SVR and Quitting teatment early

[cba51]

I on week 35 of 48. Been UND since week 8. Lately the possibility of developing an autoimmune disorder has me concerned based on some strange sx I have been experiencing that may correlate to RA (no family history of RA) . I am not interested in cashing in HCV for some chronic ailment that will lower the quality of life post tx.

My question is has anyone here  quit treatment early and attained SVR or knows of someone who has?

Thanks

Big Al
HCV geno 1A
Stage 4 grade 3

[CrazyTrain]

Thank you cba,

Good luck on the treatment and long term SVR.

Gotta love your "Force Fed" description, I couldn't have said it better myself. Led down the path like a herd of cattle and the branding iron is HCV-PEGINT/RIBA 48WKS.

But you have to be a good looney and stay on the path LOL

Again good luck to you

[cba51]

Congrats!!

Again makes me wonder why there are no studies in which people who are UND at 4-12 weeks
are purposely taken off treatment and then monitored for SVR. It pisses me off that you are force fed the line well you have to continue the entire 48 weeks or the Virus will return. O really?!?  Show me the freakin' data that supports that. I suspect there is none

If anyone knows of a study I'd like to read the data.

I'm going to finish my treatment 'cos I've come too far.  But  Hep C patients should raise a collective cry for at least some studies instead of buying into the Med professions bill of goods!

[CrazyTrain]

HCV-G1a -Stg 4  Hospitalized in ICU on 4/2006 from variceal bleed episode...thats when I found out I had HCV.

I managed to find a Dr willing to put me on PegIntron/Riba which I SUFFERED through 8 weeks of the 52 prescribed. (Cure seemed worse than the disease.) Dr made me discontinue due to deteriorating labs - However tests also came back negative for the virus.

I continued to have virus tests (RNA PCR) every 3 weeks or so and figured I'd restart Tx if virus returned. Logic being, HCV virus doesn't gain immunity to Tx and who the heck wants to torture themselves unnecessarily.

It's now been 1 Yr SVR  

[nygirl7]

Getrdone- I'm also on my third round of bronchitis. The combination of the med sx, the bronchitis along with riba cough and anemia cough seems unbearable at times.


It's no fun but all the others are right hang in there if at all possible you really haven't been UND for that long.

I just wanted to say that I did develop an autoimmune problem that destroyed my thyroid at about week 30.  It might have reversed if I quit treatment but fortunately I kept at it and am now SVR.  It's worth it to keep going if you can.  You don't want to have come THIS far and then throw it all away, not for anything if you can help it.  Good luck.

[merryBe]

I think you have to weigh what the RA is doing. severe RZ is nasty, but some RA may be tolerable considering you've come so far. Like with me, one day my teeth will ache, another day someone jabs a needle in my ankle, and I can't pyut weight on it...next day it's gone,and somewhere else asts up, can't open my rx bottles...just one little agrivation after another.
thisis just the interferon not all going to the liver...and maybe being a little too zealous elsewhere.
when it gets to where you are bed ridden and can't move or catch your breath, it's gone too far, but if you mean some joint discomfort some of the time....well cartilage can settle and repair too.
try glucosamine/condrotin, and maybe a mild rx, but try to hang in with tx....much less chance of relaspe if you do and a chance for you body to heal everything else again when the liver stops failing, right?

[pigeonca]

For whatever it's worth, my autoimmune problem seems to have subsided since stopping tx.  They began several years before I was diagnosed with hcv, flared up terribly during tx, and afterwards gradually ceased.

I have a hunch that one's own naturally generated interferon may be the cause of the autoimmunity, and then the manufactured interferon adds a double whammy.  If that's the case, then the question of treating or not-treating becomes even more confusing.  You're up against it either way.

[CMcH]

The symptoms you mention don't sound like RA. I have been DX w/RA factor and my thyroid has been destroyed from an auto immune attack many years ago. I haven't even started TX yet! I believe you can get the auto immune reactions from the Hep C itself from the liver not functioning well. I am worried that TX will exacerbate the above problems and probably create more. It does scare me to hear about SVR continuing to have sides well after TX is over.

[cba51]

Yea I wil hang for the remainder of tx. I believe the nurse told me the PCR test were 4 parts per ml.?

Thanks.

Big Al

[frijole]

I am just chiming in with the rest of the gang here.  Your stage 4, grade 3 merits the whole ball of wax.  Please don't shortcut early.  If you had less inflammation and less fibrosis, maybe -- and only maybe.  How sensitive were your tests, by the way?  I tested at 40 IU at week 12, dis 56 weeks and relapsed.  This virus is a mean one.  Hang in there.
frijole

[cba51]

Excellent input form everyone. In the multitude of counselors there is safety.

I will get a referral from my dr. (Gastro by the way not a Hepatologist) to see a rheumatologist and  get tested for autoimmune markers.

Getrdone- I'm also on my third round of bronchitis. The combination of the med sx, the bronchitis along with riba cough and anemia cough seems unbearable at times.

The path of least resistance (ending treatment early..and getting SVR) looks good but probably not the best choice.

[pigeonca]

First of all, for anything autoimmune, you must see a rheumatologist.  He or she will give you blood tests for various autoimmune markers, the presence or lack of which may or may not be meaningful.  (They're like allergy tests, which often show you to be allergic to more things than you actually are - ie. they're over-sensitive, but helpful.)  Actually, your primary or your hep doc can order these tests.  

Unless you're in terrible pain, or they fear you'll do more damage to your body than having hep c will do, there's no reason to quit.  I had autoimmune skin problems (morphea, which is cutaneous scleroderma) which were becoming disfigurements  - though, thankfully nothing I can't hide in clothes for the most part.  As a geno 2, I was supposed to do 24 weeks.  Was UND at week 4 of tx, pulled off riba after 12 weeks, had one more week of INF for a total of 13.  I just had my 6 months post blood tests.  Am seeing hep doc tomorrow morning - very anxiously awaiting that visit.  This will let me know if I'm SVR.  Since my ALT and AST have been normal since week 4 of tx, and remain so, I have I hunch they're gonna give me good news.

BUT cutting tx short is incredibly risky, especially in a geno 1.  Were you tested at week 4?  If UND then, I think you might take a risk, but only if you really can't stand it.   Waiting for word of success or failure is anxiety provoking - to say the least.  Hard decision to make.

[alagirl]

Also, Go get checked out.  What you are describing could be anything from gall bladder issues to an ulcer to acid reflux.  It could be many things, most benign, a couple serious.  Go get checked.  Not everything that develops during tx is hepc or tx related either.  When you have a health prob whether a hep c'er on or off tx or not, its always best to get it checked out.

[alagirl]

I am developing RA, and it is bad for the first three to four days after my shot each week. I don't know if it will develop into a permanent thing after tx.  My personally philosophy though, is that I can live with RA, but I can't live without my liver.  Of course, my mom has RA and we both have migraines, so pain is just kind of something I deal with (right.  That's utter bs, pain is something I take meds for ;)

But bottom line for me, I'd rather deal with a non life threatening auto immune issue than keep hepc.  

NOW.  There are others who may differ with this point of view.  This is just my own way of viewing it.

[geterdone]

Al, I am one week behind you and can certainly understand you’re thinking at this point. I have been pondering about this myself quite a lot lately. I been und since week 8 or before, don’t know because week 8 was when I had the first prc. Went from 4.7m to 0 and have been und since. I’ve whacked out my thyroid and am on meds for that, in the middle of my third round of bronchitis and am on avelox trying to get rid of the crud but have gotten this far and with 16 weeks left to go, I’ve come too far to short change myself no matter what these drugs has thrown at me. Yeah, there have been some lucky ones that got away but do you feel that lucky at stage 4 grade 3? I don’t at 2/2.

You can do it! Just keep moving forward…

jasper

[veggie]

merryBe's comments are right on. Do you have a liver specialist (hepatologist) or a gastro. The former know a great deal more about this illness. I hope you feel better soon. I know you will after 12 more weeks. Take good care.

[merryBe]

you haven't been UND that long that quitting would make good sense, but joint pain is no fun, espesially RA.

a are you hydrating EVeRY day.2-3 qts. and 2 what have you asked for to deal with inflamation.
the ra coud settle down after tx..ots possible, while destroying virus cells you immune sys forgot.what not to attack and need settling down..there are things that help that.

maybe a reduction in interferon only would help...but continuing with RIBA
these are all things you should be discusssing with your doctor NOW>

[veggie]

Please do not quit your treatment when you only have 12 more weeks to go. Ribavirin messes with your head and makes you imagine all sorts of things. It will go away after you are finished in 12 weeks. I am 65 years old and I completed 51 weeks of tx recently. I'm genot. 1a and stage 3. I have no RA nor diabetes. I finished tx just 6 weeks ago. I feel very good now, better every week. But my memory is a little slow. It will come back in time. Please finish your treatment you won't be sorry.
What made me finally get tx was Dr. Cecil asked me if I wanted to live another 20 years. I said yes. I was just getting a granddaughter. You will not clear the virus unless you finish your tx.

This is GrandmaA I could not sign on with my name and I could never get the password right so now I'm veggie.

[desrt]

I'd hang in there, at least until I had a chance to talk to a doc about RA factors and what might be causing your sx. Easy for me to say, I know, as I was g3 and wimped out at 23 weeks, but you've got a lot of time invested and some serious liver damage happening.
Good Luck with your decision.

[cba51]

It's a burning sensation that started on the right side of my rib cage.   It is not constant . It happened only if I rubbed up against it which would produce 10-15 sec. intense burning.

The closest thing I can compare it to is if you had a open scrape or abrasion on your skin and if something rubbed up against it.

However when looking at my skin expecting to see an external  rash, or redness , etc, I see nothing.

While the sensitivity in the rib area has cleared I now have the same thing at my right elbow joint and left  underarm. Again no external indicators.

[desrt]

What are the "strange sx ... that may correlate to RA"? I've known people to quit early and SVR - I've known more who have gone the full distance and relapsed. At stage 4 this isn't a decision to be made lightly.