Hep C Discussion Forum

greenqueen · Guru

RE: Does this get better?

EasternOntarioGirl · Member

Whoa! Its been a bit since I've been here. I had asked if it got better. Well at this end it has alot!! aww qsx1250fa, if you are still checking in, Victrelis doesn't need the fat intake. If you have new info I sure would like to see it. We need all the ammo we can get against this illness, not against each other. In terms of exercise you are right hrsetrdr. David has been trying to do a bit more, but weight training will have to wait. wink We now wear the same size pants!!!! lol

He is going for his 4wk VL test next week so we are pretty excited. I'm doing all right and thank you all for the encouragement and info you all share.

Sometimes the road is a little rough to "Adult-essence" which requires a significant change in ones basic orientation to the self and to his or her surroundings.

Hope everyone has a great day today!

greenqueen · Guru

Thanks Dave for such wise words

Michael has explained that he's on a different regime and his doctor is an eminent person in the field of research with the new drugs. I've had a look at some of his work and it's very impressive.

I know that people here were trying to help and were worried that he may have been given the wrong advice for his tx, as this has been known to happen. However, this is not the case here.

Dave is spot on – we all know how these drugs affect us mentally and how quickly disagreements can escalate out of control.

We do not endorse patients going against their doctor's advice and I think it's very interesting to see how Michael’s tx regime progresses and am asking him to reconsider leaving the forum. If we didn't have doctors like this, we would not be advancing so well in the search for more effective treatment.

Steff xx

davesf · Senior Member

Alright now...everyone put down the RIBA and step away from the bottle.

Michael, you are welcome on this forum anytime as far as I am concerned. We are family and family don't always git along perfectly all the time but we get by.

In business they teach us that the best solutions typically come from groups where there is some friction as opposed to ones where everbody gets along.

The key is knowing where productive conflict stops and begins to be unproductive. Methinks we crossed that line on this thread a little bit.

No surprises with a bunch of warrior types suffering from depression, aggression, discomfort, and brain fog stupidity...on a good day. confuse

But if any of my family really needs to vent you can feel free to PM me. I'd much rather you do it do me over email than inadvertently take it out on your loved ones or coworkers.

All the Best, Dave

Cinnamon Girl · Guru

Let`s cool it now can we folks? I`m sorry you feel unwelcome here, Michael, and of course you need to follow your doctor`s instructions, but people were only trying to be helpful and you responded in a very defensive way.

You don`t need to go, let`s just all let this drop now and get on with being supportive to each other!

All best wishes, Jill xx

gsx1250fa · Veteran Member

kiwi wrote:
i kinda agree with the poster that wants to know, why you are here. ? asking for opinions, and then blatantly dissing them saying they are only patients on treatment, not some specialist doctor treating hepc...
whats the point. ? just continue listening to your doctor then.
good luck

Well for "Kiwi the Curious" and "nohcvforme the inquisitive" I ORIGINALLY had some situations pop up on a Sunday (numbness in hands and losing train of thought in middle conversation/borderline passing out) so I registered on this forum and posted my situation. In another thread I mentioned fat intake with victrelis (as my Doc told me to) and that became a new topic (or war against me). Now it appears my tx (no lead in) as PRESCRIBED by my doctor (Dr. Eric Lawitz who you can thank for a prominent role in the pre FDA approval trials/studies/reports of the very drugs you are taking) is in question. YOU ARE ABSOLUTELY CORRECT....I WILL KEEP LISTENING TO MY DOCTOR. THIS IS MY LAST POST ON THIS FORUM AND I'M SURE SOME OF YOU WILL BE HAPPY FOR THIS. I WISH EVERYBODY HERE THE BEST AND NOW GOOD BYE!

kiwi · Senior Member

i kinda agree with the poster that wants to know, why you are here. ? asking for opinions, and then blatantly dissing them saying they are only patients on treatment, not some specialist doctor treating hepc...

whats the point. ? just continue listening to your doctor then.

good luck

gsx1250fa · Veteran Member

mallani wrote:
Hi Michael, Many of us are on our 3rd. or 4th. treatment attempt, so you are not unusual. I am worried you might have the wrong drug. Fat with meds., no 4 week leadin are all recommended for Incivik. For Victrelis, a 4 week leadin with Peg. and Riba. are mandatory. It is vital to know your VL at beginning, at 4 weeks, and at 8 weeks ( after 4 weeks of Victrelis). You are looking for a VL drop of 2 logs at 4 weeks and undet. at 8 weeks to be an EVR. If not undet. by week 12, your chances of SVR are not great. These protocols for Victrelis are published by Merck, and have been the recommendations of ALL of the Victrelis trials. You can easily check this with an internet search. A very early trial was done using Victrelis without a leadin, and the SVR rates were poor.
If you are definitely on Victrelis, please ask your doctor why he is not following worldwide protocols. Yes, I am a doctor, specialising in liver-pancreas imaging!

From what I understand (and asked) no lead-in (for me) has to do with how my viral load reacts to the interferon/riba (which they already know from my 2 prior tx) in conjunction with the fact that I have already been exposed to Boceprevir (not sure of the amount) on my first treatment (more of a guinea pig clinical trial) over 2 yrs ago *BEFORE* it was approved by the FDA. Now... I'm not a liver disease specialist with a concentration in Hep C treatment/cure (and with all due respect...neither are you) but the institution I go to and Dr. Eric J Lawitz (look him up) played a large roll in the *PRE-FDA approved* findings/results/reports for Boceprevir/incivek through extensive inpatient/outpatient clinical trials. I guess I was one of the gueane pigs (pre-FDA approval tests). With that being said I am following his outline (NO Lead In) with this 3rd treatment. Wouldn't you?

nohcvforme · Veteran Member

I guess I'm just curious as to why you asked random forum members for any opinions/advice if you have total confidence in your doctor and were going to respond to any answers with an argument. Chip on shoulder.

mallani · Guru

Hi Michael, Many of us are on our 3rd. or 4th. treatment attempt, so you are not unusual. I am worried you might have the wrong drug. Fat with meds., no 4 week leadin are all recommended for Incivik. For Victrelis, a 4 week leadin with Peg. and Riba. are mandatory. It is vital to know your VL at beginning, at 4 weeks, and at 8 weeks ( after 4 weeks of Victrelis). You are looking for a VL drop of 2 logs at 4 weeks and undet. at 8 weeks to be an EVR. If not undet. by week 12, your chances of SVR are not great. These protocols for Victrelis are published by Merck, and have been the recommendations of ALL of the Victrelis trials. You can easily check this with an internet search. A very early trial was done using Victrelis without a leadin, and the SVR rates were poor.

If you are definitely on Victrelis, please ask your doctor why he is not following worldwide protocols. Yes, I am a doctor, specialising in liver-pancreas imaging!

alohaKim · Senior Member

gsx1250fa wrote:
Scout wrote:
gsx1250fa wrote:
It appears that some of our forum members have more credentials than the Doctor's specializing in this disease. My apologize if ya'll are actually Doctor's specialicing in the treatment/cure of liver disease who just so happen to have Hep C. I will follow my Doc's instructions. He is not a family practitioner....but the lead doctor at an institute specializing in the treatment/cure of HepC.
You have a right to be angry. The meds are tough and the tx is hard. We are only experts on our individual cases. Some of us have gone through this more than once. It's a dead serious deal. Hopefully experience breeds knowledge. No one is saying your doctor is up in the night. I've also been told that fat is a good catalyst for helping the drugs do their thing. Some drugs are fat soluble and hence obsorb better in a fatty environment. I also have a doctor who is an expert in the field, it's all she does. The 20 GRAM dictum is specific to Incivek. Food with some fat along with the other meds can't hurt. Do what your doctor says and hopefully you will be successful in your treatment. Once you get to the point that the fat can be reduced you'll feel better, believe us you will.
I apologize if I came across angry. This is my 3rd attempt over the last 2 yrs with treatment. I am following all directions/advise he gives. if he told me to stand on my head for 30 minutes a day as this would give the meds an edge...then I would do it. On your 3rd try at this it becomes a "give it all you got" type deal for me. I don't want to be on treatment for the rest of my life and not sure I will do tx again if this fails.

Yeah, you did come across pretty rude, and for no reason. I was just sharing with you some info that is clearly stated on the box of Victrelis, on each bottle, and also inside the info leaflet with the manufacturer's instructions. I thought maybe you didn't know. There are many doctors out there who aren't experts in the field who are prescribing these drugs, and sometimes folks end up with inaccurate information from them. Was just trying to look out for you. That's what we do on this forum. WE DON'T ATTACK people or criticize. Geez. Hope you feel better soon.

gsx1250fa · Veteran Member

Noooo....If for some reason my doctor (well known liver disease specialists) for whatever reason wants me to take high fat intake with my meds...and a non-doctor (hep C patient) is telling me I don't have to....well there is a huge problem. I appreciate your trying to help though. If you had terminal cancer and your "cancer specialists doctor" told you to take the medication a certain way and a "cancer patient" forum member told you "oh that's ok you don't have to take it that way"...Who's advise would you listen to? I'm not mad...but this is a serious disease and I believe the doctor, for whatever reason, knows what's best for my particular situation (which I'm on my 3rd tx attempt). We are hep c patients...not liver disease specialists.

-- Edited by gsx1250fa on Friday 13th of July 2012 03:37:56 AM

nohcvforme · Veteran Member

Ibuprofen and vitamin E thin the blood, so be careful with them if you start tending to bruise or bleed easily. Don't know if fish oil would do the same?

Phil G · Senior Member

Trudy, I spent a lot of time on the couch, apparently more than I realized. I was reading this post out loud the other day with a semi-impartial observer present (aka, my wife). Regarding the couch time, she said to tell you its par for the course, and it starts to get better when tx is over. I made it to work, but apparently not much else. Seems we all just get used to it, and it seems better or at least normal for us. Ditto on the water (lots of it), and got to eat (anything and all that he can). Exercise is great if he can. That fell off completely for me after a month. Just do what you can when you can.

JIme · Guru

Welcome!

Here's my two cents for what it's worth.

It was imortant for me to move around as much as possible while on triplte tx. (I was on telaprivir) And drink un-Godly amounts of water. I also took a multi vitamin, fish oil, and D-3 every day and I still do to.( check with your Dr about these before taking anything )

The main thing I would have done differently was to go on some lite anti-depressant. I didn't realize how stressed I was until I stopped.

When I read something that doesn't fit into the SOC that everyone else is doing, I wonder about it. I would check with your Dr and ask him why his advice differs from every other Dr. dispensing these meds so far.

Good luck and keep moving forward!

mallani · Guru

Michael, By all means take your meds with fat if you want to. Trusting your hepatologist is vital. I guess we were trying to say that the instructions for Victrelis do not mention fat, and most of us don't eat fat with the Victrelis. That is one of the advantages over Incivik.

You don't mention your VL before RX and did you have a 4 week VL done after the leadin to check your sensitivity to Interferon ? A 2 log drop after leadin is now thought to be a good indicator for SVR , even for patients with the CT and TT allele on Interleukin 28B.

Best wishes and fingers crossed for that 12w undet.

gsx1250fa · Veteran Member

news wrote:
That, my friend, is the real question. We have all taken a leap of faith. I hope we did the right thing. I have never done before, and hope to never do again, anything near as intense as this. The possibilities for long term effects are huge. And in your case with multiple trips it will be even more so. But in my case I just had to try it. Not going for it was out of the question. We'll see what happens

And UND congrats. If I am UND at week 12 (was right at 100 threshold week 8 and lowest it's ever been) I will continue full triple treatment for the entire 48 week schedule (36 more weeks). I hope my wife can put up with my "short temper" that long :)

news · Guru

That, my friend, is the real question. We have all taken a leap of faith. I hope we did the right thing. I have never done before, and hope to never do again, anything near as intense as this. The possibilities for long term effects are huge. And in your case with multiple trips it will be even more so. But in my case I just had to try it. Not going for it was out of the question. We'll see what happens

gsx1250fa · Veteran Member

In all reality and IMHO I believe anybody with multiple treatment attempts starts to wonder how much abuse the human body can absorb with, in all reality, unknown long term side effects. My liver never had "phantom pains" until after the first treatment attempt. Are the benefits of this cure going to outweigh the long term side effects of multiple treatments. Kind of a crap shoot if you ask me.

gsx1250fa · Veteran Member

Scout wrote:
gsx1250fa wrote:
It appears that some of our forum members have more credentials than the Doctor's specializing in this disease. My apologize if ya'll are actually Doctor's specialicing in the treatment/cure of liver disease who just so happen to have Hep C. I will follow my Doc's instructions. He is not a family practitioner....but the lead doctor at an institute specializing in the treatment/cure of HepC.
You have a right to be angry. The meds are tough and the tx is hard. We are only experts on our individual cases. Some of us have gone through this more than once. It's a dead serious deal. Hopefully experience breeds knowledge. No one is saying your doctor is up in the night. I've also been told that fat is a good catalyst for helping the drugs do their thing. Some drugs are fat soluble and hence obsorb better in a fatty environment. I also have a doctor who is an expert in the field, it's all she does. The 20 GRAM dictum is specific to Incivek. Food with some fat along with the other meds can't hurt. Do what your doctor says and hopefully you will be successful in your treatment. Once you get to the point that the fat can be reduced you'll feel better, believe us you will.

I apologize if I came across angry. This is my 3rd attempt over the last 2 yrs with treatment. I am following all directions/advise he gives. if he told me to stand on my head for 30 minutes a day as this would give the meds an edge...then I would do it. On your 3rd try at this it becomes a "give it all you got" type deal for me. I don't want to be on treatment for the rest of my life and not sure I will do tx again if this fails.

Scout · Senior Member

gsx1250fa wrote:
It appears that some of our forum members have more credentials than the Doctor's specializing in this disease. My apologize if ya'll are actually Doctor's specialicing in the treatment/cure of liver disease who just so happen to have Hep C. I will follow my Doc's instructions. He is not a family practitioner....but the lead doctor at an institute specializing in the treatment/cure of HepC.

You have a right to be angry. The meds are tough and the tx is hard. We are only experts on our individual cases. Some of us have gone through this more than once. It's a dead serious deal. Hopefully experience breeds knowledge. No one is saying your doctor is up in the night. I've also been told that fat is a good catalyst for helping the drugs do their thing. Some drugs are fat soluble and hence obsorb better in a fatty environment. I also have a doctor who is an expert in the field, it's all she does. The 20 GRAM dictum is specific to Incivek. Food with some fat along with the other meds can't hurt. Do what your doctor says and hopefully you will be successful in your treatment. Once you get to the point that the fat can be reduced you'll feel better, believe us you will.

davesf · Senior Member

Michael, I understand your viewpoint but I can see where these other folks are coming from as well. Can you help us out? Can you ask your doctor why his instructions are different from the ones that come with the medicine and are posted on the manufacturer website? If his expertise puts him further ahead of the standard recommendations from the trial studies, trust me, everyone here will be very eager to find out why. Please be our advocate and find out for us.

wilsondog · Senior Member

You might want to ask for clarification from your Doc on the info sheet they are providing perhaps there was some confusion on the part of whomever typed it up. In all honesty, it's true that much of the info here is based on 1st hand experience with meds the docs have been prescribing to patients for a very short period of time. We are guinea pigs (not to dismiss the fat intake/ absorption question which should be directed towards the pharmisutical co.) That said, I would talk to your doc but also be open to what's being said here because it's based on reality, not a handful of trial results!

gsx1250fa · Veteran Member

It appears that some of our forum members have more credentials than the Doctor's specializing in this disease. My apologize if ya'll are actually Doctor's specialicing in the treatment/cure of liver disease who just so happen to have Hep C. I will follow my Doc's instructions. He is not a family practitioner....but the lead doctor at an institute specializing in the treatment/cure of HepC.

Scout · Senior Member

testy. It gets better. I've got more knowledge from this forum than my doctor has time to impart in a 15 minute visit. 20 grams is an Incevik thing. I've been there. The weight dropped when the fat was removed as a well as my degree of energy and mood improved. Not 100 percent but better. I'm 5 weeks from finishing treatment.

mallani · Guru

I agree with Kim. My instruction sheet states Victrelis should be swallowed whole with water, with food ( e.g. a light meal or snack). There is no mention of fat. I have my capsules with a banana, and have had no problems.

gsx1250fa · Veteran Member

Thanks. I was at 1.3 mil before tx and at 100 (barely above cut-off) week 8. No lead in to VIC. Full trip tx from day 1 this time. At my 3rd tx my body seems to acclimate to the interferon within a shorter time. I am not sure of week 4 (though they did all lab work) as I was mandatory 8 weeks regardless and supposed to be 99 or less at week 8. At 100 they decided to keep me on trip tx for at least 4 more weeks. I will have to be UND at week 12 to continue. Still in "question mark land" till the end of July. I'm handling the treatment fairly well I suppose. thks :)

-- Edited by gsx1250fa on Tuesday 10th of July 2012 05:08:57 PM

-- Edited by gsx1250fa on Tuesday 10th of July 2012 05:09:56 PM

gsx1250fa · Veteran Member

I will find out. I am not trying to be rude and am very happy for the people who are UND. For myself it appears my case is a "tougher" case than for some. Again I am on my 3rd treatment. When I did ask about the "fat intake" he said that studies have shown the particular med vic and even riba are more prone to attach to fat and absorb into your body. He is one of the leaders in the research/cure of Hep C. The institution I go to is also where clinical trials with the new drugs are taking place on us human "guienea pigs" with an inhouse facility and where Dr. Eric J Lawitz (Alamo Medical Research in San Antonio Tx.) oversees, documents and dictates the entire research/results process. Now I am not a Doctor, but I believe i am fortunate enough to have this facility 15 minutes from my house. Now...in a "tough case" like myself...if the doc tells me to intake the fat with my meds...there is a reason. Whether this is giving me a slight edge with the meds?...I will adhere to his advise. Anything to give a slight edge is worth it to me. I'm not trying to lose weight anyway, but atleast maintain...or ever gain a few pounds. So the fat intake isn't a problem for me. Dr. Lawitz is on the front line of this disease/cure. No disrespect intended to any members.

-- Edited by gsx1250fa on Tuesday 10th of July 2012 03:55:39 PM

-- Edited by gsx1250fa on Tuesday 10th of July 2012 03:59:10 PM

gsx1250fa · Veteran Member

mallani wrote:
I agree with Kim. My instruction sheet states Victrelis should be swallowed whole with water, with food ( e.g. a light meal or snack). There is no mention of fat. I have my capsules with a banana, and have had no problems.

It's all good....but who's advise would you follow? Random forum members....or the Doctor who has dedicated his life to the treatment/cure of this disease? :)

-- Edited by gsx1250fa on Tuesday 10th of July 2012 01:53:11 PM

gsx1250fa · Veteran Member

alohaKim wrote:
gsx1250fa wrote:
Workout (start out slow) and eat. Really any exercise program you can stick with. I restarted weight training shortly before I started trip tx w vic. I have actually gained 5-10 lbs from pre tx weight. 20+ grams of fat 5 times a day (mandatory with meds) helps with sustaining your weight. I'm still tired a bit of the time and am not really in the mood to be social....but working out (for me anyways) has a POSITIVE effect on my mental as well as physical state of being.
You do not need to be eating 20g of fat with Victrelis. That is only for the folks who are treating with Incivek. Victrelis (aka Boceprevir) only requires that it be taken with food. There's no calorie or fat requirement.

NOT PER MY DOCTOR'S INSTRUCTION SHEET. Clearly states 20 grams of fat with each (vic) dossage...... In fact the first 2 treatments (without vic...only riba/inter) the higher fat content meal was also recommended for riba intake. Has something to do with the meds "attaching" to the fat to better "absorb" into my system. Not trying to be rude, but your advise contradicts my Doctors instructions. He is on the forefront specializing in liver disease treatment with a concentration on Hep C. I'm fortunate enough to have this facility located here in my hometown of San Antonio. :).

-- Edited by gsx1250fa on Tuesday 10th of July 2012 01:32:13 PM

-- Edited by gsx1250fa on Tuesday 10th of July 2012 01:45:23 PM

alohaKim · Senior Member

gsx1250fa wrote:
Workout (start out slow) and eat. Really any exercise program you can stick with. I restarted weight training shortly before I started trip tx w vic. I have actually gained 5-10 lbs from pre tx weight. 20+ grams of fat 5 times a day (mandatory with meds) helps with sustaining your weight. I'm still tired a bit of the time and am not really in the mood to be social....but working out (for me anyways) has a POSITIVE effect on my mental as well as physical state of being.

You do not need to be eating 20g of fat with Victrelis. That is only for the folks who are treating with Incivek. Victrelis (aka Boceprevir) only requires that it be taken with food. There's no calorie or fat requirement.

hrsetrdr · Guru

gsx1250fa wrote:
Workout (start out slow) and eat. Really any exercise program you can stick with. I restarted weight training shortly before I started trip tx w vic. I have actually gained 5-10 lbs from pre tx weight. 20+ grams of fat 5 times a day (mandatory with meds) helps with sustaining your weight. I'm still tired a bit of the time and am not really in the mood to be social....but working out (for me anyways) has a POSITIVE effect on my mental as well as physical state of being.

+1 for working out, or any physical activity which will make you feel like a living human being.

gsx1250fa · Veteran Member

Workout (start out slow) and eat. Really any exercise program you can stick with. I restarted weight training shortly before I started trip tx w vic. I have actually gained 5-10 lbs from pre tx weight. 20+ grams of fat 5 times a day (mandatory with meds) helps with sustaining your weight. I'm still tired a bit of the time and am not really in the mood to be social....but working out (for me anyways) has a POSITIVE effect on my mental as well as physical state of being.

EasternOntarioGirl · Member

David is on week 9 of interf/riba, week 3 of victrelis. He is really down for the count. He has zero energy, no appetite, sore mouth, gagging, lost 15 lbs and hasn't left the couch for 3 weeks. He seemed to do not bad before the victrelis but now its almost scary how sick he is. Is this par for the course and does it get better with time? Any advice would be appreciated.

Trudy

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