hello, my name is carlajean and I have been post treatment 6 mos. now and have terrible side affect's ,and or withdrawal symptom's, I feel crazy@ time's and my body pain is terrible and depression worse even on med's I take elavial and adderral and valium have had yelling out burt's and angry to say the least, lasting affect's are real and I was told nothing about how I would feel after treatment by anyone I had to find out by myself,i am also tired and panic attack's insommia,pain in back feet,hip's and leg's ,gastro problem's in the bowel department I feel hot and cold and still have fever's @ nite can anyone relate? when does it stop ?

I am 9 yrs post therapy and feel horrible!  Still getting diagnosed. All over joint paint, extreme fatigue, might be Polymyalgic rheumatica... Never felt like the same old me after treatment, but at least the virus cleared.

Hi, welcome, this is an old post.  If you go to the top of the page and click on "post question" I am sure you will receive some answers
Good luck

It's June 2013. Is anyone post treatment for 10 years? My husband is. He lives in agony and is being diagnosed with more serious problems frequently. The doctors have put him on antidepressants, acupuncture, physical therapy, etc. They are not helping his quality of life. They are not interested in learning the side effects of combo therapy. Anyone have any ideas ?

ok thanks

Hello and welcome to the forum.

You are posting in an old thread and many may not read it. You will receive more responses if you start a new thread. Go towards the top to the orange bar "Post a Question and click on it and write your post.

You could copy and paste this post but please also include which drugs you will be taking (Victrellis or Incivek) so people know what you are taking.

I will respond more after you let us know which drugs you will be on.

Congratulations on starting treatment.

hi, im about to start the new trmnt i am geno type 1, and scared out of my mind !!!!  im scared because i tried the old treatment 1 1/2 yrs ago and i had debilitating side effects had to leave my job for months during the trmnt.  well thank god my boss is very understanding they are giving me 6mths off !! to start this trmnt nxt week ! will be 3diff drugs ill be on (new trmnt) im scared of the side effects and the long term effects !! im 51yrs old and already am getting deppressed just the thought of doing this harsh trmnt and memories of the last time i tried !! only stayed on the trmnt for 3mths and my viral count did go down very low to this day and my dr is suggesting that i do the new trmnt good candidate to be svr a! any suggestions on what i can take or do for the side effects during trmnt !! i was very very fatigue/headaches/depression/dry dry skin/rash/what can i take >? pls help im getting way too scared.  

Right On!!! I just finished tx 3 weeks ago w/ the "new" drug. (6mos. tx time), and I'm still very tired, my hair is till thinning, skin still dry and itchy, and my brain has a "fog" so bad that I can't even remember where I'm at or what I'm doing for about a third of the time. I used to be bubbly, and FULL of energy, and friends would call me to ask about something that happened 20yrs. ago because my memory used to be awesome!!!! Now I can't remember where I'm going when I'm driving down the road.... I would do tx again, but I really hope the after effects go away soon!

Just about the best statement yet!!!!

Jim states: <strong>Two people with the exact same stats can read the same post treatment experiences and come to different conclusion about whether they will treat or not. The important thing is that the information be put out there so the eventual decision -- whether it be to treat or not -- is based on all available information.</strong>

Damn right!!!! And not based off of what Kalio's Dr approves, or if Kalio agrees or not.. Really, it's not a popularity contest, but a personal decision based on all aspects and options presented.. It amazes me how the person accusing others of fearmongering, is actually the person instilling the most fear? Telling people what to do and how to do it, and when to treat, and when not to treat, now thats scarey!!! To tell people that supplements and alternative options do nothing, and to instill the fear that they are pressumably harming themselves by following others advice if it does not come from their Dr, or I guess Kalio's, Now that is scarey!!! Most Dr's are there to make a living, not to cure.. They are there to <strong>treat</strong>, not to heal!! Most have only had a 30 minute powerpoint presentation on the treatment protocols for HCV, or read the projects in knowledge PDF, just as most of us have.. Hell, most of us have more related trials and studies on HCV saved on our harddrives than most of our Dr's combined..
Information members give here is not just "ancedotal", not just opinions so to speak.........But REAL life first hand experience. If a study or paper is archived for reference on "long term sx's from interferon", who do you think they will poll? Who do you think they will come to for the material? Do you think it will be a round table of Dr's, or a survey from patients such as the members above who have experienced them?  

Thanks Chev, you are one of the folks I was referring to when I spoke about coming back here and giving back after tx.  Even after we achieved SVR, we came back to share. Paying it forward . . . It's great that people can express their opinions and experiences here.  What's not okay is having our integrity questioned.

-cbee

Kalio: I am wondering where you get the information that when VX950 hits the market that it won't be used with Riba?
------------------------------------------------------
Never said that. As you'll see from my words below I was giving TWO Scenarios BOTH of which are currently being tested in Europe in the  PROVE II trials. Here are my words from the previous post:

"So whether the protease inhibitors be used with peg and riba, just peg, or alone -- 12 weeks -- at least to me -- suggests less sides, both short and long term, than the 48 weeks plus many of us geno 1's do."

The link you want is here:
http://www.vrtx.com/Pressreleases2006/pr052306.html

I suggest before you become so adamant that such and such does or doesn't exist you at least do some homework. As CTON suggests, riba was never considered to be a critical element in the mix but because of a number of issues, including FDA approval, they included riba in all the U.S. trials. If the European non-riba arms pan out, look for it to be dropped from some of the U.S. trials faster than a hot potato.

-- Jim

thank you all, everyone be well.
To those who are clear and still suffering, hopefully you will find something to help. Wasn't it Chell who said reiki was helping lessen her sides from tx?

How are ya? I am curious to start a thread that asks who would stop tx early based purely on a 3a (can do 1's also - some adjustments) showing clear at 4 and 12 weeks so we don't ingest the poison any longer than we have too. I guess more than half would continue tx in order to achieve SVR even if they felt there might be long term sides. Botton line our choice is take the Ribavirin/Interferon for the duration of the tx to maximize the probability of success and then worry/consider long term sides. It really is a SHITTY choice the more I think about. I guess at least we have that choice. What choice would you make given the scenario....I think I already know.

I hear ya loud and clear! It really is "decisions, decisions" now that I'm clear at 4 and 12 weeks. When I told the Dr I may quit,(I am not giving up people - I just think I may have achieved SVR and feel why continue if not needed. We all know these drugs are bad for you) then and only then did he suggest lowering the Riba from 1200 to 800 or 1000 daily. I like chevy felt why cut the dose that got me this far if I plan on continuing on. I can plough thru but it ALL comes back to long term sides - that's all. If we know there  are none, I would simply fight thru the 24 weeks. Meanwhile I'm still fighting and taking my poison like a good little boy.

My 2 cents on Drs' (hepatologists/liver drs only) opinions on long term sides could include the fact that they focus on the liver and in our case Hep C. How much concern do that place on other issues that are health related but again not liver related. This is not their primary concern, their primary concern is ridding the virus which they have proven to be able to do. Do we come back and visit the "liver Dr" 2 years after tx because our lungs or stomach hurts??? Probably not, so the hepatologist that once treated you may never hear some of your long term sides. No I didn't just make this up - purely conjecture LOL!!!

Much love to all of you!

Thanks for all the info. It looks positive for a better tx regimen in the future with many companies vying for a shot at it. I hope they are right and the Riba can be eliminated eventually.
Nice to see you. Hope you are doing well.

I checked in, and thought I could help some in the drug development area.

1. VX-950 is being tested in Europe WITHOUT Riba. The company is not convinced riba adds much, as just 950 and IFN got 5.5 logs in 2 weeks anyway. In fact, and this is just my take, in the study they got 12 out of 12 neg. in 28 days, but 1 relapsed while on IFN/Riba maintenence, it would appear (to me anyway) that 950 was needed longer, and riba did not pick up the slack. Of course, patient 12 might have virus resistant to IFN for all we know.

2. Resistance: VX-950 does develop a resistant strain, the A156T strain. 950 does render it less fit. My guess is, it has not been a major problem, and A156T is sensitive to IFN anyway.

3. NM 283 could have a problem if it gets tested with riba. Both are nucleoside analogs, and Piper Jaffrey notes that they might have synergistic GI side effects. No one wants riba included, and even if the next gen of drugs are approved with it, I wonder if some might opt out of it anyway. I would.

4.ITMN has a PI that preclinically, is supposed to be much better than 950, and does not have that mutant strain issue of A156T. Maybe a poss. future combo? Way too early to speculate.
What happens in the clinic is an open question. IMHO any new therapy without IFN would right now need to be a combo of new drugs, not necessarily 1 alone.

5. VRTX has a second gen. compound that is 2 years behind 950.
Companies do this because the first to market is rarely the best over time. They can learn a lot from the first one, and improve on either liver concentrations, dosing, etc. Not much has been said about this, but they are working on it.They have since said this publicly, but I pretty much new it based on this exchange with the company I had a few months ago:
Me: "Is VRTX working on a next gen to 950?"
VRTX" "We have an active and productive drug development program". I saw that as a yes, having talked to various companies for many years, and knowing their language.

6. SGP has a PI, and they hoped to get into p3 later this year, but I doubt that will happen. They recently added a higher dose to their p2, and I don't believe preparations are in place for a p3 that soon anyway.

7. BMY has a PI. A privately held biotech has a PI in development. For what we do know about drugs in development, there is a lot we don't know. But, the next gen should certainly lead to much shorter tx times, which hopefully will lead to less long term side effects.

Enough already, Kalio.  I sat by while had the nerve to question our credibility -

"These "long term " side effects that people claim are from tx are just that, claims. You do not know if the people having these problems had them before treatment or if they appeared due to their being middle aged or if they are somehow related to the treatment. You do not know if the person making the claims is now using alcohol or other medications or eating poorly or is overweight or taking other drug therapies . . ."

Now I'm just tired of your glorifying what your doctors say as gospel and putting down internet forums.  HELLO, YOU ARE ON ONE!  If you feel like all we have to say is bs then why are you here?  

We are here to share experiences and to educate and be educated as to what WE are experiencing.  The frikin doctors didn't do the treatment - we did!!!  Please enough all ready!  So many of us have been here for years, coming back to share with others - to give back because we have truth - which we have all been desperate for because Hep C has been treated as such a "dirty" disease and because we don't always get straight answers from the doctors.  A lot of us don't talk about it except here where we feel safe to open up about our experiences.  

Please if you can't respect us for our truth then please head your doctors' advice and get off this forum.  If your only need to be here is to defend what YOUR doctors say about the tx I for one heard it all before in other doctors' offices as I'm sure others here have too.  This is a patient-to-patient forum.  I shouldn't have to defend my tx issues, post sides, etc. to you or anyone else here.  

-cbee

I said if a person is choosing not treat due to fear of side effects from current meds available they should know that the current drugs in trials that you all are referring to, the protease inhibitors or VX950, are in trials being tested WITH IFN/Riba. You can not then change the protocol and release it to the public WITHOUT IFN/Riba unless and until trials have been done on VX950 WITHOUT IFN/Riba.
Maybe someday they will test it as a stand alone drug, but that is not what is in the pipeline now, what is in the pipleline and being tested is VX950 AND IFN/ AND Riba. There is a trial slated to begin testing w/o Riba in Europe, but that has no bearing on those in the US because until it is FDA approved it won't be available to us here. The trial for VX950 w/o Riba hasn't even started yet. It is not conjecture, it is FDA regulation.

Right. I do believe in the axiom the further you fall the harder you land. I started treatment as a 58 year old who felt and looked in his 40's and ended up as a 59 year old who felt and looked older than his age. Hopefully, there will be some reversal but the mark has been made. For those who say about the protease inhibitors -- but it's still the same ole peg and riba mixed in -- I say, yeah, but hopefully for not long and in the meanwhile hopefully for 12
instead of 48 plus weeks for some of us.

Good point and very logical. I did experience anemia during the first twelve weeks because of the ribavirn as well as gastro problems. But my skin, sinus and chronic infections didn't start until after week 12. I can only speculate, but my guess is that if I only treated for 12 weeks I wouldn't now be experiencing what I am post treatment.

12 weeks is already accepted by some as a viable route for geno 2's and 3's with RVR. Hopefully, the Vertex and similar trials will show it to be a viable route for all. So whether the protease inhibitors be used with peg and riba, just peg, or alone -- 12 weeks -- at least to me -- suggests less sides, both short and long term, than the 48 weeks plus many of us geno 1's do.

If people are lead to believe this new drug treatment is a stand alone tx and in reality they will have to take it in addition to the current drugs, they need to be aware of that and not think INF/Riba won't be a part of the treatment protocol when and if the drugs do hit the market. If they are trying to avoid side effects from IFN/Riba by waiting, they need to know IFN/Riba will still be a part of the tx with the new drugs. Even if the treatment times are shorter, which we don't know yet, it will be an add on to tx at this point. It hasn't even been tested in trials w/o Riba.
It is a major health decisison to tx or wait and if the only reason they are waiting is fear of tx sides, waiting won't allow them to avoid the current tx sides, they will just have another drug to add to it.

I am wondering where you get the information that when VX950 hits the market that it won't be used with Riba? The trials are being done using Riba and Interferon so the treatment data is based on VX950 used with the current approved tx, IFN and Riba. I read fast track status was granted based on it being in addition to IFN/Riba which has already been FDA approved for the treatment of Hep C. In order to have the treatment approved w/o Riba they have to run trials w/o Riba and go through the regimen of approval without fast track status don't they?
Do you have a link to this info that Riba will be eliminated?

Just another two cents here.

What about the member who posted about her mother years ago having endimitriosis and docs saying it was in her head?  Was she smart for taking their knowledge and experience as truth?  Or docs dx'ing IBC (inflamatory breast cancer) as bug bites?

What about my father who kept telling his docs there was something wrong in his throat for four years, being told it was all in his head and when they finally got around to checking it the doc came back in crying to say it was too late.   He died a few years later.  Would he have been wise to take their word as gospel or smart to keep complaining?

What about me all those years I kept complaining I was oh so tired allll the time (and other things) and being told I was lazy or just looking for a dx?  Would I have been smart to stop looking for an answer?  Sorry but we are talking bout my answer right now and it is a very real thing.  Might not have been proven all those years in the past but we all now know it is very, very real, then and now.

I believe anyone who puts their health entirely in the hands of a physician is foolish.  Listen to them, gain from their knowledge, training and experience but don't hand your life over to them.

We will never know everything about our bodies and our health.  History has proven that.

Gonna be quiet now.

miss

Just for the record, you are not in a positio to say "what I know"

Doctors "facts" and opinions carry more weight with me. They have a medical school degree and a heck of a lot of clinical experience to back up their opinions. Educated opinions trump the opinion of others when I am making a decision about my health.