I will be 60 in October and am retired so I do not have to worry about going to work. I can be home and be sick. Lizbee

[pooh55811]

"Hep C itself causes way more problems than treatment, in my opinion."

Don't try to turn my post around in order to try to make temporary side effects into long term medical issues. My previous post is about temporary side effects that should have been treated but were ignored. I listed them so the OP knows to be assertive in getting appropriate TX in a timely manner.

I stick firmly with the assessment that Hep C itself causes way more problems than treatment. Side effects from the drugs (temporary anemia, neutropenia, depression, nausea/vomiting, rash, rectal problems) that occur during Tx can be and should be appropriately treated immediately. If the side effects are appropriately addressed in a timely manner instead of being ignored, we would have a much easier treatment. I sailed through the last 6 months of Tx because the side effects were finally under control. I could have sailed through the first 6 months too had the side effects been treated.

When I say sailed through, I don't mean there were no side effects. There were. But I can deal with fatigue, malaise, brain fog, no energy, no motivation, light headedness, slight nausea, tinnitus, muscle and joint aches, etc. for 48 weeks in order to attain SVR.

Research has shown that Hep C causes liver damage as well as multiple serious extrahepatic medical problems, problems that shorten life and/or greatly affect the quality of life. On a personal lever, here are the Hep C  related problems that I was experiencing before Tx:
* Systemic Vasculitis with pericarditis, pleuritis, hemolytic anemia - that was close to a year of feeling just like I did during the first 3 months of Tx. I was never the same after that vasculitis.
* Sudden unexplained weight gain - I had always been a bean pole up until I had vasculitis. Then suddenly I started gaining weight for no apparent reason. I attribute that to Hep C induced insulin resistance.
* Gradually climbing blood glucose (also since vasculitis). I attribute that to Hep C induced insulin resistance.
* Gradually worsening Glomerular Filtration Rate (kidney problems). I attribute that to Hep C induced kidney manifestations.
* Dry Eyes - felt like sand in them.
* Increasing fatigue and malaise which were adversely and noticeably affecting my quality of life
* Increasing joint and muscle aches and pains including some Hep C induced arthritic changes
* Peripheral Neuropathy
* Skin manifestations
* Asthma  (late onset:  ie at 35 years of age)

So, for me, the Hepatitis C induced problems I had prior to Tx (which would have kept getting worse) were far more problematic and life altering than the temporary side effects of Tx.

If, for some reason, I do not attain SVR this time, I will treat again in a heartbeat to rid myself of this debilitating disease.  

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf

http://www.ccjm.org/content/72/11/1005.full.pdf

http://www.hcvadvocate.org/hcsp/articles/Bonkovsky-2.html

http://jid.oxfordjournals.org/content/early/2012/07/13/infdis.jis385.full

[Idyllic]

I know this might not make sense and I can't really explain it but: I did not want to treat with Victrelis because I knew I would not have more than a one log drop in the four week lead in. It might not be that big of deal but it is a head trip I did not want.
____________

To me Pooh's point about just how well your doctor will respond to side effects is crucial. There is Pro/Con for both meds but at least some degree of Anaemia is virtually unavoidable if you are going to treat 48 weeks.

Find out Now if your doctor uses Procrit/Epogen. You will find out that studies have shown SVR is not negatively impacted with Riba dose reduction on Triple. Remember these meds have barely been out two years and they are learning more and more as more people treat. I would not have wanted one before I was UND and I did not want to be on 600 mg for the remainder of treatment either.  

Ditto with treatment for other side effects.

Ask questions NOW before you treat. Ask for a contact person who will fax/email/snail mail your labs. Likewise, for the number of the NP or the person you contact when sides flare up.
_____________-
Getting up to take pills:

* happens in the first 12 weeks with Incivek and that is it. But remember with Incivek you have to take each dose with a whopping, gross and disgusting 20 grams of fat!!

With Victrelis - it depends but I think (think) you would do it for 36 weeks after the lead in.
_______________

[rambleon40]

"Hep C itself causes way more problems than treatment, in my opinion."

As your story shows, I guess ...?

Good luck, pooh.  Hope you got that SVR.

[goater]

Liz
I'm in week 48 of triple tx w/Vicrelis.  Treated with Peg/Riba (SOC) 6 yrs ago (non-responder) and also experienced fatigue and itch.  If your fatigue was due to anemia from the Ribavirin it will likely be worse if you choose Vic.  Hemoglobin during this treatment is running 1.0-1.5 points lower than first Tx. and that is with taking Procrit beginning week 16.

No significant change in itchy skin this time with the addition of Vic.  It was nasty before and is nasty now.  I've been kinder to my skin this time and started using perfume free soaps, laundry detergent, lotions, etc. before and throughout treatment so that is tolerable.  

I've had none of the anal problems commonly associated with Incivek.

Did your labs tank last time?  Did you have to dose reduce during the course of your tx.?  If so, you might ask if your doctor will consider rescue drugs (Procrit and/or Neupogen) rather than reducing Tx meds if needed in the future .  I've been able to stay on full dose this time but it is only because of both rescue meds.   Both drugs are very expensive and have their own set of side effects, especially Neupogen.  

Best wishes, marty

[Dannyboi7]

You relapse one year post tx?

This might be of some interest to you,mind you this study was done  with non cirrhotic naive patients.

100% SVR in IL28B SNP rs12979860 C/C patients treated with 12 weeks of telaprevir, peginterferon and ribavirin in the PROVE2 trial

http://www.natap.org/2012/EASL/EASL_43.htm

[8nickers8]

Didn't they do follow up bloodwork for 6 months after completion of your treatment?

[sadmommyjoy]

I agree with Pooh. The minute your doctor does not now how to take care of the side effects, you should think about getting another doctor. I would just begin with a Hepatologist to begin with if possible. There can be many different side effects and getting treatment for those quickly can make a big difference. One more thing, when you start treatment, I would give those you are around a lot copies of info about the meds because some ppl just don't understand the gravity one might experience from side effects. Best of luck to you.

[pooh55811]

SVR means Sustained Virologic Response (cure). A person attains SVR if the person is undetectable for virus at 24 weeks after the end of treatment.

SOC means Standard of Care.

I did Incivek, Inteferon, and Ribavirin. I had a rough six months, mainly because my doctor and case manager did not treat the side effects. The case manager told me before treatment that they had treated hundreds of patients and that they treated the side effects. The case manager also told me before treatment (after I had asked 3 times)  that they gave Procrit if the hemoglobin dropped. (She lied. When my hemoglobin dropped, I asked them about getting the paperwork ready in case I needed Procrit and I was told that they did not give Procrit at all, that they cut the Ribavirin dose in half instead.)

I had bad nausea and severe bloating from the first week on. It kept getting worse. I felt like I was carrying a 60 pound baby. I could never get comfortable. I told the case manager every week about this and she did nothing. I got sicker. I could not eat anything except Greek Gods Yogurt and toast or whole grain crackers. My ankles and feet swelled. I had some vomiting.  I could barely stay standing or sitting upright for more than a short time. I had frequent premature heart beats and I had runs of rapid heart rhythm of 180 beats per minute (supraventricular tachycardia). I had an episode of severe reeling dizziness and I could not stand upright. I kept lurching to the side. I barely made it to the bed. My blood pressure went up. I was weak, lightheaded and fatigued. About week 7 or so, I could barely make it to my appointment. My case manager got nervous and sent me for a cardiology appt.and consultation.  I had an  electrocardiogram and an echocardiogram, and I wore a heart monitor for a month. Finally, I told the case manager I had to have something for the nausea. Finally I got a prescription for Zofran but this was 8.5 weeks into treatment. After a couple of doses of the Zofran, I felt much better, still nauseated a little, but much better. I took 8 mg every 8 hours. Within 2-3 days all of those cardiac symptoms disappeared. The tachycardia stopped, the BP went down, the swelling in the feet and ankles disappeared. No more major nausea, I could eat food for a change. The bloating disappeared. I felt so much better.

I got the major severe internal rectal pain within days of starting treatment. It was terrible. The pain was so bad it felt like I was crapping shards of glass (inside the rectum, probably fissures).That is what it feels like, someone cutting you up inside. I would break out in a cold sweat. I had to hang on to the vanity/sink. I thought I would faint from the pain. I told the case manager and it was deer in the headlights again. She had no clue. Finally they gave me some xylocaine with hydrocortizone cream. That did nothing for the internal pain because it is an external medication. I had diarrhea so I used Loperimide to control the loose stools. So, accidentally, I discovered that as long as the stools were very, very firm, I had no internal rectal pain.

At about week 10 or so the rash arrived (hives, little red bumps, pinpoint sized bumps, reddened skin, flat dark red spots the size of a dime and some the size of quarters). The case manager ignored it even though she could see it on my arms (she never bothered to look at the rest of my body). After another 3 weeks with the over the counter Benadryl and cortizone cream, which were useless, it just kept getting worse and itching like crazy. I finally told her that I had to have something for it. I finally got prescription Fluocinonide ointment. This would work for a short time. Then it would itch again. It took 3 weeks to clear an area but then the rash moved next door. After about 6-7 weeks after it began, she sent me to the dermatologist. The dermatologist ordered more fluocinonide ointment, clobetesol solution (for the rash on my head), and Hydroxyzine. This helped, but she had to keep increasing the Hydroxyzine to 50 mg  every 6 hours to get it under control. By this time it was 6 months into treatment. During all of this I had mainly stayed home except for Dr. appts. because clothes made me itch. I spend about 4 months in my very lightweight short cotton nightgown. I had difficulty sleeping due the the rash and itching. In addition, the drug reaction made me feel like crap.The other problem with feeling so ill for so long is that I was not really doing anything. This impacted my overall general health and strength so that even after I felt better, I was very weak, and it took me awhile to get used to being active again. So you see why I said that the first 6 months were He!l.

Personally, I don't think my main problem was the side effects. My main problem was that my doctor and case manager had no clue how to treat the side effects and they were reluctant to treat the side effects. I told them every week, but they did nothing. Once the side effects were finally under control (6 months later) I started feeling better every day and finally started to feel like a person again. By late spring I was able to accomplish some things. By mid summer (in some ways) I was feeling better than before treatment.

When I started to get anemic (32 weeks into treatment), they said they don't give Procrit.

I had  had enough and I switched doctors. I got a Hepatologist in 70 miles away, but it was worth it. I should have switched in the beginning, but I knew absolutely nothing when I started. My original team said they knew what they were doing, that they had treated hundreds of patients, and that they treated side effects, so I trusted them. Wow! Biggest mistake I have ever made.

One thing that some doctors don't seem to understand is that the nausea is a systemic problem and it is doing more than just causing nausea/vomiting (different degrees in different people). The rash is also a systemic problem, a drug reaction. It does a whole lot more than give a person red bumps and cause itching. Some doctors don't seem to understand any of this. The other thing they do not seem to understand is that these side effects must be treated immediately or they can and will snowball out of control.

I am finished with 48 weeks of treatment  (finished Aug. 25th). Every day I feel better. In some ways I feel better than before treatment. I no longer have major fatigue, back pain, joint pains. My blood glucose is dropping. I lost 66 - 67 pounds. I am certain the Hep C was causing my sudden weight problem.  (That weight gain started after I had systemic vasculitis in 1993-1994, another Hep C gift.) I have more energy and stamina. I feel like doing things again. So life is good.

I was detectable at 4 weeks which is why I had to do 48 weeks of treatment. I have been undetectable since week 8. I had viral loads every month. My last end of treatment viral load was done with a very sensitive test that can detect the virus down to 5. I have another test in 2 months (3 months after end of treatment). I am hopeful that I will attain SVR.

BTW, I am not trying to scare you away with my story. To be honest, if I had to do it again, I would. Hep C itself causes way more problems than treatment, in my opinion. The only reason I reiterated my story is so that you know to be more assertive than I was and so that you will know what to ask for for the side effects. My treatment would have been so much easier if my doctor and case manager had treated my side effect immediately.

Best of luck. Keep us posted.

[liz276]

When you say you had to wake up in the middle of the night to eat and take meds are you talking about prescriptions for side effects from your treatment?Hope all goes well for all of you who responded to me and to all the others fighting this battle along side of us.Thank You.  Liz

[liz276]

Thanks for you info. Good luck.

[liz276]

Thank You. I have got a bit of other info that will help me make a decision.

[liz276]

Thank You for your information. I will print all the responses and bring them with me to the Doc. I will have her give me prescriptions for all the meds you mentioned. I will want them on hand so if I notice any signs I will just take them and nip it in the bud. I do not know some of the abbreviations, what does SVR stand for? Sounds like you were on both Inc and Vic for the treatment. I am going to bring your reply to me to the Doc for her to read. Also, what is SOC? How are you doing now. Any blood work done to see? Good luck to you in the future. I hope they come up with something for all of us in this horrible position. This *****!! We need a cure and we need hope of a cure. My Doc told me to think about it. I had no symptoms of Hep C. I was told I had Hep B years ago. And have been living with this from about 17 years old until they found out by accident that I had Hep C. Had a liver biopsy and it was not bad news at all. Have a little fatty liver but no other issues. She said I could wait and see if I choose to. They may be coming out with some other new drugs in a few years that may have a better CURE RATE. Will see what my options are when I see her in October. Thanks Again Liz

[Revalation]

Used Incivek and didn't feel too good the the entire 12 weeks.

Had some rash that was treated and didn't last long.

Did not have any bathroom issues.

Reva

[1swimmer]

I chose the Vic because I hate rashes. I was worried about working and having bathroom issues too.

What I don't like about the Vic, is the sleep problems. Having to wake up to eat and pop pills. And, for 6 mos. At EOT I look forward to sleep! Oh, and SVR.

Good luck with your choice.

[pooh55811]

The SVR rates are high for previous relapsers so you have a good chance for SVR.

Both drugs have good SVR rates.

Peg and Riba cause anemia and the Protease Inhibitors compound the anemia. Most of the data I have read states anemia is worse with Victrelis (and triple med Tx). On the other had, Incivek can cause more rash problems. (SOC causes rash too, but the Incivek compounds the rash and can, in rare instances, cause severe rash problems and systemic involvement.) Incivek also has the potential for anal problems.

You take Incivek for 12 weeks along with Peg and Riba. Then you stop Inc and continue with Peg Riba.

You do  a 4 week Peg and Riba lead in with Vic, then add Vic at week 5 and continue through Tx. So you take Vic longer than Inc.

I don't know which of the two drugs have worse side effects or if they sort of even out.

I was on Incivek. I had severe nausea but used Zofran for it and that worked well. I had some hemorrhoids (not bad really), some burning butt if the stools were loose, and some severe internal rectal pain, probably from fissures (caused by the loose stools). Once I figured out that I had to keep the stools very firm (with Loperimide), I had no more internal rectal pain. I got the rash at about week 10 or so and it has moved in lock, stock, and barrel. I did feel a lot better after finishing Inc but the peg and Riba have their own sides so I still had a lot of sides. Plus, my rash is a Riba rash so I still have it. (Just finished 48 weeks of Tx 3 weeks ago.) I use Hydroxyzine 50 mg every 6 hours for the rash and steroid topicals as needed.

There is no way to know which sides you will get or how severe they will be. Some people have few side effects and/or mild side effects. Some people have more side effects and/or more serious side effects.

Most of the Game Changer sides (anemia, neutropenia, low platelets, anal problems, rash, depression, nausea/vomiting) can be treated with prescription medications. Getting on top of those sides as soon as they appear is critical. They can snowball rapidly. The other sides, well, we just live with them. I mean, there is no treatment for fatigue, no energy, no motivation, brain fog, feeling like a wet noodle, etc. A person can take some measures to compensate for some of those untreatable sides.

I am 66 years old. I did 12 weeks of Peg, Inf, and Inc and then another 36 weeks of Peg and Riba. It was no picnic, but it was doable. I had problems before treatment, problems caused by the Hep C. I was also already very fatigued. The truth is, I feel better now than I did before Tx. Even during the summer, while I was still on meds, in some ways, I was feeling better than I did before Tx.

Best of luck with Tx.

[uncledudeness]

that's my story too. 48 weeks of SOC, clear at 12 weeks and relapsed 1 month after treatment. my doc said that INC was a bit stronger than VIC so i took his advice and started triple last week. i haven't seen the sx from INC yet. but we're all different. your doc should advise you on which will meet your needs. i'm stage 4 so i have to do the full 48. 24 weeks sounds like a deal to me...good luck