Is there a connection between side effects and viral load reduction?

[GINGERPAL]

Just wondering how much of a connection there is between side effects and vl reduction.
For those of you on triple tx who already received your vl results – do you see a connection?
How were your side effects and how did your vl respond?
For those with more side effects,  were your VL results neg?  And if so, what week?
If you respond, can you also indicate if you are on incevik or vitrellis.
Thanks.   ginger

[babs824]

please dont apologize or fear scaring others when u tell the truth about your situation. some others will say wow that sounds like my situation and some will say gosh mine is not so bad. either way u need to tell it as it is for your sanity sake. you have helped so many that u cant get support if u dont tell what is going on. hang in there, so many are keeping u and joe in their thoughts and prayers. keep the faith, warmly, babs824

[evangelin]

I noticed last night and remembered it from the last time that when Joe is sleeping, he takes at least 2 breaths to my one. (maybe 2 and 1/4 even.  Is that specifically the anemia that causes that?  I have always thought that it must be but never asked the Dr.  
Joe is just finishing the 2nd week of the Victrelis lead in and he feels dreadful.  His list of SX is long and I guess I was somehow hoping for a miracle for TX #4.  On Susie's continuum he seems to stay just above the "got to quit" category.  I wish with all my heart that he didn't have to go through this again. It feels like a very black cloud of opression over our houshold when Joe is on TX.  This makes me scared of the Victrelis addition.  
There is nowhere to go but forward.
If I share my feelings like above, I am always afraid I will scare new people so must keep adding the disclaimer that Joe, for some reason, gets sicker than most.  He is a tough person in every other circumstance I've seen him in  but can't do much more than sleep while on TX.  I feel like he is here but not really.  My 8 yr. old has shown some strange insecure behavior because of the loss of normality in our home.  I try my best to keep things going but I can't make up for the loss of Dad.  He is the fun Dad that takes him fishing and plays games and laughs and jokes.  I can't make it all better and today I am sad.
I'm sorry to be depressing,
Ev

[SusieS2010]

Ginger, your RN is right. If the medicine is working, your viral load is falling. The objective of treating is to reduce viral load until it is gone (undetectable). When hemoglobin falls that means the ribavirin is doing what it is supposed to do. It is supressing the bone marrow. So, that can be the cause of some of the fatigue, breathlessness, and cough. In that respect the meds (riba) working, can make you feel worse. However, many people don't get a big enough suppression that they feel it. When hemoglobin drops slowly, we ar less impacted in the way we feel. The bottom line is that side effects happen on a continuum. It goes from feeling nothing to feeling so bad you must stop treatment. Most people fall somewhere in between those two ends. It has nothing to do with  how well the meds are working.

[working dog]

i don't know why but my hgb really tanked 3 to 4 days after i stopped the incivek...today it feels very low...maybe i'm gonna be one of though's that just has to stay in bed most of the time.....billy

[GINGERPAL]

My RN said it if get anemia that is a good sign.  She said that means that the drugs are working.   But guess that doesn't mean that the VL is reducing.
Thanks all for clearing it up for me.

[eureka254]

Victrelis and Incivek aside, my husband's experience with SOC goes against that theory.  He had a starting VL of 17.9 million, got to undetected by week 13, and found treatment pretty tolerable until about week 16.  It's the meds that make you feel awful, not VL reduction.

[can-do-man]

You got that right girl, we have seen it many times.

[GINGERPAL]

thanks susies2010.   i was curious about that.  

[SusieS2010]

A popular misconception is that the more side effects one has, the more likely the chance of clearing the virus. This is totally untrue. I know many people who were very sick from sides and didn't clear and then there are those few who swear they didn't know they were on the meds and they cleared. I wish you the best of luck.

[joemc34606]

I had a few sides the first week, but I still had a lot of energy and even made it to the gym about 3 days a week, but I haven't been able to go for about the last 4 weeks. Once the anemia kicks in you have no energy and get out of breath very easily. Joe

[GINGERPAL]

thanks joe.  i see that you were und at 4 weeks.     When did your side effects start (like in a few days of starting your medications or in a few weeks  of starting)?

[joemc34606]

I have been on incevik for 12 weeks now finishing up on Friday, I feel in the beginning when you get the flu like systems the chills, cold sweats, fevers that the drugs killing off the virus, but later on after six weeks or so your blood counts start to go down then your feeling bad from the anemia. The incevik website says everyones rbc rose after stopping incevik so I can't wait until Friday. I thought the first time I treated my sides were worse when the virus was present. Good luck. Joe