Aa
A
A
A
Close
Hepatitis C Community
13.4k Members
119874 tn?1189755829

More sides (thrush!) and thinking of shortening treatment for Type 3. Advice?

Week 11/24.  The sides are really getting to me:  anemia (now on procrit and anemia improved), headaches, hair loss, all the usual stuff.  And, now, upper respiratory infection (on antibiotics) and thrush (really disgusting and painful--I can barely swallow water).

Some of you seem like real experts (trihepguy, jmjm, you know the crew) and I really want your advice.  Recent research on Type 3 seems to be suggesting that durations shorter than 24 weeks may be sufficient.  I'm thinking of quitting at 16 weeks and crossing my fingers. I think it might work.  If it doesn't, my liver is in decent shape and I'll wait a few years for something better.

Stats:  Type 3a. one doc said stage 1, another said early stage 2 (same slides).  VL 16.5 mill.  Undetectable at 4 weeks (<10).  48 year old female, weight 112, in good health (or at least, I was before treatment).

Please advice this desperate woman. Thanks.

40 Responses
Avatar universal
Well we've all been there with these sides I can tell you that.  It's not easy at all - and sometimes I too feel like giving up. When I had the drastic anemia problem I didn't know HOW I was going to make it through but I would have done anything TO.

I don't know the statistics on shortened treatment for a 3 (I am a 1A and 1B) but try to keep one thing in mind - your treatment is ALREADY shortened from what someone like me will have to do and you don't want to have to ever do it again!

If you can possibly hold on - the longer the better at making sure it does not come back. But that is just my opinion.

I just don't want to have to ever do this again and I have no idea right now when I will be done so it's rather nerve wracking to say the least. I wish I had a date.
Avatar universal
Can the THRUSH be from the antibiotic? That's is the ONLY time I ever get that when they put me on erythromycin (sp) or something like that.

it might just be an every day infection and the antibiotics are causing the mouth problem?
Avatar universal
Sounds like you may have just picked up a bug.  My throat always swells when I get the bug and its very painful to swallow anything.  As strange as it sounds the only thing that has ever worked for me is steroids. Really great for reducing the swelling. If you see a Doc ask him. If it is indeed the flu you picked up those antibiotics are useless.
                                                    Ron
Avatar universal
The following study suggests that genotype 3's with a pre-tx viral load >800,000 IU/ml do not fare as well with 16 weeks of treatment, as they do with 24 weeks. This is a Pegasys pilot study.
http://www.natap.org/2004/AASLD/aasld_29.htm

As NYGirl states, for many of us side effects are not easy, and part of the treatment package. Upper respiratory infections seem common and the key to these types of infections -- as well as other sides -- seems to be agressive medical/pharmaceutical intervention by either your treating doctor or some other specialist.

That said, you always have to weigh the discomfort/risks of side effects against the rewards of better SVR odds. In your case, you're a stage 1 or 2, so arguably still have time to wait and re-group should the treatment not work.

Personally, I'd try and gut it out for 24 weeks. Certainly, you don't have to make any decisions right now. Hopefully, at week 16 you'll be doing better. also, at that point, you'll only have 8 weeks left which should seem a lot better than what you're looking at now.

-- Jim
Avatar universal
So hows your sx's been lately? Won't be long and it will be over for you. Best of luck to ya. You've earned it
Avatar universal
Hi there!
I understand your dilemma, believe me!  Sorry about the thrush.  What have they given you for it?  If you are interested, try gentian violet (you can google some info about it)  Highly recommended to help in clearing thrush, but you will be purple in the process :)  Hope you get to feeling better soon.  I have decided as a geno 2 (who was DEFINITELY doing the short course, until I had an issue with under dosing on riba) my first goal is 16 weeks.  If I am feeling good at the point, I will re-up for another month.  Then we will take it from there.  You may need to set smaller goals like that to get through this.  Either way, best of luck and I will be thinking of you!  Nice to see you around here :)
96938 tn?1189799858
Tough decisions. I think you said previously that you are a college prof/dept head with a couple of kids which I'm sure makes it in to the decision scheme.  School year ending soon? Sabatical a possibility? Assistance with kid care if you decide to continue? Good luck Algernon.  Mice are tough critters.
Avatar universal
Some new meds for my prostate are causing more upper respiratory/sinus problems.

Over the past few weeks, my difficulty in determining treatment length is weighing my increasing desire to be off these drugs (So VERY tempting) versus an "objective" assessment of what is an "optimum" (yet reasonable) treatment length -- given my genotype, age, histology, etc.

It doesn't help that a couple of doctors I respect have different opinions on this. So, it's in my court now and I'm mentally taking it one day at a time. But if I had to guess, the end of tx is getting near. Thanks for asking.

-- Jim
116701 tn?1210259164
Are you still feeling well and energy still up?

I've been feeling so much better for the past three weeks. My old car that I told you about that sits up on stands. I backed it out of the garage under its own power. My standard line now about working on it is that I'm digging up a stump. At 15 of 48 and counting. All test are at great levels and the nupogen has been cut from 300 to 150 because my system reacted so quickly and the nuetrophils jumped back and went high but within normal categories.

Take care and thanks for the insights through this treatment time. Dale
96938 tn?1189799858
Thanks for asking. 3 months post-tx now and feeling great. Staying busy around the house and no longer exhausted at the end of a work day. Beginning to notice subtle changes, no longer the crankiest person in the house, more patience with kids around school, homework, projects, chores.  I had a bunch of spider nevi (spider-like blood vessels chest, neck, face that seem to be dissipating to a small degree. Back to coaching girls' softball team and expanding exercise (longer brisker walks about to give way to a running stride). Gained about 15 lbs back - which is about what I lost during tx. Playing weekly golf again. I went from zombie with HCV to zombie on tx and probably have not felt this good in a few years. 6 month pcr in a few months but knowing I was UD at tx end was a big lift and relief.  Don't know how much this was in my head or body. Insulin-required diabetes gone during tx (coincided with 12 clear pcr, I think). In normal ranges post-tx. Blood pressure meds still required but now in lower ranges when I suspended meds a while back to test a theory with the doc. 55 y/o, 3a, VL 600,000,  was 1/2, pegintron - redipen, 800 mg riba, 24 weeks, 100% med compliant,  neupogen/neulasta during tx, no procrit. Clear at 12 and 24.
Avatar universal
Hello everyone. I was reading the above comments and and I am wondering: What exactly is Thrush? I am mainly wondering because I have 13 weeks left of treatment and thank goodness for that cause I have had 35 long weeks of tx already but I have noticed in the past 2 weeks that my tongue is red and feels irritated. Can someone tell me what the symptoms are? I know we have no doctors here but I'm wondering if this could be the begining of thrush? Any comments would be appreciated. take care and have a healthy day
92903 tn?1309904711
This is certainly a difficult decision on your part. As amommy points out, one factor to consider is your Riba dosing. Assuming you've been on 800, that's a relatively high dose for your weight.

Based on your weight, it's probably also fair to assume no faty liver? That's another factor in your favor.

I looked at the study posted by Jim, but I couldn't make sense of it. It seemed to say all patients with VL >600,000 were treated for 24 weeks, then it went on to say that G3 patients with VL >800,000 didn't do so well when treated for 16 weeks. I can't reconcile that in my softish brain. Also, there is a theory that a 4 wk RVR, overrides other predictors, but this abstract didn't really break that out. In otherwords, by acheiving 4 wk RVR, you may not be in the population of 'under acheivers' identified in this study. It's hard to tell.

I would try to look at some of the other studies, then give serious consideration to risk vs reward. How difficult would a relapse be for you, vs how much better off will you be to get out at 16 weeks. The difficulty of course lies in quantifying what the extra 8 weeks buys you in terms of improved odds. That's the million dollar question.

BTW, I was in your shoes and chose the 24 weeks, but my treatment was not causing too much trouble, and I have advanced liver damage. Last shot this week.          

Avatar universal
Hope this link helps. Geez your almost there, best of luck to you.

http://www.nlm.nih.gov/medlineplus/ency/article/000626.htm
Avatar universal
Red and irritated is very normal. In fact I can't STAND IT either. It's why I eat so much ice cream and frozen yogurt in fact and can't eat anything spicy at all and I LOVE hot food :(

Thrush is a whole different thing completely. Your mouth gets coated and looks like you just drank milk sort of - and it hurts like somebody cut up your tongue and it's hamburger meat. You have to take this gross medicine which you swish around in your mouth and then swallow.

I think it's caused by killing off too many of one type of a good bacteria inside you (why I get it from Erythromicin).

So as long as your tongue is RED and irritated (little bumps and stuff too) you are fine.

I don't know the technical ways to describe it but you could google that easy enough.
Avatar universal
Said ssuming you've been on 800, that's a relatively high dose for your weight.

Don't worry I now weight 117 and I am still on 1,000 a day as I have been all along (and sometimes I pop an extra one on shot night for some wierd reason).

But it is a high dose and has caused sx as you know.  So I'd think 800 is ok for her.
Avatar universal
God I hit send before I finished - having some Riba day.

Sometimes - although it goes exactly opposite what statistics say and what we THINK having a LOW vl is HARDER in fact to cure than a very high one.  Ask me. Ask Cuteus. There have been plenty of people in here who have had really LOW vl's that have had trouble.

I had a three log drop at week 4 then stayed FLAT to 12. Don't know what 24 showed yet but...although they insist a low viral load is a good thing...for some reason it's not EVERYBODY and that is for SURE.
Avatar universal
I am sorry things are so rough right now.  The thrush mouth according to something I just read is attributable to neutropenia - a drop in the absolute neutrophils. The same is true of the respiratory infections.  You said you had started Procrit but what about Neupogen?  It sounds like your neutrophils are low. Neutrophils are the component of the white blood cell that fight infection.  When they get low, you are open to infection. Can you look at your last CBC and read the absolute neutrophil number (maybe shows up as #NE). Neupogen is an effective way to boost those white blood counts and the side effects are relatively low.  Just once more shot (boo)

My hemotologist said thrush mouth is a common which is a fungal infection is a common occurence on interferons and that if  I had it let her know.  She has formulated a mouthwash for that and would give me some.  This isnot the only doctor I have heard of that has made up their own mouthwashes for thrush.  Niastatin is also prescribed for thrushmouth - I don't know if it is OTC or rx.

I hope youare able to continue as your starting vl was so high.  Hopefully you will only have to do this once, and you already have so much time infested.
Kathy
92903 tn?1309904711
I see what you're saying, but when push comes to shove, I think one needs to look at the statistical analysis. I personally would try to focus on the larger statistical base, rather than the individual anectdotal cases.

You note that there have been people with low VL having trouble clearing. True, but there have also been high VL in the same boat.
119874 tn?1189755829
You won't believe this.  After posting my note (complete with tears) this morning, I picked up a coffee and was taking my car in for a tune-up.  I ran a red light, got blasted by two cars coming from both directions, and rode in an ambulance to the ER (reeking of the full cup of coffee that spilled all over me).

Now have sprained shoulder and MORE drugs to take.

Here's the good news.  1. I'm really hoping my car is totaled so I'll have an excuse to get a new one.  2. realizing that I could've been horribly or permanently injured in that accident--I'm feeling more like I can handle 24 weeks of treatment.

All of your comments are VERY helpful and give me some new things to follow up on. I especially appreciate you guys taking a position on the issue.

Goof, you only have one more shot.  You go. dude!
FlGuy--I'm gonna try harder to get in touch with my inner tough mouse.  Thanks

P.S. I highly recommend hardened coffee to give that thinning hair a bit of lift.
86075 tn?1238115091
wow, just when you think you couldn't have any more fun, geeesh! I hope youre okay...good luck to you on your journey, i'll be taking notes!
Avatar universal
HOly COW when you do things you really do them!  I am so sorry (although sure hope you get a new car!)

One real problem I have on treatment is my driving STINKS I forget to signal and stuff sometimes I have to REALLY work to pay attention (that brain fog makes it so HARD0.  I know there are a couple others in here that have trouble driving too. BE CAREFUL when you get that new car!

Goofy there are always exception to the rules that is why it's a 50- 50% chance right?  :)
Avatar universal
My brain has also softened on the meds, but I think this exerpt from the study is most relevant to Algeron's decision. Beyond that, I find most abstract's by their nature to have an incomplete and sometimes contradictory feel, which is almost always resolved if you search out the full-text study. So not having the full-text at hand, I'll take it that their conclusion is supported by the data.

" Patients infected with HCV genotype 2 achieve excellent (early, end of treatment and) sustained viral response rates following therapy for 16 or 24 weeks. Similar response rates are observed in patients infected with genotype 3 and a pre-treatment viremia <800,000 IU/ml who achieve an early viral response at week 4. SVR rates in patients with HCV genotype 3 and a viral load >800,000 IU/ml are generally lower"

I read it as the subset of geno 3's who; (1)  achieve EVR; and (2) have pre-tx viremia >800,000 IU/ml --  do not have as high SVR rates  as geno 2's who achieve EVR with similar pre-tx viremia. My understanding is that Algernon does not therefore fit the short-course criteria for early termination at week 16, with her high pre-tx viral count as the main factor.

-- Jim
119874 tn?1189755829
All laid up with my heating pad and muscle relaxants...  I want to reiterate what NY girl says about driving.  I'd actually been having less fog (or so I thought) but we all need to be EXTRA careful when driving.  No phones, no drinking coffee while driving, etc.

Don't worry CanDo--If I get a new car, I'm going to print out the consumer reports list of the 10 safest cars.  I figure that whatever I buy better be able to take an impact (this was actually true for me even prior to treatment...)


Friole/Kathy:  GREAT TYPO.  Here's what you wrote:  "you already have so much time INFESTED".  THat made me laugh.

deb




119874 tn?1189755829
Jim, Your thinking on this seems sound to me.  Thanks for analyzing the data.  I'm really lucky I didn't get hurt even worse today. And I'm really lucky that I can stop at 24 weeks.  Gotta keep things in perspective.  

Good thing I'm not trying to write a personal ad these days:  HepC, Chemo, middle-aged with two young kids, no car, and thrush.  Otherwise, a real catch.
Have an Answer?
Top Hepatitis Answerers
317787 tn?1473358451
DC
683231 tn?1467323017
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Answer a few simple questions about your Hep C treatment journey.

Those who qualify may receive up to $100 for their time.
Explore More In Our Hep C Learning Center
image description
Learn about this treatable virus.
image description
Getting tested for this viral infection.
image description
3 key steps to getting on treatment.
image description
4 steps to getting on therapy.
image description
What you need to know about Hep C drugs.
image description
How the drugs might affect you.
image description
These tips may up your chances of a cure.
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Here’s how your baby’s growing in your body each week.
These common ADD/ADHD myths could already be hurting your child
This article will tell you more about strength training at home, giving you some options that require little to no equipment.
In You Can Prevent a Stroke, Dr. Joshua Yamamoto and Dr. Kristin Thomas help us understand what we can do to prevent a stroke.
Smoking substitute may not provide such a healthy swap, after all.