What's the Secret to Getting Responses on this Forum??

[cubgirl]

I've posted about 5 posts in 3 days with few responses.  I'm looking for knowledge and support.  Am I on the right Forum for Hep-C support & advice?  I'm starting TX today.  The nurse came today to teach me how to take my meds.  I'm treatment-naive and going on P+R and Telaprevir.  I'm 57 yo female and have had the virus for 20 years.  Liver is @ stage 2 (of 4) and viral load is 499,000.  What is it like to be in treatment?  Will it make me as very sick or is it not as bad as I hear it is?  Anyone out there have a positive experience, i.e., few side effects?  Or should I put on my seat belt for a bumpy ride?  I am afraid of treatment but more afraid not to start... Please share your experiences.  I am anxious.  Thanks

[crossroadsec]

We're here for ua. I had rough nausea n low grade fever this weekend. Im rooting for ya! Karen

[Mary4now]

Hi, take it as it comes and take care of yourself, get plenty of rest, water, good food, and be kind to yourself.  these are powerful drugs designed to get rid of the virus just remember that and do your best.  we are all rooting for you.
hugs mary

[cubgirl]

I am beginning to figure these drugs out: 1) Pegasys takes the load off my weary immune system, 2) Ribavirin attacks the Hep-C cells directly and 3) Telaprevir prevents Hep-C cells from replicating.  I like the plan.  But I could tell immediately these are extremely powerful drugs.  When I don't feel ill, I think I can see an old gleam in my eye that faded years ago.  Maybe it's psychological but I feel like I'm taking charge of this disease -- it no longer owns me!  Succeed or fail, I am no longer a victim!  Thanks for your viewpoints and supporting comments.  They help...

[willbb]

Take it a day at a time..You may say to your self some days "why do I feel so terrific and other days "why can"t I get my face off the carpet.  point being ..tx. affects eveyrone differently ...some have very mild sides early and worse later on and vice versa.    Be good to your self ..try to carry on as normal a life as you can.. drink lots of water(seems to help) and hang on....  the ride may be smooth or a tad bumpy  :)

Good luck

Will

[hcvJames]

you won't feel like that for 24 weeks, you'll either feel better or worse. I'd bet better though cuz the biggest reaction to the med's is often the first shot. We are taking very powerful drugs and it's a shock to the system. All the best.

[joemc34606]

I am on my 3rd shot as of yesterday, the first shot was the worst, flu like symptoms chills cold sweats. After that I've been pretty good, first week just tired a littla nausea trying to eating the 20 grams of fat but I've gotten a good plan going and I feel pretty good. I take a protein shake with whole milk and a teaspoon of peanut butter I figure about 30 grams of protein, much easier to drink than trying to eat 20 grams. I also take 2 mutl vitamins in the morning and 2 fish oil pills. So far feeling pretty good, been working full time and go to gym 3to4 days a week in evening. So everyone is affected differently, don't get yourself down before you even start. Good luck
Joe

[cubgirl]

Took my 1st shot 20 hours ago & initiated Telaprevir & Ribavirin.  What a ride.  Noticed several things:  immediate/slight metallic taste, loose stools (subsiding), fever/chills (tolerable, beginning 8 hours after shot - lasted ~ 6 hours), very tired and a little achy.  Also a headache that won't go away: it's either slight or pronounced.  If this is the worst of it, then it won't be that bad.  I've heard it gets better over time.  Any opinions on that?  I can't believe I'll feel like this for 24 weeks!

[ninjamonkey]

I haven't started TX yet so no advice but I will tell you the people here are great for support or a good laugh. Welcome and good luck!
Cas

[belle19]

hey there, good luck on starting tx.  noone knows what to expect when they start.  for me, i'm on my 6th shot and so far only sx have been being tired.  i feel fortunate for that.  i still go to my cardio classes but not for the full hour, 45 mins. instead.  i'm slightly anemic at this time so my study nurse lowered my riba.  the most important thing i can tell you is drinks LOTS of water.  it helps!!!  best wishes and we'll keep in touch.  belle

[cubgirl]

Thanks everyone... well, I see having Hep-C has not dampened your sense of humor!  I just don't want to go through this alone & having Hep-C is such a stigma (stupid but true).

[nomorehepcliz]

as to sides, we are all different - there are some similarities - fatigue being one, but it seems like everyone responds differently.  So, you can get a general idea of what to expect, but you may not be the same.  I have had little trouble - I am tired, and get dizzy but it's manageable.

[mlkinmb]

Wishing you all the best. I have not treated yet,but plan to very soon. I've learned so much by reading and asking on this forum. I still find myself somewhat concerned about how the triple therapy is going to affect me, but I feel the time is right to move forward regardless.  Members will respond, just keep checking back, give it time. Take care, Mike

[willbb]

"What's the Secret to Getting Responses on this Forum??"


..put as heading     'Just won Loto and will share with fellow forum members"

  You seem to have got some good responses ..sometimes just have to be a little patient and good luck with tx... welcome.

Will

[flcyclist]

Heck, I'll do it for a 10 spot.  But, yes, questions slipped into another thread tend to go unnoticed.  And a busy weekend avoiding yard work.  

[can-do-man]

"What's the Secret to Getting Responses on this Forum??"

Slip me a couple twenties and i will take care of it.  Thats why they call me Cando here.... :) Really just hang around and good luck.

cando

[spectda]

I was going to respond with many of the answers Trish already mentioned. You had some very knowledgeable people answer your questions on some of the threads you posted on. There is no better forum in my opinion to get scientific information about treatment, especiall with the DAAs.

Welcome, we are all on your side and wish you success
-Dave

Below is medhelp's blurb (on the top of the page) about this forum, the social forum as mentioned in the statement is more for emotional support, fun, other issues, questions and I believe everything except religion or politics. Much fewer people post on the social forum then this one though.

"This forum is for questions about medical issues and research aspects of Hepatitis C such as, questions about being newly diagnosed, questions about current treatments, information and participation in discussions about research studies and clinical trials related to Hepatitis. If you would like to communicate with other people who have been touched by Hepatitis, please visit our new Hepatitis Social/Living with Hepatitis forum"
http://www.medhelp.org/forums/Hepatitis-Social/show/76?camp=msc

[Trish77]

Because it's summertime and on a weekend....because you posted one of your questions in someone's thread celebrating end of treatment and you'll get better responses posting it in it's own separate thread....depends if someone feels whoever answered you covered it well enough....any number of reasons except that people don't care.

We do tend to answer as much as we can amongst all the folks here and everybody contributing where they can, it just hits slow periods at times.

As for treatment you should be ready for anything and take it as it comes a day at a time and roll with it.  It might go easy for you, might be middling to downright difficult.  Best to be prepared for the worst and grateful if it's not all that bad.  Not a single one of us knew what treatment would be like for us going into it, many of us had a certain amount of fear of the unknown and we did manage to get through it.  Good luck with your treatment and hope things go well for you with good results.

[OC]

it would help to be in close contact with your doctor or their nurse, for guidance etc..you will at the minimum have a blood test done at 4 weeks & 12 weeks...not sure what else they will do.

[streamline569]

I started incivek this month 4th shot and very little sides. I post a lot to tell people how great I'm feeling. Of course I'm tired and I rest allot. My choice, I think if I had to go work right now it would be difficult but doable. I'm just really enjoying the time to take care of myself.

Treat and don't worry about anything. It seems that anything that comes up there will be an anecdote for. Worry had been my worse enemy. Not now, just hoping to be undetectable soon. I don't have any of the horrible depression or rash or nausea that was talked about. I hope it stays this way and I wish the same for you.

Why people aren't answering, just a guess, I know I browse through and the way things are worded catch my eye or not, but that's just me.

Good luck you have lots of company starting treatment.

[OC]

cubgirl, you are in the right forum, sometimes it takes awhile to get answers because not everyone is at the computer at the same time...be patient...yes the ride will be bumpy, but you need to do this...my previous treatment felt like a had the flu for 48 weeks...get plenty of rest, eat right, and drink alot of water...if you can do light exercise (atleast walking), that would be great.