Hey guys........anyone doing or has done triple therapy with Teleprivir/Incivek? I was pretty sick last time I tx'd just on Peg/Riba and heard the third one makes you even sicker. I am terrified and have been acting a winmpy girl and been crying because I know all the crap I will have to endure AGAIN. That being said, also heard the SVR rate is awesome....worth losing my hair and god forbid the extra 50 lbs I gained after my last TX :P
I didn't do tx with the PIs so I can't be of much help. Just try not to be too scared. I'm a wimpy girl too and I'd to have to do it but the SVR rates are just fabulous. Lots of folks will chime in I just wanted to say hi!
hi - i am on week 47 of triple therapy with incivek. i was undetected since week four, but had to do 48 weeks because if cirrhosis. most of here are either on incivek or victrelis. if you are going to go the incivek route i would recommend getting a dermatologist on board prior to treatment. many of us have had the rash
It helps to know the what the studies say about the side effects so you can evaluate whether they are likely to happen to you. I personally did not experience the rash, diarrhoea or extensive nausea that is associated with Incivek but there are those few who have. It is important to note that the Incivek side effects are manageable and not everyone gets them.
So it helps to read about both meds: Incivek (Teleprevir) and Victrelis (Boceprevir). The differ in side effect profiles, treatment duration and dosing protocols.
In my case I treated before and I was only a partial responder. That means I barely managed the two log drop when I was treating and that was it. That means I did not feel very lucky about one med compared to the other.
The difference in my case is with Victrelis you have a four week lead in where you just take the Peg and Riba and then you start the PI. With the Incivek you start the Peg, Riba and the PI all at the same time.
Mainly I relied on my doctor but the fact that I did not respond to Interferon and Riba the last time is a factor that helped me decide which med to treat with.
So in your case you might want to decide which factors are the most important in helping you attain SVR. If treatment adherence due to side effects is something you are concerned about then you might want to mention that to your doctor.
Sorry if this sounds preachy but I am a little disappointed in some of the doctors who treat with Incivek and do not know how to manage the side effects or teach the patient about what to expect. I will say it is unlikely you will gain weight on the Incivek.
Quite honestly I encourage you to read about both meds so you can make an informed choice.
Thanks all for the response!!!! Words of encouragement are always incentive for me :) I am a relapser and sides are sides I guess.....I went through hell the first time(I was one of the "lucky" few who get most sides and fairly severe....just not the anemia last time.....) but will rather lose a year of my life to sides than die early :) Again Thanks all!!!!
Sorry to hear you got so many sides last time. Hopefully this time you will get fewer side effects.
I did Incivek and am on week 48 now. Did my last injection last night. It certainly was no picnic, but it was doable. I think my experiience would not have been as bad as it was if my docs had been on top of the side effects and addressed them instead of ignoring them until I was very sick. One the side effects were under control, Tx was not bad. I actually have felt pretty good since June or so.
So my tip of the day is to get on top of the side effects immediately. They can and do snow ball out of control. My opinion is that one needs to be proactive and treat the sides aggressively if they appear. Many docs don't seem to get this or have bnot figured it out yet. We cannot do much about fatigue, malaise, flu like symptoms, and brain fog (other than to adapt to them). But something can be done for the worst side effects and something should be done about them.
Here is how I would handle them:
Rash and itching: Unless it is minor and is not bothering you, if you get a rash, get precriptions for stronger antihistamines like Hydroxyzine (I use 50 mg every 6 hours), fluocinonide ointment, and clobetesol soln. I found the over the counter creams and Benadryl to be totally useless. Get on top of any rash immediately. A huge number of the treating docs seem to have been asleep during the lecture on treating side effects, especially rash. People have had to quit triple treatment because their doctors had no clue what to order and/or dilly dallied around for several days doing nothing. If you have to, get assertive. Your treatment success may depend on it. If the rash is bad, see a dermatologist on an urgent basis.
Nausea and/or Vomiting: I used Zofran 8 mg every 8 hours. It worked perfectly once I got it. That nausea will snow ball very quickly and, if not treated, can make a person quite ill.
Anal/Rectal Problems: Keep the area very clean with Huggies baby wipes. Shower or sitz bath as needed. Xylocaine with Hydrocortisone cream (prescription) for burning and external pain. Prep H supp. for hemorrhoids. Prep H cream for external hemorrhoids. If you get the severe internal pain, then something like Anusol supp. would help (prescription). Also, drink a lot of water and keep the stools quite firm. It sounds counter-intuitive, but if the stools get soft or loose the butt problems escalate. I kept mine firm with Loperimide as needed and as long as they stay firm, I did not get the severe internal pain. Baneal cream or lotion has been reccommended as has Butt Balm, A&D, and others. A lot of people do not get the anal/rectal problems. Hopefully you will not.
Severe Anemia: Possible Riba reduction, Procrit or Epogen injections, Transfusions.
Low platelets: Promacta
Severe eye pain or any loss of vision (partial or total) go to the ER immediately.
Depression: Interferon can cause depression. If one gets depressed then it would be wise to see a psychiatrist on an urgent basis.
Aches and Pains: Tylenol in low doses
Brain Fog and memory problems: Leave your self notes. Develop a routine. Use alarm clocks, portable times, programmable watches to be sure the medications are taken on time. This is crucial with the new protease inhibitors because they have short half lives (and resistant strains can quickly emerge).
I am sure I have forgotten a few things.
You may not get any of these side effects or maybe only 1 or 2 and maybe mild instead of severe. But a person needs to be prepared and needs to know that being assertive in getting side effect relief is crucial.
Incivek is taken 3 months only and that is a plus.
Since you are a Relapser, you have an excellent chance of attaining SVR.
You have gotten very good information so far. I completed treatment (24 weeks) two weeks ago. Without a doubt the first 12 weeks with incivek were the worse but I was UND at weeks 4, 12, and 24. Such a good feeling. Please don't let fear, of all things, keep you from treating. Just make sure you listen to all of the wise advice you have been given here, and be prepared ahead of time for the major sx.
If I had to do it all over again I would be coming home from my first appt with a bunch of prescription slips for the rash, nausea, etc. That way I could just go and get them filled as needed. I would also be taking weekly CBCs from the get go to keep an eye on the anemia. I almost had to quit treatment due to the anemia getting out of control to fast. Need to get clear on what your insurance will or wont pay for and how long it takes to get the scripts filled specially with the procrit. My procrit had to be pre approved each time I got it filled. Best wishes on your treatment. I am almost 5 months post treatment with incivek. Did 48 weeks total and so far UND. It was totally worth it!
I recognized your name, I was doing tx back in 2007.
Can't really add anything about the new treatment as a geno 2 but I can tell you that the last thing I wanted to do was tx~ again. However when I found the virus was rapidly attacking my liver post transplant, I dove right in.
Now, I'm relieved it's over and so far, I'm still undetected.
It's all about having a healthy liver. Keep your eye on the goal.
The funny thing is: I know a couple people from my Home HCV Support Group, who had terrible side effects with just the Interferon/Riba treatment, but now that they are treating with the Triple (and Victrelis), they are experincing less sides, the second time around.
I think it's good to go in with a healthy and
positive attitude, and treat your bad side effects as they pop up, etc. The anemia was the worst thing for me, with the Victrelis Triple Tx.
I know what you mean. I noticed the same thing when I was going to group. I am not sure if it is because those who have treated before automatically assumed treatment would be horrible so they had no different expectations or what. Plus another thing - in that particular group is that all four people who stopped treatment (for whatever reason) were treatment naive. I'm not sure the stage of fibrosis of each though - or even if any kind of meaningful conclusion could be drawn from that.
Good luck on the restart. I have found the triple harder than SOC. I have also found PegIntron harder than Pegasys. I too gained after SOC - forty pounds for me, but I lost most of it before I started the triple. One really good thing about the triple is it seems to have made BMI not such an issue. It was a negative predictor with SOC but patients with a higher BMI seem to be very successful on triple.
I did 48 weeks, 44 with Victrelis. IT is my understanding that the weight gain after triple is similar to the gain after SOC. I am trying to take precautions but you know how that goes.... I completed the 48 weeks 3 weeks ago.
Note to pooh -- WAY TO GO. Glad I caught this thread and that you have done the LAST SHOT FOREVER of interferon. Good work, my friend.
I have many sides, but it is manageable..I also went through 48 weeks in 2007 and relapsed...seems similar to last time except maybe the beginning 12 weeks with incivek..Currently on week 22 of 48...the drive to live trumps side effects..good luck to you...folks here are very knowledgeable and kind!
my sides were really tough...bad rash...anemia in the 8s...my burning a h.... was bad only the first 3 weeks..........i had to stop riba twice....once at week 4 for 10 days and once at week 8 for 5 days....was <43 at 4 weeks and und after that...had to stop tx from eye problems at 19 weeks...still svr....was on incivek for 11 weeks till i was falling on my face...i had help 24/7....thats how i made it ....i came real close to being pulled off tx a few times.................here are my mistakes.......i should have learned about low hgb before tx.....when my np called the first time my hgb tanked she asked me if i was ok...i answered sarcastically "great!"...a big mistake....that was all i could get out of my mouth without passing out....i should have started procrit sooner then i did...i should have reduced my riba sooner then i did....i should have gotten a humidifier right off the bat for the coughing...zofran worked great for the gagging.....drink lots of water...wash your cloths and bedding in plan water...only use cotton or silk.....no dryer sheets....your symptoms may not be bad at all.....lots of folks can work and exercise throughout tx....get a laptop computer...do cbcs once or twice a week.....ask questions here...good luck the triple works great!...billy
Hello seems to me we were in the same boat. I have done 84 weeks total of Interferon/Ribaviren. I had 6 mos. break and then went on triple therapy with Incevik 4 weeks in I was NEGATIVE and still NEGATIVE. I just finished 9 weeks ago.
I do not know if you have cirrhosis if so you need 48 weeks if not 24. I know how you feel about restarting but it will be worth it. Be STRONG !!!
boceprivirGal and idyllic have interesting points about patients that have not treated before being unprepared. from reading the experiences of folks on this board it seems that those who are not prepared for the side effects are the ones that drop out. since you have experience with interferon and ribavirin, you know what to expect. the skin issues and hemolytic anemia may be a little worse. the trade off is worth it because hopefully you will never have to treat again
the previous poster stated that if you have cirrhosis you will need 48 weeks. that is true, i am in week 48 and am experiencing cirrhosis. also if the virus is detected at 4 weeks and undetected at 12 weeks, the recommendation is 48 weeks.
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