New to this Forum

Hello All. I am a first time forum user, but have gone through 2 rounds of HCV treatment.(1A) First was a trial, I stopped after 4 months due to loss of eyesight (it came back). 2nd round was 48 weeks, was non-detectable, but it came back, and after a year, my viral load is up to 26 mil. I plan on going for my 3rd round in May/June with one of the new meds.

I want to ask, what do you say to people, who have never experienced this themselves, who say "I hear not everyone has side effects".

I will be part of this forum this time around. I will study the language you all use. (haha). Thank you for being here.

ShortLaura (5 ft)

[Bill1954]

They built you a bit close to the ground, huh :o)? Welcome to the discussion group, Laura. Sorry to hear you had so many problems in the past; hopefully, one of the DAA drugs will help you prevail.

There’s a list of abbreviations and acronyms on this page in the lower right hand margin in a box titled ‘most viewed health pages’; it should help with the language barrier:

http://www.medhelp.org/health_pages/Hepatitis/Common-Hepatitis-C-Acronyms/show/3?cid=64

Good luck and take care-

--Bill

[Mary4now]

Laura,
Its so difficult to reskpond to people sometimes. I guess its true, some people dont have as harsh side effects and they are very fortunate.  Unfortunately most people cannot understand what anyone else is going through unless they have been there, thats why its important for everyone to develop compassion
I wish you luck on your new treatment and the courage to prevail.  hope to see you posting.
Mary4now

[Isobella]

I'd say, "I hear not everyone doesn't."

Welcome to the forum, Laura.  The people on this site were my lifesavers during treatment and I hope you find the same,  Many people just can't understand, so it helps to be able to come here and talk with those who can.

Sorry about the hard time you've had with past tx, I'm wishing ya great success and few side effects with the new meds added in next round.

Isobella

[Susan_1a_CC]

Welcome to the forum and very best wishes on your next treatment.  Geez, you've had a time of it so far.

You asked what one would say re: not everyone has s.e's.  I think the answer is situationally dependent:  if you're talking w/ your health care provider - I'd say, yes, but check my record and then we can talk about my response.  If you're talking to a friend - I'd say, yes that's true but it's a cold comfort to me.  If you're talking to a bystander I wouldn't invest any effort on expanding their awareness as they aren't really invested in you but are likely looking for a way not to concern themselves further.  I think you get my drift... HTH

Susan  

[tashka]

Laura, welcome to the forum. I hope the next round of treatment will work for you.

People who say that not everybody has side effects are actually correct. Some don't have any or have very few and mild problems during treatment. But others have a lot of side effects. It just can not be predicted. If the person has basic intelligence and is able to focus on what others feel, he/she will understand that different people have different experiences.

[Fnzol]

26 * 10e6.  Yipes.  Good luck.  

[RobertBeWell]

"I want to ask, what do you say to people, who have never experienced this themselves, who say "I hear not everyone has side effects".

For the most part, that's true for me, but I'm not sure it's possible to do a full course of treatment with SOME side effects, even if relatively minor. These drugs can and do wear on most everyone over time.

Better to say "not everyone has SEVERE side effects".

In my case, a little skin dryness, thirst, mild fatigue at times, and infrequent eye irritation (burning, stinging, mostly the day after my shot) is about all I've experienced. I haven't altered my activity level or daily routine.

RBW

[RobertBeWell]

"For the most part, that's true for me, but I'm not sure it's possible to do a full course of treatment with SOME side effects, even if relatively minor"

should have said "WITHOUT SOME side effects".

Oh yes, did I mention one other side effect for me is the inability to clearly convey my thoughts in writing?

:-)

RBW

[Junebug812]

My own lovely son told me he knew two people who went through tx and didn't have sx. Because he loves me, he hoped I would be one of those and couldn't understand why I'm having a really hard time on tx. LOTS of harsh sx which have changed my daily routine substantially. I know he was coming from a place of concern though, very much wanting me to feel fine and get through this without difficulties. So that's how I look at it. I figure people just don't want to acknowledge that this tx can be hard for some because to acknowledge that is to accept that someone you love or simply care about is in pain. That's a hard thing to accept.

I wish you the best of luck next go around.

June