Hep C Discussion Forum

sandypsych · Veteran Member

RE: had to stop Incivek.

Isiscat2011 · Guru

In the clinical trials 6% of patients had Incivek discontinued because of rash so these problems are definitely not uncommon.

Man, the idea of adding another protease inhibitor to the mix at this stage is a tough one. This tx can be so brutal and at first blush the idea seems downright cruel! My heart goes out to you and your husband.

I do think that, at least in theory, having Victralis as another tool to use in this tx could be valuable for some people, especially where the primary offender is the severe rash, and assuming the other side effects were manageable. It would not seem likely to work well for discontinuations caused by severe blood problems, or other idiosyncratic side effects, otoh.

One would have to weigh the degree to which adding Victralis would be likely to increase SVR (are we talking a possible 10% increase or can a number even be realistically assigned) against the possible side effects and length of tx.

The protocol at this point is to wait 7 days to see if the rash improves (according to the 2012 UK Guidelines I just read). In the meantime, I would definitely have another viral load check to give you an idea of where that stands. No real reason that I can think of to wait for week 12 to determine viral load, and the PCR/RNA lab results usually take about a week.

P.S. Way to go, Ordinary. confuse And, the suggestion for a dermatologist to have a look at this is an excellent one.

-- Edited by Isiscat2011 on Monday 12th of March 2012 09:32:15 PM

ordinary · Member

Hi Sandy

I'm sorry that you and your husband are going through this. I was almost in an identical position last October. I was on the triple therapy with incevik and diagnosed with early DRESS. Was taken off incevik at 8 weeks and, since I had cleared the virus, was started on the victrelis 2 weeks later. After 32 weeks, I am still undetectable with 16 weeks to go.

In my experience, the victrelis has been a way to continue treatment. There's some rash from the riba but nothing like the incevik. At one point, there were 4 drs. looking at my poor body.

One thing: The lesions from the incevik linger. One actually turned out to be a squamous cell and had to be scraped out. Try to follow up with your dermatologist.

Good Luck

ordinary

sandypsych · Veteran Member

That is a thought. But I think right now we are hopeful that the Interferon/Riba will finish this off. Besides, I think if I suggested one more drug to hubby he would go nuts!!! :)

LanaiSurferGirl · Senior Member

Has the doc considered the boceprevir instead? It isnt too late to start on that. It might be a better alternative to incivik.

Cinnamon Girl · Guru

Hi there sandypsych, just want to add my support and well wishes to you and your hubby, it must have been a very scary experience and you did absolutely the right thing.

Now he`s off the Incivek he should start to recover very soon. No more eating fat - what a relief that must be too! smile

You are doing a really great job, it makes so much difference having such a caring and supportive partner when on tx, and I wish him the very best of luck.

Take care, both of you, love from Jill xx

news · Guru

I am relieved to hear you guys are both OK, and ready to relax and let the healing begin. What a brave and determined pair you are. This can still work out just as you hoped it would before all the discomfort started. But right now the important thing is to stop those skin reactions and get back to tolerable.

Tell the ol' man he's a hero for working so hard. And you are too.

Alan

Isiscat2011 · Guru

I'm so glad that you and your husband are feeling a bit better now. And, those "perfect storms" are what doctors can see that we cannot. The diabetes sure didn't help things. Be well. confuse

sandypsych · Veteran Member

I'm actually glad we called the dr. I knew in my heart of hearts that this was quickly going poorly, so it was a relieft to hear that confirmed by his doctor. I appreciate the subtle kick in the pants to do it!! Now we can just focus on some good nutrition, and sleep (without waking every dang 8 hours and eating ice cream) so that he can begin to recover.

sandypsych · Veteran Member

Yes, we are still doing the riba and interferon. Just not the incivek. I think the combo of high fat diet and diabetes doesn't help! Sort of the 'perfect storm' if you will.

I'm hopeful that if his viral load is either undetected or low enough that maybe the riba and interferon will kick the rest out. I spoke with the dr (though it was pretty obvious he had other things to do), but luckily his sister is an RN and very knowledgeable about diabetes. So I'm feeling okay. Frankly, he was surprisingly relieved to be done and was happy to eat a chicken salad and veggies for lunch. It was nice not to think about fat for a change!

Thanks for the kind words, concern and encouragement! It gives me hope to hear that so many have been able to beat this.

Isiscat2011 · Guru

Hi Sandpsych: I'm probably the second to the last person you want to hear from since I suggested you call his doctor (with the first person being his doctor).

The first thing you should know is that your husband's reaction to these drugs was not within your or his control. He fell into the reported 4% of people who will develop severe skin reactions. The severe skin reactions can progress to life threatening disorders known as DRESS and SJS. Topical creams, oatmeal baths, and antihistamines will not stop the severe reactions; only the immune system can do that. And, the combination of these drugs wreaks havoc on the immune system.

The reason you are wishing you had not called his doctor is because you think he would have improved if you had just waited. This seems unlikely given the extent and duration of the symptoms. Equally likely, continuing to ingest the toxic substances would have resulted in progression from the 4% to the additional 1% for whom the skin disorders become life threatening, requiring hospitalization and sometimes resulting in life long suffering or death. I'm sure his doctor was thinking that these risks are just not acceptable. The Incivek labeling discloses this information and unequivocally directs Incivek discontinuation where the symptoms progress to what you described.

The good news is that his body can now begin to detox from the Incivek which should lead to improvement of the rash within a relatively short period of time. And, according to the clinical trial results the overall SVR rates with only 8 weeks of Incivek are still high at 72% for those completing the remainder of the tx.

I wouldn't focus an inordinate amount of attention on the clinical trial statistics, however, as they are dependent on many, many factors. The point is he still has a good chance and the odds don't mean much anyway when it comes to individuals.

Things will get better now, and you have prevented something much worse, which is what your doctor saw as likely to happen if he had continued.

news · Guru

Is he still able to take his ribavirin and weekly pegasys injection, or did they stop treatment altogether? I ask because there are a few folks doing that around here, and they continue to test"undetectable" in subsequent weeks. And there is at least one that got to about week 10 and had to quit altogether, but continues to test undetectable.

Is he able to get any hands on doctor care this weekend? Isn't it ironic that things like this so often occur when the pro's are not available for some reason?

I will be checking back frequently, but I have to go run an errand in a few minutes for about an hour or two. Please post any news.

Alan

sandypsych · Veteran Member

At week 4 he was at 53. Down from over a million, so they were thrilled. His rash is full body, with swelling of his lower extremeties and short of breath. This is compounded because he is a type 1 diabetic, so swelling in the feet/legs is bad for a lot of reasons. I'm hoping that eight full weeks was enough to kick the virus out. The dr. felt that getting through eight weeks was important, that the next four were just really insurance.

Shaun · Senior Member

My RN told me that in the trials they were running some people with bad side effects ten weeks on Incivek and still seeeing very good results. Just keep it going and see where he is at next VL test.

Where was your hubby at 4 week VL test?

news · Guru

There are several troopers around here that had to stop Incivek early. It is nasty stuff. I expect they will check in soon with encouraging words, because they are all doing fine. Alan

sandypsych · Veteran Member

Talked to the Dr. today after the rash spread throughout Hubby's body, and legs are swollen and weeping slightly, hot to the touch. She stopped in the Incivek. We are a day short of nine weeks. I'm so worried that now it won't work, having regrets that I even called them. Any one know the success rate of stopping after nine weeks? He was down to a viral count of 53 at week 4, and they weren't planning on another viral load until week 12.

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