How many feel WORSE after 6 months on TX?

[wyntre9]

Hi everyone,

Well, I'm trying my best to be patient and accept the SX as a temporary condition which will, hopefully, disappear when TX is finished (44 weeks from now) but I've been feeling terrible for the past 3 weeks.

I keep trying to tell myself it's coz of the stress of moving, but this is the first week since starting tx December 23 that I didn't have a relatively decent day on Thursday.  (I do shots Friday).

The past two days i haven't gone out of the house; nausea, dizziness, feels like a fever, chills, weakness, headaches - I had bloodwork last week but still don't have the results - hgb did shoot up 5 points from 11.4 to 16.4 in two weeks - not due to see Dr. until August - figure he'll contact me if there are problems with the labs . .

My question is, how many others on the 48 - 72 week TX have felt WORSE after 6 months?

I thought SX got easier as you go on.  For me it seems to be the opposite.

Anyone else have that experience?

Thanks all for responding.

Wyntre

[meki]

Yeah - the brain fog - the lack of the ability to concentrate for me is the worst.

I'm a police dispatcher - I HAVE TO REMEMBER shtuff.

I mean - sending a guy to a crime --- what? Where'd he go? OUCH!

But I compensate by sticky notes... And I freak out half the time.

I'm getting better - but the boss will tell me to do something and I just can't remember it... Or.. WORSE...

I'll be sitting there staring at the pile of papers --- and it's 2 hours later.

And the pile hasn't moved on it's own.

And I KNOW I have to do it... But I just can't remember to lift up the top paper.

LMAO -- you think I'm kidding? I'm soooo not.

And it's scary in that twighlight zone kinda way.

But - on the plus side... I think they know that I'm going through some rough times -- and they know when I clear - I'll be much better.

I don't come to work on the days I can't get out of bed... And while those are getting farther and fewer inbetween... I will NOT be responsible for killing one of my guys out there.

And sometimes - I'll be typing something and I just can't... I mean ---- CANNOT remember what point I was trying to make.

I just want that part to go away.

I can handle the achy bones... the pain in my muscles - the headaches... the excessive bleeding (menstrual) --- I can handle the cramps... The fatigue and exhuastion.

But I can't handle my mind going.

That bothers me more than anything.

But I believe... Honestly believe --- this will pass.

I have to.

Look at others - it's passed for them...

It will pass for me too.

I just have to have patience. And remember (what?) to wait... Cause it will happen for me too.

So there - we're all miserable with you... LOL!

Hugs - and know that a positive attitude makes a world of difference --- even if it is a positive attitude with a lopsided grin.

Meki

[wyntre9]

AND you love to jump in even when you DON'T know the answer!  *LOL*

You DOOOOOOO know I'm kidding, right!   How are those red wings (or were they black)?  

Venus (the amazon) is dropping her primaries now - green, blue, aqua and yellow. -

Meki,

so sorry, i forgot - I really am brain dead these days - i remember you posted about UND  - just wasn't (capable of) thinking.

wyntre

[meki]

Thanks lady!

Actually - not last Fri - Friday before - Doc fired me - 4th month post TX and he said I'm SVR (I was UND at 2nd or 3rd month of 24 weeks) so total of 6 months UND to SVR for me... But I'm very lucky... if you can call it that. Type 3a.

But yeah... for awhile I thought I was nuts - up days, down days, sides from every angle - but now I realize that the drugs I put in my body to make me SVR - well ---- they make the sides... LOL! Kinda like Pancakes and Syrup... they just go together... and you never know which way the syrup is gonna run.

Meki
PS. Wishing you the best.

[ladybug52]

I love to jump in when I know the answer! She's 3 months post and is UND!
Bug

[wyntre9]

yeah, the Dr. grudginingly and in a whisper admitted that such a big spike in HgB COULD indicate polycythemia and when i made him spell it for me he basically implied I shouldn't look it up online and that's what he was afraid of and that's why he hadn't wanted to TELL me but i convinced him i just loooooove these multi-syllabic words although my all-time forum favorite is still . . . . drumroll. . . .
idipathic-thrombocytompenic-purpura!


I wish i knew latin.

Anyway,  of course i researched it and found out it's a bomne marrow thing but the Dr. was right - the hgB was either a temporary glitch or I still think it might have something to do with altitude change.

And DON"T worry about ME or anyone else, PLEASE!!!!!  i mean, i appreciate it but  I don't want YOU to have ANY anxiety or discomfort!

meki,

yeah, misery looooves company!  *LOL*

And i do sometimes feel I'm losing my frigging mind with the ever-changing SX. . . .

What week are you on?  (sorry, i forgot).

wyntre

[meki]

ROFLMAO!!

OMG - this had me cracking up:

" hearing that it never got easier for you is perversely comforting. :)"

Yanno - if it wasn't for the boards and people talking about their SX on and post TX - I was thinking I was a hypochondriac... That something really was wrong with me.

Wait... I mean something was and is wrong - LOL - but not that I'm nuts.

Hang in there - and much good wishes.

Meki

[dperry10]

Glad you went to the doctor and found out you had an infection.,   did they give you antibiotics ?   If so. I hope they work for you.....see Grandma's post about taking antibiotics on treatment.   It did seem to me the Zpak did not work as well for me as it usually does.   He gave me that in April, and I still have conjestion in my chest.     So I go to see him on Tuesday, and he may send me for a lung scan.   Said a month ago, if not cleared in 2 wks..  So  I may take the mucinex this weekend and see if I can clear it up.    I also gotta get him to fill out a form for the DMV so can get a handicap sticker to use for the Football games.  We have season Bucs tickets and we park 2 miles away.. I cannot handle a walk down the street, much less 2 miles.  He wrote a note out on a prescription for me for it, but the DMV needs his ID number too , so he has to fill out this form.     I am doing ok this week, just the fatigue of course, but stomach has been a mess for 3 days.   I had to run to bathroom about 4 times today..     Tonite I am going to bed early.. we have a game at noon tomorrow ,.. Tampa  bay storm arena ball.      So need some rest before that game,   guess I will do my shot early tonight, and go to bed.   Its 6:43 EST now and I feel like I could go to sleep now, but will wait till Mike gets home..  Well I hope you start to feel better soon.   and have a good weekend.
I really think the Neupogen is whats messing with you.  

[wyntre9]

Thanks you two.

I finally started feeling better around 3PM, just in time for my next peg shot!  *LOL*

NP gave me antibiotic ear drops and oral ones, augmentin.  i've been on every antibiotic out there except the ones that TB guy is on *LOL*, and I realize antibiotics aren't great while on TX but, h*ll, i spent the past 20 years on 'em and I'm still here!

Seriously, the only other thing I can do is a 5 hour round trip to my jersey ENt and let him drill out my left ear again - he said last time that without having done that the drops wouldn't even have a chance of getting to the infection.

Since i don;t have an ENt here I guess it's better to do drops and pills.

elaine, how's nick these days?  how are you/

DP - have a great time tomorrow and take it easy with that walking - there's no way i could do that trek - aall week i haven't even been able to do my 20 minutes on the wimpy gazelle trainer.  yesterday i tried but fel t like i was goinna pass out after five minutes.

have a great weekend,

wyntre

[ladybug52]

I'm so glad that you feel like cr@p for a reason! So now that you've adjusted to the altitude change, your hgb is back to normal==LOW!
This is like good news, bad news, but I'm glad I did all that worrying about polycythemia to protect you from getting it:)
Hugs,
Bug

[wyntre9]

i did go to a Dr. this morning coz i felt even worse than yesterday and i started getting scared -

problem is i don't have a Dr. here so i had to call a couple of neighbors, get referrals, call insurance company, call clinic, bladhdeedahdahdah -

Not only do i have another ear infection - (like the one a couple of months ago that made me feel almost the same way - DUHHHHHH) but my HgB DROPPED back 5 points from 16.4 on June 9 to 11.4 on June 22.

So i suppose that explains it, as well.

And when i look at the calendar, i realize i felt TERRIFIC the first two weeks i was here, from May 26 to June 9th - and it just so happens THAT time coincided with the 5 point spike in HgB.

think maybe it's related?  And now, after feeling like SH** for 2 weeks, it turns out the hgB crashed again.

But it's also the ear infection.

just seeing the most recent labs and having NP check my ear and verify another infection makes me realize i'm not as loony as i feel -

i got scared coz i don't even know where to go in case of emergency.  but the np is affiliated with a Dr. who's on staff at the local hospital ten minutes away so i feel calmer . . .

DP,

You know, maybe you're right about the neup - WBC are back up to 2.9 (still low) and ANC is 2, normal for the first time in 7 months!

I may not do the neup this weekend . . .

wyntre

[CrazyTrain]

"slings and arrows" LOL - couldn't have put it better myself.

I'm not making any claims that it "cured" me nor that it erradicated the Hep C 1a virus mind you. I will say I'm quite certain it played a role in my rejuvination (for lack of a better term). Just the thought of taking something which was supposed to make me feel BETTER had a pleasing ring to it.

Anyhow, the alts. I used were Natcell TML, Lipoic Acid, Milk Thistle, Dandelion root and Selenium. The 1st one is unGodly expensive.

I will add that when I would run out and couldn't afford that expensive stuff my Edema would return within 4-5 days. My son called me Fred Flintstone LOL.

I knew I couldn't afford for long term so I started weening myself off of it after 5 months or so. Edema still comes back at times but I can handle that.

Couple of other things to add: 1) I found out about the Hep C 1a after suffering an esophageal varices bleed which sent me to ER followed by 4 days in ICU.
2) My base line VL was EXTREMELY low 8,700 or so.

Hope the natives are still sleeping LOL.

[wyntre9]

Thanks guys,

i just got up and I feel even worse today so i broke down and thumbed through the yellow pages and made an appointment with a GP for 11AM.

It's hard coz I just moved and my gastro is now 2 hours away . . .  but I have to get some medical advice.

I think I may have a recurrence of a very bad ear infection/sinus infection - guess that can cause all the sx

Thanks again for your advice.

i'm am just so sick of going to doctors . . .

will post later about the results.

wyntre,

[orleans]

Hey, If you are willing to "suffer the slings and arrows" tell us what "alternatives". thanks, jerry

[NYCMark]

Hi Win,

I certainly do understand how you must be feeling.

I have the same experience as you are having... feeling much worse as treatment progresses rather than getting used to the drugs. I'm doing the 72 week thing, and have felt increasingly worse since about week 44. I used to have 3 or 4 good days between shots; now they're all bad, some much worse than others. I have much less energy each afternoon than I used to, and continue to lose weight. More heartburn now, and fewer menu choices please me. At lease the labs are still OK about the same: not normal by a long shot but stable) with viral load at UND. But it's REALLY hard to continue this stuff feeling worse and worse with 3 months left of treatment.

Feel better!

Mark

[dperry10]

Read zazza's reply as well.  towards the end of her comment to you, exactly what I said.    Mine are in the Low range too, but they do not give that until your  Absolute Neutrophils drop to around 500 or below, and some lower than that.  I really think the nueproen is what is messing you up.   Your levels did not seem low enough in the things that make that decision,    I asked you months ago about the Neuprogen , it did not appear you needed to be taking that med, with the levels you had.  You may want to check with your doctor or do some more research on it.   I bet you find they can cut you from that and you may start to level out.. Higher Platelets is a good thing.   My WBC was 2.7, and RBC 3.01.  But has been down to 1.4, when my HGB also dropped to 8.1.   but still only Procrit for a rescue drug, as these levels do go up and down.   But those are the not the ones that matter.. its tthe Neutrophils..   Even though those numbers show as L or alert on your lab, so does mine, and neither doctor was concerned with those numbers.

[zazza]

Wyn,
You know I am just 6 weeks ahead of you in treatment. Since week 17 tx has been easier for me. Okay, I have bad weeks and bad days - especially the first 2 days after the shot. Then the last 2 days before the shot are pretty good. Occasionally I will have an entire bad week. The first 16 weeks I hardly got out of bed, was very paranoid and had no energy, only left the house when I had to - to cross the street to get to the grocery store. But after that it is as if my body has adjusted to the anemia and the drugs, it is doable although I do not fare well of pressure and demands. Maybe I have just been lucky not to have too much sx.

But I think the suggestions you got above are good. You know I do no rescue drugs. What are your ANC and WBC counts? Are you sure you still need neupogen? And what is it with the high altitude symptoms that Ladybug writes about? These are the 2 things that are different between your and my treatment. Can you look into them and see if they are the reason you feel so bad?

Zazza

[CrazyTrain]

Cheer up Wyn,

Did I tell ya that I got Paris Hilton's autograph the other day ? ... Stupid restraining orders ! :)

It's ok though I guess, because with her it was all me..me..me. Like "Get away from me", and "stop following me" LOL

Heck I thought she really liked me, she said I reminded her of a famous television star. Who the heck is Mr. Ed anyhow ?  

Hope that helps - sometimes laughter is the best medicine.

[BThompson4]

I finished one year today, and have 20 weeks left.  Have not done any rescue drugs and have mostly had no trouble sleeping (I thank God for that every chance I get). No rescue drugs, with neutrophils running between 1.7 and 2.2 and hemoglobin almost always in the mid 11's.  Get winded very easily but I love the clarity my thinking has had since starting treatment.  Encephalopathy has always been my worst liver disease symptom (including an eight-day coma), and it is great to be able to have the concentration to think without struggling.  For some reason, weeks 30-40 were just horrible in terms of pretty frequent nausea and nearly zero functioning of taste buds (had very swollen salivary glands in that period), but that has all resolved for now.  I take about three 500 mg tylenols for two days after taking 150 mcg peg-intron and that is enough to militate a lot of the speedy effects of the peg.  When the nausea and headaches hit, I invariably take a nap and almost always feel better for a few hours afterwards.  Fibrosis went from F2 before treatment to F0-F1 ("no significant fibrosis") at week 36 biopsy, so I will have at least the last 36 weeks of UND with very minor liver damage, something that should make it more difficult for the virus to hide.

I agree that the fatique is cumulative, but you get used to it after a while.  It really is a day at a time task getting through treatment.

[ladybug52]

Aren't these symptoms the same as the symptoms for polycythemia, mixed in with tx side effects? Hopefully things will getter better when you adjust to the altitude and lower 02 levels. Call your dr and let him know you don't feel well. Maybe he can tell you what to do. My daughter has asthma and got altitude sickness the first time she went to colorado. They gave her oxygen.
Sorry, can't answer your question personally, but if I had done 6 months of tx, I'd probably be locked up somewhere for attempted manslaughter, or a paranoid disorder, or both.
Hugs, hope you feel better soon. (Definitely sooner thatn 6 months from now)
Bug

[wyntre9]

I HATE when that happens!

Sometimes the woman who draws blood hits the wrong spot and my arm is multi-colored for up to a week after.

At least you won't have to go to the lab too many more times.  :)

wyntre

PS - I'm not crying much - probably coz of prozac - but i am BRAIN DEAD!

[wyntre9]

Thanks for posting your success story!

Congrats!

I need to hear there is life after TX!

Strange about your fingernails - hope that problem has gone away.

wyntre

[orphanedhawk]

       I felt like that just a few short weeks ago. I didn't want to see or talk to anyone for fear of losing it. . . again. The worst , besides my blowing up at my sister, was at the lab when either I moved or the phlebotomist messed up. The needle came out, my blood was pouring down my arm, and I sat there crying!!!! And she wasn't done and still had to stick me again. I've gotten aggressive since then. I tell them right off to get a small needle but why with all the veins in our bodies can they only stick our elbow pits?
  
     Just take it day by day, and be happy when you get the good ones.
  And thanks, yes, its 1 more down, 2 to go!!  

[relentless1]

Did 48 weeks pegasys and riba...full dose....typical sides...it didn't get worse as time went bye....wierdest side was fingers spliting near nails....dermatoligist said use crazy glue which really worked.  Splits healed from inside and pushed out dried crazy glue...very cool.  get three year post treatment blood work next week.  Hope all of you get there too.  There is life after TX.  By the way...just read about viropharma receicing fast track status for phase two testing of their new HVC drug.  Hope you all have a great summer and hang in there...

[wyntre9]

'My liverhead said the effects of tx were accumulative."

That's a relief to hear!  *LOL*

"They were getting worse until my dosage was changed. Honestly I found the neupogen harder to deal with than the interferon or riba."

I can't tell which drug is provoking what reaction.

"I think you may need to talk to your doctor.
You should always have access to your doctor and to someone who can give you your lab results. I have found with my guys that no news is good news. When the warning lights go on, I get a phone call."

Well, That's what i was thinking about the HgB, after freakin about it last week.  Dr. didn't seem too concerned other than to tell me to redo the labs and since then i haven't heard.

I'm getting to the point where i don't wanna talk to anyone (like crazytrain) much less a Doctor!

I'm just a little disgusted with this but as long as i know my SX aren't that different from others, which you all have strongly reassured me about, I'll just keep going and hope for the best.

problem is my Dr. is now 2 hours away and i don't have a PCP where i am now. . .

Oh well, I just needed to touch base with fellow TX warriors, as Cruel would say.

And, BTW, Hawke, An early congrats to you!  Only 3 more shots to go!

Wyntre

PS - in the state of NY, I can't get lab copies UNTIL I get a script from the Dr.  Haven't gotten around to that, yet, as i never had to do it NJ.  Evidently the regs change from state to state, or at least from NJ to NY.

And like I said before, i don't feel like talking to anyone!  (Posting is an entirely different thing.  *LOL*