feeling like i relapsed

[JAY0914]

So worried i relapsed due to symptoms lately...i go in this friday for 3 month PCR...Having the burning eyes, achy back, flu like feeling all the time, fatique, yawning alot mid day...these are all the symptoms i had before treatment  anxiety like crazy thinking the worst ...i  really thought i beat this thing with all the great results...my question is if did. relapse       .what are my options now?

[ellenc670]

Did you say you relapsed six months after completion of tx? They say if you pass six months you are probably home fee. Your saying you relapsed?

[ellenc670]

Do not think that way!!! You are bringing negative energy to yourself.!

The symptons you described do not sould like Hep C symptoms.

Keep us informed.

Good luck.

[JAY0914]

thanks for the positive words Dave...I hope your right and it is post interferon problems...i'd suffer a battle scar or two to be free of the beast..
The waiting game is torture !! should be getting that research call by next thursday..

stalion
my **** always smell the same...like fruity peebles and rocky road..lol  i lived on that during treatment.

[James10500]

Strong oder means you're dehydrated

[stalion]

                                                                                                                                     I am just curious, if you notice a strong odor to  your urine, that was my clue of relapse. I have always had this strong smell to my urine, before I was diagnosed, in 2009, i thought it was all the supplements and vitamins. I stoped all when I was on tx, and had not resumed them. I noticed after I was UND, that smell was gone, 3 months after tx the smell was back, and I thought then, it might be back, and of course at my 6th month testing I had relapsed, just an oppservation on my part Stalion

[James10500]

+1 DoubleDose

Sounds post interferon to me. Give it a few years.

[DoubleDose]

Jay, I really think you are having interferon after effects...I don't think relapse would cause these symptoms at all...I DO think your sx are very typical of what many of us have experienced after ending tx....the immune system just revs out of control on its own...and attacks our bodies like an auto-immune illness....   Once you get your negative 3 month PCR back at least the anxiety part will fly out the window, and you will feel tons better....even if your eyes keep burning for awhile.  Look up Sjogren's, and see how an autoimmune illness like that affects eyes, mood, energy, salivary tissues, etc.  Keep the faith....  my money is solidly on SVR in your case.

DoubleDose

[researchmonkey326]

The three month post treatment waiting game is torture.  I was extremely anxiety ridden until I got my results.  I really did not feel like all of the drugs were out of my system either until about that time and I had some rough days those few months.  If you combine that with your GI issues, I'm not surprised that you are freaking out.  Hang in there and try to do something to take your mind off of it all- I know, easier said than done.  Sending positive thoughts your way.

[jsf52]

Sounds like your research doctor is on top of getting you all the best treatment.  Feeling like crap drives anxiety which makes us feel worse.  We need to always to remember to take it one day and sometimes one second at a time until we get through.  Praying for SVR for you.  

[JAY0914]

went to hospital Tues night ...felt like death...they didnt find anything...plus their patient  care skills are well below par...i went to research yesterday, seen head hep doc...took my blood for the 3 month post tx Vl....oh boy... please throw a prayer this way for my results!! he suggests an upper GI endoscophy for Tues.. happy joy...been having burning in stomach / chest...but whats killing me the worst is the 24/7 flamethrowers shooting out my eyes...its driving me crazy...

[Revalation]

Try to stay positive. Over the few years since my diagnosis I've made myself
very ill on numerous occassions.

I've been sick almost since my doctor said I could treat (about a month) again.
I'm not the youngest patient and it frightens me.

Don't let negative thoughts take you someplace you don't need to go.

Sometimes with every pain I think I taking a turn for the worse and then
I find out it wans't anything...

Things will get better. Hang in there.

I will pray for you today. Everything will be fine.

Reva

[JAY0914]

you guys are all the best...thanks for all the encouragement...i go to research today to get VL test done..then the waiting game...I keep my faith in GOD and know hes in control...thanks guys

[nygirl7]

these are all the symptoms i had before treatment"  

If he had them pre-tx then they were not post-tx symptoms was my only thought, I doubt he has relapsed a lot of people feel punk during and after treament but he had these symptoms prior (although they dont necessarily relate to HCV relapse at ALL),

[DoubleDose]

But Jay's initial comment at top was that the problems involved:  flu-like feelings, achy bach, fatigue, and lots of anxiety....the colitis was a separate issue.  I still think the symptoms are very typical of post-tx or 'post-interferon' syndrome.  Its expected for most people, and goes away fairly quickly in most treaters (so they say).   My post-tx problems began about 2 weeks after ending tx, and I saw a slew of specialists over the next 2-3 years trying to sort it all out.  Net result:  interferon after effects.  Still SVR though...and approaching 10 years.  

DoubleDose

[nygirl7]

I think your problems might be the same non-hepc related problems you were having before treatment.  Just because you treat the HCV does not mean that your GI problems will go away, they could and probably are two separate things completely and totally.

Especially colitis - as far as I know that has nothing at all to do with HCV.

[DoubleDose]

Just a PS to my post above:

I think your symptoms are very much in the post-tx, after-effect category.  Your immune system has been over-revved, and does not stop immediately after stopping the drugs.....The drugs DO actually leave your system fairly quickly, contrary to what many think...but the systemic after effects can remain for varying periods of time.  The interferon makes your immune system go hyper, and that really takes time to iron back out to normal.  You are feeling the symptoms of an ongoing immune system lashing out, so to speak....it will insure the complete destruction of any stubborn HCV virions hanging out...but also will cause lots of funky symptoms...especially the extreme anxiety....fatigue, burning eyes....joint pains...etc.  They all are symptoms similar to a 'lupus-like' auto-immune blitz...and are part of the post-interferon syndrome.  Keep the faith...I bet you are good to go.

BTW, my anxiety attacks were horrendous the first year or so after ending tx.  I did not understand any of it back then, but in retrospect, I see where it all came from.  I became panicked about many odd things....thought I ate poisoned food a few times....worried about a terrorist attack for no good reason...had a number of unreasonable huge fear attacks that each lasted for days to a week...all due to the post-interferon buzz.  Also, lots of rashes, deep joint and back pains, vision issues, deep fatigue, etc.  For most SVR's, these issues should clear our fairly rapidly...or even in months.  Stay healthy, eat well, exercise, and keep optimistic!!!

DoubleDose

[Dee1956]

This is the best group of people ever!!
Thank you so much for always being there when someone needs you.

@OH I really liked your comment about the mind fretting, mine frets all the time, I get really scared about many things as I am sure everyone does
Curious Lady, you are so right about anxiety and what it can do.  

@ALL You are all wonderful and have been more help to me than any family member with the exception of my poor husband who has stuck by me through all my sx
Is clumsy on the list?...or is that just genetics?  I want to make sure who to blame. LOL

[DoubleDose]

Don't worry yet!!!  I was SURE I had relapsed after tx...my symptoms were worse after tx than before.....only to find that I was totally undetected on every interval test....3 months...6 months...1 year,....2 years...5 years...and 9 years!!!  The downside to that may be that you may have some post-tx sx for awhile...hopefully not long!  Mine got nasty about two weeks after ending tx, and have more or less remained in the 'nasty' category over the years.  

This pattern of feeling like you have relapsed after tx is very common...and many have found that their post-tx symptoms seem to have NO correlation whatsoever to being SVR!!!!  In fact, I will bet you big odds that you are indeed SVR!!!  Relax, and feel confident!  No reason to worry yet.  Hopefully your tests will confirm the SVR.  I hope your sx also fade quickly.  Good luck!!

DoubleDose

[crossroadsec]

It's ez to worry some days when you get a trigger to remind u you're treating. I can feel so good I have to set alarms for reminders, and a week later sleep 10 hours a day! Today I got a paper cut at a workshop n didn't notice til someone pointed out blood all over my papers. I'm on Promacta n waited to bleed to death internally. Lol now. But I had to work hard to snap out of it cause I had to present in front of 400 people. Taking drugs can really be scary.
Keep fighting. Fear is our real enemy.
Karen

[sandysf]

Jay,  if it is any consolation, I am going through same thing 2 weeks post tx.  I think my hands hurt at night which was a symptom pretx, my eyes are dry, i think my liver hurts.  I am sure, like you, I will SVR.. but the mind plays dirty tricks.  Don't worry and I will do the same.. keep us posted!  

[orphanedhawk]

Of course you're freaked out. Its  PTS. Once something happens to us, similar things trigger our memories. Then the mind starts to fret and . . .

I don't think that you can really feel a relapse. I didn't.
That's why hep C can go unnoticed for so long.

Stressing isn't going to help, isn't going to give you the answer and can make you feel worse.
Try to relax.

Good luck
OH

[Bali05]

Right now you are the closest to being virus free ever since you got infected.

Cheers
b

[Advocate1955]

I believe you were treatment naive, no cirrhosis, right?  Your chances for SVR with triple therapy with Incivek are really, really high.  Don't worry.
Advocate1955

[JAY0914]

sorry its just all the symptoms are exactly like i had before treatment...so its freaking me out pretty bad...ill wait and see