pegasys/copegus sides

[myFatherswill]

Hello everyone and God bless!!
                                              I take my second shot the day after tomorrow. This past week has been good. People say they lost their appetites, of course I have not. Its actually seemed to have increased. I do tire easily, I am a waitress. I really cant complain, I have even been to the gym to run on the treadmill. My question is do you guys think or have you experienced that how you tolerate your first shot is how you will tolerate this treatment all together? Or after this medicine builds up in my system am I in for it?? Any comment will be greatly appreciated. I never seem to be lucky enough to lose my appetite... lol

[nygirl7]

You aren't alone 'Will - lots of us got it that way and felt the exact same way about getting rid of something we didn't even know prior that we had.  And a lot of us HAVE gotten rid of it so......remember that!  :)

[myFatherswill]

A blood test was done because while trying to give blood they called me and said there was a problem with my donation. I was an i.v. drug user for many years so I had a test done to see what I had contracted. Now more than ten years later I want to be free of this.

[mpace6983]

420,000 isnt real high as VL counts go. Your biopsy shows only stage one fibrosis. Sounds like going in your in better shape than a lot of folks. my baseline was 1,600,000. but i had 3rd stage fibrosis and fatty liver disease. Most people originally see their family Dr. c/o chronic fatigue and maybe some dull pain in upper right abdominal quadrant. Was this why you went to see the doc originally? I was just curious as to why a HCV RNA bloodtest was done to start with. Were you real tired all the time or... Good Luck, I wish you a successful and smooth treatment.

[HCA]

You don't have any idea what your serum levels of ribavirin are.
This can only be established  by the High Performance Liquid Chromatography Test.
I feel you are not on entirely familiar territory here,but if you want the last word you can have it.

[PegOnPeg]

I never said that riba was responsible for my response...I said that my hemaglobin never dropped to dangerously low levels & I've responded well.

The point was that you stated "There is a lot of evidence that a significant drop in haemoglobin is indicitive of desirable serum levels of ribavirin. "  This statement is not true in my case.

[HCA]

Your virological response at four weeks is not a ribavirin function.
Ribavirin does not knock down the wild type (unmutated) virus-it corrupts the mutational defence of the virus and causes errors which inhibit the design of a successful mutant.
In the case of rapid responders successful mutation is less likely because of the rapid viral supression hence the high SVR rates.
The efficacy of ribavirin is not revealed in the treatment viral load tests.It is vital to preventing relapse which is caused by a variant surviving the interferon treatment and replicating freely when treatment ceases.
Your own rapid respsonse was due to your sensitivity to interferon and I am not sure of the relevance beyond that

[PegOnPeg]

Unfortunatly, the one thing that is consistent with treating is that it's different for everyone...there is always an exception to the rule.

I am coming up to week 43 of 48.

*I am G1a
*Initial vl was 13,500,000
*vl @ 4 weeks had the virus @ <50...I am a rapid responder, unheard of for a vl that high.
*My hemaglobin never dropped below 11.2 & my last blood work has it back to 12!

Therefore, the statement that "...you do indeed want the ribavirin to bring the haemoglobin down,as although it is a side effect it is an important indicator of viable serum levels" does not apply to all.

It's important to not pidgeon hole ppl for treatment...we all respond differently.

[HCA]

There is a lot of evidence that a significant drop in haemoglobin is indicitive of desirable serum levels of ribavirin.
'Researchers also found that in the third of study participants whose ribavirin dosage was reduced as a result of anemia, cure rates actually improved to as high as 52 percent, whereas in those whose ribavirin dose stayed the same, cure rates were lower, at 37 percent.

“Contrary to the prevailing belief that ribavirin dose reduction would lead to fewer people recovering from their infection, it actually increased the sustained viral response rate when reduction was used to manage treatment-related anemia,” says Sulkowski, who attributes the onset of anemia as a sign that the body had sufficient ribavirin to fight off the infection'
This is an important study;
http://www.hopkinsmedicine.org/Press_releases/2009/07_22_09.html
which has been discussed here previously.
Actually,contrary to your comment you do indeed want the ribavirin to bring the haemoglobin down,as although it is a side effect it is an important indicator of viable serum levels.
Exercise is fine-I am simply saying that the ability to work a treadmill at say,eight weeks into treatment is not necessarily all upside.

[myFatherswill]

Not sure about the fudge sicles but I seem to be craving sweets. Can't get enough.

[mpace6983]

Have you completely lost your mind? If you keep posting the "secret cure" the FDA will switch it from OTC status to Rx only. LOL

[myFatherswill]

I have had this for at least twelve years. I found out that I had it while trying to donate blood. I had a liver biopsy in 2007 grade 1. My viral load as of last month was 421,019. Genotype 1.

[mpace6983]

Did you have a liver biopsy? If you did, did it show any liver damage. Also, have the done a bloodtest to check your viral load? If they have what was the count? You said that you were running on a treadmill and going to the Gym. How was your HCV found. I mean was it just a random bloodtest or? Most people go to the Dr. with complaints of chronic fatigue and thats when their hep-c is diagnosed. I was just curious as to why you went to the Dr. and what caused them to want to do a bloodtest to check for HCV infection.

[Larry57]

"Actually you don't want to be able to work the treadmill after a couple of weeks because you want the ribavirin to bring your haemoglobin down to the point where you don't have the puff".

I am not sure I understand this comment.  Maybe I am taking it out of context.  

Exercise is a GREAT thing while undergoing treatment, and the literature supports.  I have be able to continue an exercise program (week 34 of 48) while in the Illuminate Trial.  Most weeks in the summer I have done in excess of 100 miles per week on my bicycle, and hiking up hills is a big part of my winter and spring program. Albiet at a much slower pace, but at a greater intensity (my heartrate is at or near 85% of my max throughout the workout).

You do not "want" the ribavirin to bring the Hgb down, that is just one of the side effects of the drug.  As reported in journals, and on this list, there may be a correlation between anemia and patients response to therapy, but that has not been further proven.  There is also no study which relates what degree of anemia would propagate a benefit.  And also, there is no study which shows that not having anemia is a "bad" thing.  I doubt that there are many patients who do not have at least a 10 or 20% reduction in there Hgb.  With my treatment, I started with a Hct at 47, and am currently (as of week 28) my crit is 37.

Everybody responds differently, and everybody had varying degrees of side effects throughout their therapy. My latest problem is peripheral neuropathy.  (any thoughts on that anyone?)  I have been very lucky!!

So, stay positive, stay active, stay hydrated, and stay connected to your friends.

Wishing you the best!!!

Larry

[nygirl7]

No unfortunately the first week was no indicator at all for ME.  But hopefully you will make out much better, especially having to wait tables which I remember very well and could never handle even now and I"m two years off treatment.

That's good though because it means you have good core strength and that might help you big time.

Sides will come and sides will go - change just when you get used to one.  But if you start to run into problems and come in here there are either medications or tricks that we've all used to get through.  The lethargy that comes well let's hope you don't get that one cause it's the only one we all seem to get stuck with with no cure except really REST when you can.  When you have a day off don't run around like crazy trying to be superwoman just remember you ARE on treatment and you DO HAVE TO REST.

Other than that my top secret cure was ice cream.  When I lost my appetite and couldn't think of eating well there were so many flavors I never got tired and they made me feel kind of happy :)

(Not such a secret I must have eaten 1,000 fudgicles on treatment and those in here sure remember because I was obsessed with them).


I tred for 72 weeks and am a single mom (Had no real choice) who came in every day.  It was NOT always easy but remember...there is an end in sight and it's not forever.  Somehow that helped me a lot.

But mostly the people in here and the forum saved my life. I would NOT have made it through it without them both. Which is why a lot of us are still here today not only to help but because there are some GREAT people in here who will do everything they can to help you through this.

Always remember THAT.  Blessings, Deb

[mpace6983]

I will be taking peg inj #30 this thursday. I'm going to be honest with you,if you google Peg/CoPeg side effects,I think I've had every one of them from mild to severe. I have stage 3 fibrosis and fatty liver disease. Liver damage will cause someone to metabolize food ,medicine everything slower,so it stays in your system longer. Pegasys is formulated to be cleared from your system in 7 days,thats why you take your inj once a week.When interferon was started to be used for HCV,you had to take it every couple of days 2-3 i'm not real sure.Then with the new pegylated (long acting) version the inj only needed to be taken 1 x week. It seems like fatigue,loss of appetite,insomnia,anxiety and just general flu like symptoms occur more than the others. But last week I spoke with a guy whos gastro stopped his tx at 35 weeks because he developed  acute pancreatitis from the meds. 35 WEEKS!!? You would think after 35 weeks that you would be in the clear. The best advice that I've gotten from folks is,be sure to tell your MD any problems your having,dont try to "tuff it out" You may need an Rx for sleep,pain anxiety. Ibuprofen seems to help me but it caused my AST and ALT enzymes to go up> Gastro said to stop the IBU and gave me a script for  Tramadol for pain. I also am on ambien for sleep,But didn't need anything for sleep until around week 20. (weird) The one constant for Tx side effects is that they will probably change over and over. Be sure to get your sleep(try to stay on some sort of schedule. A nap or just laying down for 30-45 min in the afternoon can help. That drinking lots of fluids stuff is real. (1/2oz per Lb. of body weight) Try to go out of the house everyday (wal-mart,the mall,Mickey D's anything) You said your a waitress, if you can keep working thats probably a good thing.Ask M.D. But if you stop working,dont hibernate in the bed. I did that and was spending 15-20 hrs a day in the bed. caused me to have terrible anxiety and if you dont move around and get your "blood circulating" lots of bad things:bone pain, constipation, insonmia and your meds wont work as well. I know I've written a book here,but there's no short answer. The virus as well as the treatment are both sort of hard to fit into a nice sqaue box. Good Luck and keep posting.

[myFatherswill]

Thanks for your reply and congratulations on finishing!!  Did you do the 48 wks.  just curious. I have one down and 47 to go. Thanks so much again for replying to my question.
                                

[Lynno711]

Congrats. on starting tx.

My first three months I was tired and lost my cool quite easily.  It seems to be different for everyone.
I don't think it has anything to do with the first shot.  You are not "in for it".  
I really didn't lose my appetite until the last month or so. (I'm done now, last shot Aug.7)

I hope all goes well for you.

Good Luck - Lynne

[HCA]

No the first shot isn't a trailer for the whole movie.
Actually you don't want to be able to work the treadmill after a couple of weeks because you want the ribavirin to bring your haemoglobin down to the point where you don't have the puff.