Are side effects different with Boceprevir?

Are the usual side effects magnified, less, or the same but with new ones when treating with peg, ribi and adding Bocepriver?  And is tx really worth the sides? I mean life with HepC has been no different than life without it-  but side effects seem Hellish, and severely life-quality-diminishing. Why bother?

[virgocharm]

hi ram  i am in the boc trial. 5 weeks now. sx have been,well, not really had none. except after shot, next fever, very light headache. some fatigue. comes and go. i drink 90 oz water a day. thats the key. REST REST REST.  HAVE NOT MISSED A DAY OF WORK

[Rockerforlife]

im into wk 5 also....NO SIDES,,,i work 50 hours a week at heavy work.

[Rockerforlife]

First shot was a bit rough tho...just cold shivers and hot flashes for a day or two...GO FOR IT

[einsteinus]

Started week 2 of boceprevir  already on Peg + Ribvarin for 1 mo now ( 6 weeks  total) viral load went from 7MIL to 33,000 even before I started the BOCEP. The worst side effect so far has been the metalic taiste other then that business as usual with flu like symptons.  I have geno 1a,1b and look forward to not having HVC in the very near future it's all worth it work 40+ per week have not missed any work.  You can a little dizzy on this stuff and the best thing to get rid of the taiste is berries citrus and lots of juice and water.  GO FOR IT your life depends on it!

[ram921]

Yeah, thanks. This is a resurrection of an old thread. I'm now on week four of SOC and start Boce this Wednesday. I'm not twisted about the sides, it's all been perfectly tolerable and mild, and I've kept working, too. There's NO reason to not treat.

[can-do-man]

Just finished week 8, I know i'm getting the real thing. NO additional sx's and yes that taste can be nasty, but i don't get it all the time....... Best of luck to both of you

[Rockerforlife]

I sprinkle the boceprevir on toast...with a small dab of butter...love it

[Keith_2008]

I have been taking Boceprevir for 2 weeks now and I don't have any major side effects from the Boceprevir itself. I do believe that I am actually getting the Boceprevir also and not the placebo. I do have a slight metallic taste in my mouth. I get far worse side effects from the Interferon and the Ribavirin.

Rockerforlife is more the exception to the rule than the norm (I wish he understood this). He does not seem to have any major side effects and to be quite frank with you that may not always be a good thing. Some Doctors tell me if you can't feel the side effects that the drugs may not be working. In other words the people with the least effects are probably more likely to fail. So as much as we don't want to have any major side effects there can be issues with that. My Doctor explained it to me like this. If you get a cold virus it's not the virus that makes you feel sick. It's your body responding to the virus that makes you feel sick. So if your body was not responding to a virus threat you will not feel anything, which is probably why so many Hep C people have no symptoms (until their liver is about to fail) because the body is not reacting to the virus.

Another issue is at what stage has the Hep C has developed. I get the feeling that people who have not developed any major symptoms from the Hep C may in fact also not develop the severe side effects that others do. I think the medications amplify the symptoms of Hep C or at least that's the way it is in my situation. The worst conditions of the Hep C virus will be met with the worst side effects. Others can weigh in on this as this maybe a controversial subject.

Good luck to you!

[can-do-man]

As for the first part of your post i'm not sure how i feel about that. I've seen it both ways here many times. Little sides yet SVR and some little sides and relapse and the same with ones with major sides. My thoughts are every one handles everything in life different.

Like with a cold, for some it really kicks their butts yet others its just more of an annoyance.

You said.... The worst conditions of the Hep C virus will be met with the worst side effects.

Sorry don't agree with that, i was dx almost 4 years ago as stage 4 grade 2 yet i have mild sides.... BTW i was und with 2 weeks of boceprevir......... Best to you

[Keith_2008]

My research has led me to believe that people who are dealing with serious symptoms of Hep C prior to treatment are more likely to have worse side effects from medication than someone who little or no symptoms.The medications used to treat the Hep C will aggravate the symptoms you are experiencing prior to treatment and therefore you feel aggravated side effects. These are general terms and can vary from one person to another. There really are no set rules but in general terms I think this is an accurate statement.

Serious symptoms could include Fatigue, muscle aches, headaches and a long list of others.

I'm not sure what symptoms you were experiencing prior to treatment. It's one thing to say you have a screwed up liver. It's totally different to feel symptoms from it. There are many people with a bad liver who don't really know it because they are still not feeling the symptoms from it yet, but it will catch up to them eventually. Everyone will eventually feel symptoms from the Hep C. It just might take 20 or 30 years to get to that point. The people that I see quit treatment due to serious side effects from medication are the same people who were suffering from serious symptoms prior to the treatment. The person who was not really suffering serious symptoms prior to treatment was not as likely to suffer from serious side effects from medication because the symptoms weren't their to begin with. I don't know if this makes sense to you but it does to me and it is what my Doctors have conveyed to me.

[ram921]

Jeez, I'd hate to think that my mild sides mean that I'm not getting cured.  Or start hoping for horrible side effects because it means that I AM getting cured.  That's just way too much pain and anxiety on top of  everything else.  I, too, have heard from my doctors that dramatic sides are somewhat relative to how advanced the disease and liver damage is, as well as age of the patient and other health factors. I'm mild to no symptoms pre tx, gen 1-VL 700k, Stage/level 1, mid forties and otherwise fit. Don't smoke, don't drink, etc. Total dork. Maybe that has something to do with my good fortune so far re: mild side effects?  One can only hope it continues. Truly, if it hadn't been for the Boce trial, I probably would have waited to treat if only SOC was available.

[can-do-man]

Before tx i was pretty active, so i don't know. Like i said i've been coming here for over 3 years and have seem many both ways.

One would think that hepatologists could easy pick up on this and it would become wide spread knowledge. If your a geno1 and are having little sxs then with the odds low anyway why go on?

I still go back to what might be bad sxs for one maybe isn't so bad for another.

[Deb_c430]

Ram I know about this tx,     but tend to agree with can do, every txt is different, we all have our own body chemestries,     it is really hard to say this will happen, it may not.    or that won't, because it may.

Like all things, I think it just depends on your body and you.

Good luck Ram

[Marcia2202]

This thing is totally unpredictable. I am a vegetarian health nut and don't drink, smoke or any of it. I've had a hell of a time with tx... The last two weeks I've been feeling great. Now I'm starting to go down again. No logic in it at all, I would say. And on top of it, my bloods have been fine. When my hgb was at it's lowest so far (just below 10), I was feeling the best. All through tx, I have continued eating healthy, organic food and use only organic products on skin, hair and in household products.

The body reacts differently to tx and I don't think it is at all possible to rationalize any of it.

That is just my experience...

I hope the minor sides will stay for you!

[Trinity4]

" I, too, have heard from my doctors that dramatic sides are somewhat relative to how advanced the disease and liver damage is, as well as age of the patient and other health factors. I'm mild to no symptoms pre tx, gen 1-VL 700k, Stage/level 1, mid forties and otherwise fit. Don't smoke, don't drink, etc."  
--------------------------------------------------------------------------------------------------------------------------------
Disagree totally with that statement.  Stage 3, 56 years old, light smoker.  Tx has not been debilitating to me.  I've had my days, but I manage fine. UND somewhere around wk 15.  Will be txing 72 wks and have worked since starting tx.  Attitude has alot to do with how we cope with side effects. People can have identical side effects and some end up bed ridden and others keep going.  Very individual treatment based on may factors including tolerance.
Trinity

[ram921]

Right. I guess there's no point in arguing. It seems everyone that's asked has something different to say. None of it really matters anyway, because it doesn't change anything...it's just mental masturbation. Or in these cases, something to do with our fingers other than scratch injection sites. I better get back to work...Thanks

[68warmydoc]

Hello there, I was just reading some of these old posts and my favorite one was the last one in which you wrote, I'm actually still giggling about it because it's so true...here we all sit scratching those damn injection sites lol. Well, truth be told...that should be the one side effect we all have in common and the fact we all hope that the weekly poke wasn't done in vain. There ya go ...problem solved.

[GreatBird]

Ha. And that's one side I haven't had. No itchy injection sites. Blotchy red, yes, but not itching.

BTW--I was unsymptomatic with the hepC but have had sides with the tx.

[68warmydoc]

One more thing to consider before starting any treatment. Especially this investigational study..do your research and learn everything you can from each individual drugs side effects. I just learned today that there is as possibility of brain damage with the ribivarin and though it's used in patients with HIV also it is noted as HIV dementia. It doesn't seem like Doctors are taking into consideration that the medication is causing this severe side effect now that it is even presenting in patients with HCV. I have been taking the medication for 6 weeks and my levels are almost undetectable. Now that I've found out this information I am considering them dropping me from the program and use traditional methods"herbal" to finish the treatment. If it works it woks ...if not then maybe it'll atleast be manageable. If I had of known this information ahead of time I would've never started the treatment and just waited till they worked the kinks out of it. LOL.What ever any one's decision is they have to know all the facts and possibilities. Weighed out you will know what the best decision is. I think that if the numbers are "high" atleast take the treatment to lower it and manage it the rest  of the way with other remedies. I don't think the ribivarin should be taken for such a long period of time. Good luck with whatever your choice is.

[rockymoe]

I just started the boceprevir treatment I am on the first week of the Peg and Ribavirin and having the normal side effects. They don't start boceprevir unless you drop a log by week for so i will let you know. They did tell me that more people tend to get anemic on it.
This is like my 8th treatment and I'm really hoping this is the one.

[willbb]

I see from some previous threads that you have tx. multiple times and once had a relapse with Tela..I would be very interested in your results this time  and hope you keep us updated,as there are some of us here waiting to re-treat after a failed attempt with a P.I.


The best of luck to you  this time!
Will

[willbb]

BTW..this is a very old thread...so it may be helpful to you and us if you could start your own new thread ..

Thx.
Will

[willbb]

also meant to add...your post would be seen by more people on the Hepc forum on the other side

Will

[U2GF]

8 treatments! I hope this one works for u!

[Jenn2589]

well, i felt alot of side effects; fatigue, weight loss, hair loss, severe flu symptoms, taste change, memory loss, and yet i still failed after a year and 3 months

[Marcia2202]

I received an email notice that this thread has been moved to the Hep B forum.

It should be on the Hep C forum, as this concerns Hepatitis C treatment and not Hepatitis B treatment.

Just saying.... :-)

[Emily_MHModerator]

Thanks, Marcia!  

Em