52 vs. 48 weeks of tx -- would it matter?

[stan1]

i'm finishing my 48 week treatment today, and due to a prescription-filling snafu, i ended up with an extra 4 weeks of meds that are non-returnable.   does anyone think it would make an appreciable difference in my SVR chances to continue treatment for another 4 weeks?   i am geno 1 and don't know my exact baseline viral load at the beginning of tx (docs used old 2003 figure of about 60,000 as a guide)......the virus became unmeasurable on the "old-school" PCR test at week 4 (the one that only measures down to 650).  at week 12 it was undetectable on a more sensitive PCR test that measures down to 25 IU, and it hasn't "broken through."   ALT has remained consistently above normal for most of tx, though rarely above 100.   if you were in my shoes, would you carry on for another 4 weeks?   i know there's some research showing that tx extension out to 60-72 weeks increases SVR percentages for geno 1s, but this would be a "mini-extension" that probably hasn't been studied too much. truth be told, i'm having a lot of issues with extremely dry, cracking skin and am generally ready to stop now, but am having mixed feelings.   in one sense i feel that an extra 4 weeks would make little difference; if i'm destined to relapse it's probably gong to happen regardless of the small extension, and if on the other hand i'm set up for permanent clearance, it's probably already baked in the cake by the end of 48.

what would you do?   extending beyond 52 is not an option due to expenses, so i either stop at 48 or 52.  opinions, please.....thanks,

stan

[Amerabrit]

I would love to meet up with you guys if at all possible, just let me know the details!

I don't breed horses so haven't had a need for the skin creams you are referring to.  I used a cream made by Scherring Plough which came from England. My sister used it for psoriasis(?) I am sure it's available here, too, your Drs. should know.

[honey1616]

If I lived closer,,,,I would be there!  Yes,,would love to see Amerabrit also...
Hmmm,,,,First PCR?  Its there waiting on me LOL   I will go soon! haha

[cuteus]

care to come over?

I am driving some anime fans to a convention, so I will be ambling elsewhere since I only tolerate anime because of my daughter. She, her sister(30yrs old) and other teenagers will be "entertaining" me for the 5 hrs it takes to drive there. Maybe I should check on the ferry to cross the LI sound instead.

I wanted to touch bases with amerabrit also on my way up, I'll have to see about that one.
take care,
btw, when is your first PCR?

[honey1616]

You are going to Mass end of month?  Seems like quite a few are in that area,,,Lou and I know a few others,  Maybe you could all plan a lunch or something.

[DonL]

It's on my calendar. I'll drop you a line so we can plan something.

[cuteus]

duh! I forgot(no meds excuse) to wish you a smooth procedure and optimum positive results on the bx.
might see you at the end of next month...Boston has been booked.

[cuteus]

stan; I told my doc that if anything would make me quit the tx extension, it would be the skin problems. Last yearit felt like I had tissue paper for skin. any flexing would make it split, it was painful. one week at a time is all you need to do, like you said, you can stop anytime and once the winter eases off, the skin problems do also. My dry skin is responding to the ulactin well.
"udder cream" is somthing used on cows ****,  and is sold over the counter.
Amerabrit has horses upstate NY, maybe she has used what you were asking for.
good luck in the home stretch.

[DonL]

The psoriasis showed up in 1995. I personally believe that it was triggered by HCV, but no proof.

I am OK. Having a liver biopsy next week. I will be able to decide whether to retreat or wait, based on the results of that. I've been OK physically, still have some memory issues. I scheduled the biopsy and basically let myself forget about tx until then. (Except, of course, no alcohol. Also taking SAMe and vitamins under the theory they might help and can't hurt.)

[honey1616]

Hi Don...How ya feeling lately?  Did you get psorarsis from the tx or had problems before?  Right after I stopped my tx,,,I broke out with something on that order and was differnt from the riba rash I battled during tx. Keeps coming and going so I'm sure alot from what I have read is,,,,That it does have alot with the immune system being down.  Hope all is well with you these days!

[layla]

I think your attitude is very good. One week at a time. I also tried everything for the dry skin. I found just carrying around whatever moisturizer I used (happen to be mostly just vaseline intensive care that worked best for me) and putting it on every half hour or so helped me the most. When I watched tv or was working I just got into a habit of taking a good sqeeze and rubbing it in. I even ket a tube next to my seat in the car for consistent use. I wish you the best. LL

[stan1]

i just posted a long response but it didn't show up -- will try again tomorrow -- i think something is wrong with the forum right now

stan

[stan1]

thanks for the additional opinions posted -- seems like the board is fairly split in its recommendations!   when i went to bed friday i was leaning toward stopping, but on saturday i elected to soldier on and play it week by week.....so i did the injection and gobbled 9 pills that day instead of the 6 i usually take (to make up for the dose i missed.....i know, you're not supposed to do that).   i'm going to try to hang for the full 4, but i can't always quit at any time.  seems like the skin probs peak about 2-3 days after the shot, as the IFN ramps up to peak levels, so i'll evaluate midweek.  to answer a couple of questions that were posed:   my dermatologist categorized my condition as hand eczema (dermatitis) as opposed to psoraisis (sp?).   i think the latter is characterized by lesions that are very distinct in appearance and is an autoimmune disorder.   she didn't see any signs of that, thankfully.   it seems to be just extraordinarily dry skin.   i am applying heavy creams and night and covering up with vinyl gloves.   in the morning there's some improvement but a couple of hours later the hands are literally coming apart again.   i have had some interesting product recommendations here and tried many of them.  eucerin, cetaphil, bag balm, lac-hydrin, am-lactin, etc.   at one point someone (chevygal, perhaps?) mentioned a product that is used to soften horses' hooves or some other livestock use that doe some very intense moisturizing.   does anyone remember what that was?   i wrote it down and subsequently lost the note.   does anyone have some favorites among hand creams that they'd like to post?   how about chapped lip products?   i'm also having trouble finding vinyl gloves that fit relatively loosely -- my hands are large and most plastic gloves i encounter are "one size fits all" and end up being too snug, causing hand sweating at night.  cotton gloves seem to absorb too much of the creams, drawing the potions away from my skin.  any suggestions?   thanks and take care,

stan

[stan1]

i appreciate the helpful comments -- as far as questions about my blood counts and thyroid are concerned:  on WBC-related stuff i am usually just barely above the level that my doctor defines as neutropenia (.5).   it seems that i am at .6 much of the time.   this doesn't concern me much because of multiple studies posted here indicating that patients who develop neutropenia on tx don't seem to get infections any more than those who avoid it.   theoretically neutropenia makes you more susceptible......and that's a concern, but in practice infections due to low neutrophils don't seem to occur very often unless the patient gets severely neutropenic.    on RBC i am anemic but not excessively so, with a 5-6 point drop in HGB from baseline.   i developed hypothyroidism but am not worried about it because it is easily treated with a daily pill in my case.  T4 is normal now and TSH has decined from 200+ to about 28 -- still high, but the trend seems to be downward.

the main reason i want to stop is that my hands are absolutely falling apart -- i wish i could post a picture of them -- it's like something from a horror flick.   they're extraordinarily dry, inflexible, cracked and split wide open, despite using a wide array of products discovered through experimentation and recommendations from patients here and a dermatologist.   some days i have to wear gloves all day and avoid touching any surface with my bare hands because of the sensitivity.   i probably sound like a wus here, but this sx is impacting my Q.O.L. much more than the rest of 'em.

i had a shot a little over 7 days ago, and supposedly finished the pills at noon today (friday).   i can't bring myself to shoot tonight, so i'm going to sleep on it and skip the shot and pills for now and take a fresh look tomorrow -- maybe i'll feel guilty and dive back in.   i don't think taking a day off will kill me, and i'm having trouble deciding.  i almost wish i'd never obtained the darn extras so i wouldn't be ruminating over this so much.

my NP says if i stop now, the interferon takes 3 months to completely clear the body, and the RIBA 6 months to get totally flushed out by the kidneys.   of course the level of the meds is diminishing all this time, but geez, i had no idea they would hang around for so long.   she said most geno 1s don't feel much better until the 3 month post-tx mark because of the heavy-duty bone marrow suppression that's been ongoing for the 48 weeks.   this was not the most welcome news i'd received.....

i'll let you know what i decide, and please keep the suggestions coming.   the consensus seems to be "go for it," but my heart's not in it tonight -- maybe later.

stan

[raheem]

Stan, I was asking my Dr. the same question last year.  My opinion is that it will not help you.  After 48 weeks of poisoning yourself with interferon and ribavirin my sense is that 4 more weeks will only prolong your misery, delay your happiness of being off the **** and feeling better, will do nothing to help OR hinder your chances of becoming a SVR and in fact may be harmful.  I was 1b. I stopped at 48 weeks.  I even had the interferon dosage reduced at 29 weeks due to ongoing neutropenia. I am going to have my 1 year post tx test next week.  I have been clear since week 12 of tx and at 3, 6, and 9 months post tx.

[raheem]

Stan, I was asking my Dr. the same question last year.  My opinion is that it does not help you.  After 48 weeks of poisoning yourself with interferon and ribavirin my sense is that 4 more weeks will only prolong your misery, delay your happiness of being off the **** and feeling better, will do nothing to help

[DonL]

I started with a relatively low vl (141,000) and 1A genotype. Went 48 weeks, clear at 12, 24, and 48, then relapsed at 3 months. Would the extra 4 weeks have mattered? Don't know. I do know that making it to 48 weeks was hard enough. Knowing what I know now, I'd advise you to go for the extra 4 weeks simply as insurance.

I haven't followed your sx, but one thing they recommend with psoriasis is to put petroleum jelly or some other skin softener on your hands at bedtime and then wear latex gloves to sleep in. I've done something similar on my legs (wrapping them in saran wrap) and it helped.

Good luck.

[mikesimon]

I don't think that 4 more weeks will make a difference in your odds of SVR if you were clear at or before 12 weeks. But I can easily understand your ambivalence. I did 72 weeks but I had relapsed before with 52 weeks of tx so I felt I had to go the extra time. If you are really suffering maybe it's time to quit. This is a question that I don't think anyone can answer with any degree of certainty so it's really just a gut thing, as has been pointed out earlier. Which ever way you go I wish you the best. Mike

[Califia]

Just read your description of your Wes Craven hands and am more than a little alarmed.  Could you return to the dermatologist ASAP or consult with another one?   Sounds like you need more aggressive treatment and the sooner the better.   Wishing you the best...

[AK - Hepper]

I did 52 weeks and relapsed. I was not clear at 12 weeks, but was at 24.
I think if it is going to work at all, it will work in 48 weeks. Several people here have gone way past 48 and still relapsed.

[honey1616]

Stan,,,I had 2 different drs while I was treating.  One said 48 and other said 52. I cleared at 12 weeks also but decided to go the extra 4 anyways.  My hubby also went the extra 4 making 52 and he was clear 3 month post!  Just for good reassurance,,,why not use the extra meds?

[layla]

I know everyone feels different about this but my choice would be to do the extra tx. Big reason being you don't know your VL at the start of tx. Higher VL have a harder time with SVR. An extra 4 weeks would be preferable to doing it over and I personally would have a very hard time dealing with my choice if I did not get SVR. I have to say I am surprised your doc did not check your VL before stating tx. I would do 48 weeks from clearing being a G1. Again this is just what my choice would be and I did do exactly that. I am SVR now. At 3 months I did test undetectable on the >600 but I had themore sensative test and was not undetectable. I am very glad I had that done and chose to extend tx. I wonder how many people were undetectable on the less sensative test at 3 months and then did not get SVR and they might have actually been still detectable but at a lower lever and should have extended tx. LL

[Docsgold]

I am glad you posted what your doctor said.  My last order of meds would have given me 2 months extra supply of interferon.  I had my doc change the order to a 1 month supply to meet my 48 week tx.  I have 3 weeks left!!  My physician did not want to extend tx early on when I asked since I cleared at 12 weeks.  Besides, if I had taken it upon myself to extend that tx an extra 4 or 8 weeks, would he have gladly order the monthly bloodwork?  I decided not and hope I have made the right decision.  I have had enough side effects from this poison for now.  Your post made me feel better about my decision.

[hepcgetlost]

I agree with cuteus...go for the additional four weeks if your counts and thyroid are holding out okay to this point. The dry cracking skin is exasperating, but it won't kill you and there are lots of remedies for it. Before I finished the planned 48, my doctor urged me to go for 72 (I'm a genotype 4 and didn't clear at 12 weeks...I cleared at about week 19) I'm now on week 67 of 72, and despite my apprehension about doing it for so long, now that it's almost over, I'm really glad I did it. Whatever happens i know that I did everything possible to fight the fight.  I'm just sharing my own experience, and you may have good reasons for stopping at 48, and only you and your doctor know what's best for you.If you do decide to stop, please don't allow those 4 weeks of injections go to waste. There are an awful lot of people who can't afford to stay on tx and would benefit tremendously from what you can't use.

Whatever you decide, just know that it will be the best decision you made based on all the factors you will be considering. Good luck with everything and I wish you and all of us SVR forever.
Judi :-)

[cuteus]

i would go for it. get some more skin crack repair and urea/lactic acid lotion and finish them up if you have no life threatening problems. we do get svrs on 48 wks but we also get relapsers. better to know you went the extra mile than regret you didn't.