Having trouble 6 months after finishing treatment

[stella154]

Hi! I finished therapy for hepatitis c, genotype 1a, about 6 months ago.  I was taking peginterferon alfa-2a and ribivarin for 6 months.  I will find out soon if the virus is gone.  My question is about how I should be feeling at this stage.  I have extreme fatigue almost all the time.  My depression is worse than ever even though I take 2 different anti-depressants.  I have pain that makes my quality of life intolerable.  I told my doctor if I had the choice again I would choose not to do the therapy.  My doctor is sympathetic, but doesn't know what is wrong with me.  I have lost all zest for life and have to push myself to do anything.  Will this ever end?  Does anyone have any suggestions?  I can't live like this.  I am only 32 years old.  I welcome any thoughts or suggestions.

[DoubleDose]

I just think its really as simple as this:  some people experience serious damage from tx, that appears to be permanent, and is not amenable to lifestyle changes or medication...and others don't seem to experience these same after-effects.  There may also be a group somewhere in the middle that has moderate issues that clear up in a few months to a year or so.  The group with the serious medical problems from tx are unique to the treatment process, and need to find a way to address the most damaging issues eventually, through more research and development from the medical establishment.  The group that does not have these severe and lasting after effects, and the group that has not treated yet both are not able to understand the extent and severity of these post tx issues, since they themselves have not experienced them personally.  So, in the end, its tough even having a dialogue with those that are not impacted, because they really have no personal understanding of the problems.

Even if its only 20% or 30% of treaters that end up with long lasting issues, that's still A LOT of people out there, that need better answers, and at least some real, in-depth studies.  Personally I will bet it is a lot more than 20% who are having problems after their therapy has ended.  Maybe we need a site for those who are SVR and have developed serious medical problems after tx...so that their issues can be discussed openly, and their numbers can eventually be established.  If the word got out on a site like this, I guarantee you that in a year or two, you would have a crowded and voceriferous board.  I am just happy that forum members continue to speak out about their own experiences after tx, and are not intimidated by the 'naysayers' into keeping everything to themselves.  Mark my words, just as they have recently acknowledged in Cancer treatment, after many years of avoiding the discussion, HCV treaters will see their therapy with interferon finally discussed honestly in terms of long term potential consequences, and how many patients end up with permanent problems.  Its just a matter of time and ongoing reporting and documentation.

DoubleDose

[working dog]

i think its a good idea to try to cut way down on gluten in our diets for about 6 months...at least 3 months...see if you feel better...sometimes theres something in our diet we just can't tolerate anymore......billy

[R Glass]

I wish that was the case here. I get plenty of exercise (even though it causes severe pain) and don't eat a lot of junk food. After 3+ Years the Post SX Fairies still have not came.

[moahunter]

"Although I don't disagree that there may be lingering effects after treatment I also believe that people need to work at recovery, and life, to get every possible improvement.  ... America is fat and lazy and some blame many things for their sad lot in life that, in many cases, is self-inflicted. "

I agree with this. I am healthier than I was before treatment, but that is because I have decided to watch my diet and exercise. Not doing those 2 is just as likely I think to result in on-going health issues, as the treatment is (or which I have no side effects aside from a little nerve damage in finger tips).

[R Glass]

Yes, some were removed which confuses the thread because some of the posts appear to be directed to the wrong members.

[DoubleDose]

Am I mistaken, or was this thread edited, censored, etc.  Several posts have been romoved, for no apparent reason.  Very odd.

DoubleDose