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Avatar universal

Any info on why some people don't get sides?

With all of these threads about how everyone reacts differently to the sides, does anyone have any info on who is more likely to experience sides? Any info on people most likely NOT to experience sides?

For example, if you have higher viral count at the beginning or are older or younger than 50, etc.

I'm 32 and have felt very little in the way of sides and am just curious why some people have such a strong reaction to them.
48 Responses
476246 tn?1418874514
I personally think that there is no way of knowing.

For myself, I was not surprised that I reacted so strongly, as I am quite sensitive to medication. I usually don't need more that a half dose of tylenol and feel dizzy from the weakest shot they give at the dentists. I feel it in my body for the next two days. I get ill for about 3 days after a vaccination.

All this happened without my blood tests being too low.

At around week 20, it finally evened out and I have been feeling much better. The weirdest thing is that my hgb actually hit the lowest (just below 10) when I was feeling at my best.

So the way one reacts to the meds, has not necessarily anything to do with the how your blood values actually are.

I gotta add, that I was having symptoms of fatigue before I started treatment and that I have low blood pressure. I am 45 and have had 5 children. Maybe my body is weaker. But before I got ill, I was very active and could do quite heavy physical work and did not get tired easily at all. I could also do physical work for long hours with little sleep.

But it is known that younger ppl are more likely to have an easier time going through tx.

320078 tn?1278348320
I dont about age, or vl count.  I know for me the first couple of months I was okay.  I hadnt even joined or looked for the this forum until my 10 or 11 week into treatment when the sides started to hit.  I the first couple of months I would take my shot on a Friday feel achey or a bit more tired but bascially not too bad.  By week 10, the rash started and the horribel mouth sores.

some of us have mangebale sides, others are hit in the very beginning and need saftey meds to continue treatment.  i was forutnate not need safetly meds, but my sides were awful.

I did treat for 48 weeks and am post 5 or 6 weeks and still UND!

Good luck, perhaps your one of the lucky ones with no sides!

peace
rita
476246 tn?1418874514
Just wanted to add something

Our metabolisms are different, the chemical build ups in our bodies, the food we eat, the way we live, we have different predisposed medical conditions, allergies, autoimmune diseases, etc, etc... all these things will call out different chemical reactions in our bodies

Avatar universal
It is very rare that people :"don't get sides"

It is far more common that they have minimal sides some weeks.

It is also fairly common that as TX continues sides may mount.  It may be very commonplace that the first few weeks may seem to be a snap, but as time goes by they can accumulate due to blood values that tank, increased random bacterial infections (UTI's, mouth sores), effects of prolonged sleep disruption and what for some is the worst; mental sides (depression, rage, etc).

I have not treated but I suppose that what gets to so many people isn't always so much the actual sides themselves but the sheer length of time that one must put up with them.  One might be able to put up with the worst week easily if one could bookend it with good health.  I think that it's the prospect that it never seems to end for some people is one factor which makes it a very tough treatment; that is the marathon aspect of it, not the looking at any one week.  The one mile run is much different in the first mile of a marathon than in the last mile.

Why is it so that some people don't get sides?   I think that it is partially to do with immune response.  I think it has to do with how some people report or tolerate pain.  It may have to do with the type of jobs they have or support that they have at home.  A ditchdigger may have more trouble with anemia than a bookkeeper.  Their sides may be the same but the level of exhertion that the ditchdigger must bring could be a dealbreaker for them but quite acceptable for someone who must not "go to the well" as much physically.

One might make the same case in which the same sides might be acceptable in one household but not in another household or circumstance.  Now pretend the bookeeper was retired and had a maid and a friend who shopped for them and our poor tired ditchdigger was a single parent with 5 young kids; one in diapers, one out for soccer, one disabled etc.  (You see; it isn't always "the sides" but the circumstances on is in that make things tolerable/intolerable)

I think a key point in your question may not be some much if people have sides..... but the issue of how the existing sides are TOLERATED.  Your question about people not having sides may involve a very small group.  The issue on how the sides end up being tolerated ends up affecting a much much larger group.

By the way.....I know someone who claims that they have virtually no sides and who cleared, so no sides does not automatically mean; no sides = no immune response.

best,
willy
Avatar universal
Wille,
I agree the tolerance level being a huge factor.  I've heard side effects related by many different people and they appeared to be exactly what I was experiencing.  Some of those people ended up bed ridden and I continue to work every day.  
I've managed the psychological effects equally as well.  I've never taken ad's or sedatives and I've had some very dark days so I really think it has a lot to do with what we are able to tolerate.  I have 72 wks of treatment to complete but I don't let that overwhelm me to the point where it effects by attitude.  I just won't let that happen.  I never feel good anymore but I didn't expect to after starting treatment.  I've settled into an acceptable level of hell for lack of a better explanation. Blood levels are low, I'm on rescues but that's the nature of the beast.  I roll with it the best I can.  So treatment is very individualized, just like people.  I don't dwell on it and I expect the unexpected so I'm never too surprised.  Disappointed sometimes, but never surprised.
Trinity
    
Avatar universal
of course tolerance/perception of pain and discomfort is somwhat individual. That said, just because someone describes something that you * think* is similar to what you're experiencing, does not mean you're both experiencing the same things.

Words can only go so far and the human tendency of "I know what you mean" have significant limitations.

Just think for example, how many times when you are treating, someone not treating said something like, "oh yeah I know what you're going through", and think of how mad you got because you understood fully that they had absolutely no idea of what you were going through!

To some extent, I think that same thing holds true even within this group. You may think you know what someone's going to, but only that person really knows and to suggest that if you are experiencing the same thing you would handle it much differently, well I think that's naïve to say the least.

personally, I held several sports related endurance records prior to treatment. Not to toot my horn, but I was considered a pretty tough fellow by my peers. treatment however, basically brought me to my knees, it was excruciating difficult and the most humbling experience of my life. I was unable to work, unable to leave the house most of the time.

I think it's great that some people are able to work, and function pretty normally during treatment. But for those that can't, I think you're doing them a disservice by suggesting that how you "tolerate" the side effects is the issue, in the  sense that tolerance is how different people react to the same thing.



Avatar universal
to more specifically answer the question, people simply are different and therefore will metabolize drugs and the handle physical situations differently. Take Everest for example. Some, have a relatively easy time at base camp, and others simply cannot adapt. It is nothing to do with how they "tolerate" the lack of oxygen, it's a very physical and individualistic thing. People simply react differently interferon. Interferon is an immune system booster and we all had very individualistic immune systems.
Avatar universal
just want to add that my last two posts were not aimed in any one particular individual. I like and respect both Willy and Trinity, but this is a sensitive subject to me based on my experience and this whole idea that we have a lot of control in this matter has been put forth before and that is  what I'm responding to.
Avatar universal
Thanks for your response, Jim. I really agree with your first post regarding how people try to relate to one another. You never truly know what it is like to walk in someone else's shoes. You can watch movies about the suffering in Somalia, for example, but you will never know what it is like until you live there.

I agree with you concerning how our individual bioforums react to chemicals. We are all different, just like our fingerprints are different. I also believe that Trinity and Willy make valid points that we each have different psycological tolerances and responses to stress, meaning that some of people's perception of symptoms can be exascerbated by their mental reaction to the stress.

I think that can be said without taking anything away from Jim's point about each of us having our own chemical design and physical tolerance levels.
Avatar universal
GK: meaning that some of people's perception of symptoms can be exascerbated by their mental reaction to the stress.
-----------------------
I certainly don't deny this, but at the same time it's not necessarily (and quite often not) the relevant factor with interferon treatment. At least based on my own personal experience and a careful reading of the experience that many others have. I guess it's the broad sweeping statements some have made that how we react to side effects is pretty much within our control that get my attention. Putting my story behind, we have a lady here are both raced and did stunts on dirt bikes. Anyone who knows anything about that sport will understand that this was one tough person. Treatment literally brought her to her knees. I have no doubt it absolutely nothing to do with her mental outlook. It was simply how the drugs interacted with her individual system.
Avatar universal
"appeared to be exactly what I was experiencing."

I never said they were exactly the same.  How could I know, and how could anyone else know what each is experiencing.  Perhaps I've ineffectively described my side effects, minimized them to a degree and if someone else were experiencing them it would be much more devastating and if I went through their experience it may be a different story as well.   That is what I'm trying to say more or less.  
I know myself and I know I have a very high tolerance level so that has worked in my favor.  I've gone to work many a day, throwing up, shaking, weakness to the point I could not put one foot in front of the other, fever, dizziness and had to sit down on the ground in the parking lot or I was going to pass out. That pretty much describes the first three months and last 7 haven't been a whole lot better but it has improved.  Perhaps that would have cinched it for some, who knows.  I wasn't trying to minimize anyone else's experience, just relating that if I did not posses such a high tolerance I probably would not have fared as well.
Avatar universal
While sitting in the trial doc's office on Wednesday, begging for Procrit after they threatened to dose reduce me, he told me that they have never seen someone with sides as severe as mine and that cirrhotics can have more trouble. Don't know if I have heard that before, in fact I have heard otherwise somewhere.

This guy ought to visit this board--there are plenty here that have come and gone with severe sx.

At shot 9 I still suffer pretty harsh interferon flu, but my biggest problem is overwhelming nausea and stomach pain. I can handle the regular sides, but when the stomach roars on top of them it is almost beyond what I can bear.

I never went below 10 (15.75 to 10.1) but have FELT TERRIBLE. Gasping for breath in conversation, chest pains, pretty much have to stay sitting. Again, I can handle all of it until the nausea joins the party. I do get a break from the it now and again....but there is no rhyme or reason. Totally impossible to predict. It has been gone for the last 6 days and thanks goodness, at that last visit.

I was so upset that I couldn't get Procrit that I asked about a trial patient advocate and lo and behold by the end of the visit, dose reduction was off the table and they are going to kick me out of the trial if my stomach problems come back. They said my QOL was too compromised.

I said, now wait a minute, I agree with you if my safety is compromised, but QOL is subjective. And you're not worried enough to prescribe the rescue drugs? How can you decide how much I can handle? Just like Willy's example.

I had to promise I would tell them if I get sick again so they can FIRE ME! A bunch of ****. They have me on compazine, buspar and yes, finally procrit, so maybe it was just posturing to get me to shut up.

I don't know what will happen. If I fess up and ask for help (like, let's try a DIFFERENT anti-nausea med) I am admitting I am sick again and they will boot me. But I guess I can transition to my regular hepatologist and get all the help I need. I have to hang on as long as possible and hope that I am getting the PI for at least a while longer.

My week 8 VL will be back next Wednesday. I was detectable but less than 25. Anybody else have stomach issues do them in? And find that compazine didn't do the trick?





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