Riba Dosage Reduction - Noticeable changes in Fatigue

Trying this again!

Am new here.  First time posting.  First of all, this site has been a very helpful place for me during my treatment.  Have found great insight and information, also comfort in knowing I’m not going through this alone.

Am geno 2b doing 24 wks Peginterferon alfa-2a/Ribavirin, 60yrs old, at 6’3”, starting treatment at 238lbs, 2,368,000 Viral Load, UND at 4 weeks, TMA negative.  Have been doing max 1200mg riba/day, 180mcg interferon/wk since beginning tx.  Still UND at 9weeks.  Am now at 224lbs.  Only experiencing minor sx so far, mostly fatigue after exertion lately, eye sensitivity, ear plugging problems.  

Am starting week 10 and doc now advises it’s okay to lower riba to 1000/day.  With that small a reduction, can I expect any improvement in how fatigued I’ve been getting and if so how soon will I notice it?  Has anyone out there done this and noticed a difference?  My stats at beginning treatment 7/23: WBC 8.8; ANC 5.2; Platelets 282; Hgb 16.7; Hct 48.  Current stats (after fasting tests 9/25):  WBC 4.4; ANC 2.17; Platelets 225; Hgb 13.6; Hct 39.9.

Thanks for listening and any help about this.  I’m sure I’ll find out from the experience, but specifically need to know if I will notice a difference within the next two weeks.  I have been working 9-hour days through treatment and also am a singer in a chorus that rehearses 2 and 3 times a week.  In two weeks I have a seven-day stretch of evening singing rehearsals and concerts (with a choir and orchestra) and the thought of those long days has me worn out.  As it is now, I’ve attended two 3-hour rehearsals and afterwards am wiped out and the whole next day my energy level is shot.  I was at a point where I was going to call it quits with singing until after treatment, but then the doc said I can reduce my dosage and it might give me more energy.  Now hoping I can continue, but just not sure one pill will change how I feel enough to make it worth it, especially within the next two weeks.  Thought I’d check to see what others have experienced with dosage reduction.  
Thanks again.
SkipinCA

[gauf]

Wow, you are really doin great with your tox! I had ALL the sides. Fatigue is the most commen sx and, if it is the worst thing you have to deal with, well then lucky you!  The Riba reduction may help, although not sure why your doc is lowering the dose. Just fatigue?  You are doin great so I wouldn't change a thing. Others with more knowledge will weigh in.


Just my two cents and worth every penny!

[debnevada]

Actually, you are not on weight based riba right now. I weigh less than you and am on 1400 riba.

I can't speak to your question personally, but I think Eric (Andiamo) felt better with a dose reduction of two pills.....Eric, correct me if i am wrong.

deb

[mremeet]

I felt better going from 1200 to 1000, but it wasn't an overwhelming improvement. Going to 800 definitely made a diff, especially skinwise (I weighed ~170lbs at the time). Whether you can keep up your whirlwind lifestyle, who knows? But an hgb of almost 14 is above normal for many people (even off treatment), that's a great HGB to have during treatment. Be grateful to be doing so well. And what deb said is right on about your riba dose, be careful dropping down too low too soon. Sure would be a shame to underdose your riba and lose out on an SVR for something as 'superlicious' as chorus' sake. Then you'd have to redo the whole thing...might have to join a blues band after that.

[geterdone]

Hi SkipinCA,

Hope this helps,
I am a geno 1b doing 48 weeks of Pegasys Interferon alfa-2a/ Ribavirin, 53 years old, 6’4, well (use to be, haha), started treatment at 210lbs down to lowest at 175, vl 4.7m UND at week 8. Started tx at 1200mg riba a day and interferon for the first 20 weeks but lowered Riba dose to 1000mg at week 20 because of work load and being very fatigue and other side effects. I am now going into week 30 and am able to manage work and have a social life and have more energy to do so. What I had to consider before reducing the riba was the blood work and a hyper thyroid problem caused by the meds and the discussions with the doctor. Being still UND at week 20 he was in favor of my request to lower the riba and to see if the thyroid would straighten itself out which it did on the lower dose and help reduce the fatigue but I still on procrit to keep hemoglobin steady. Yes, I did and have notice a big difference after the first two weeks of the reduction and now have since reached a nice balance to finish out the tx. I still get fatigue, as the day goes on but not as bad as in the beginning and still suffer some of the other sides but am able to deal with them. To your question, Yes! I will say you will defiantly feel better after the reduction of the riba. What is your tx 48 weeks or shorter?

60yr old and still rolling, Hope you’re able to continue.

jasper

[SkipinCA]

It has been my biggest thought right now: how important is it for me to do these extra things.  Guess it's sort of a humbling not to be able to do it all.  But I definitely don't want to compromise my treatment and have to go through this more than once!  Am going to recheck with doc to make sure this is the best.  I've been told the 1000 dosage is ok, but if it is better for me to stay on 1200 then I am rethinking lowering it.  Meantime, am counting my blessings. thx all.  

[geterdone]

Oops! 24 weeks my bad, stay the course and keep it at 1200mg a day until at least 18 weeks. Your too early out of the gate to even think of reducing the riba, I don’t know why your doc even suggest it if you’re doing 24 weeks TX other than the fact it was interfering with the choir and concerts, know what I mean.

jasper

[jmjm530]

Probably OK to drop down BUT you seem to be doing so well (UND by TMA at week 4) why change the winning formula as long as you're handling the sides OK? You're a big boy and one could argue that you should have been on 1400 mg/day per weight-based dosing. Personally, I'd try and stay at 1200 if I could tolerate.

-- Jim

[Lady Lauri]

Confused here. I'm 2b and started tx (trial study) at shands last week. She couldn't tell me wether I'd do Pegasys or the albumin until day of 1st tx. ('drew' the norm, pegasys), BUT...she did tell me it'd be 800 Riba well before tx. i asked if that was because I am small (128lbs), weight based, she said no, that the 'standard' Riba for type 2 is 800 Riba. ????
(was glad to hear a lower dose , either way :}

                                                                                       LL

[merryBe]

my 2 cents is based on Doctor info. For the hightest levels of CURE, and they call it a cure here in Portland, the results are based on the big guns from the start, and not cutting back even if you Clar completely in 4 wks. So naturally I asked why, and the why is, whether you speak of hep B with 90% cure, or Hep C-1a with a 50 % rate, those numbers are based on those who stayed on the full load the whole time. It's the only way, they say, that there's a chance of it never coming back.
It makes sense when you think of it, your body doesn't know there's only 50 viral cells left in your body...it just knows it has to fight until they are all gone. If eeven a few survive, they can come back, and come back even more resistant to treatmet!
the desire to take less of something that make you feel bad is always going to be there.
ask yourself what it will feel like to die with an exploding abdomen, racked in pain as all organs fail as a result of cutting back on dosage.
I'm only on week one of tx. But so far, it's not any worse than many days of the last 6 moths.
It's the light at the END of the tunnel that matters.

think of your viral cells like dandelions, if you don't spray regular, of pull up the WHOLE root, those little weeds keep coming back stronger and stronger and reseeding themselves everywhere there a speck of open dirt. Sooner or later, you'll regret not taking care of that lawn, it will look bad, and be a pain to rehabilitate.

now remember those little viruses are replicating and would love for your immune system to not have quite enough to knock them out....the next batch grows, and they are more resistance to your meds (weed killers) than the last bunch. the only difference is, it's not just a ratty looking yard we are talking about here, it's your life, and whether you'll be here in 5 yrs.

me I'm taking the full load, and will continue to as long as they let me. things like choir can build us up, but if they are too exausting, give yourself permission to rest; learn to deligate, and make plans for what you'll do when you do return to full strength. No one should push themselves out of treatment for obligations that are not essential. Even a wounded soldier knows when it's time for him to heal in the infirmary, rather than stay out on the battlefield. let's hope we fight this battle well, and cann then live to fight another day!!!!!

[Proactive]

@128 #'s and 800mg riba, either way you slice it, SOC (800mg riba for geno 2's) or weight based..looks like you are covered...

[froggydan]

i know, i know, but...maybe its useful to try to loose a bit of that weight - what do you think ? I heard that for thin or slim people the treatment acts better with more hope to SVR . (only my 2 cent ;-)

[nygirl7]

"Probably OK to drop down BUT you seem to be doing so well (UND by TMA at week 4) why change the winning formula as long as you're handling the sides OK?"

I agree and don't think it's a good idea AT ALL - you're doing so WELL why take a chance of botching it up and not getting SVR?  

I truly do believe however that you should have been dosed even higher to start - geno 2 or not - because your weight is a disadvantage.  We need all the help we can get to rid ourselves of this disease and believe me if it has a chance...it will begin replicating like CRAZY!

Since you are on such a short course of treatment I'd say go for it with all the gusto you can - and never EVER have to do it again.  Next time if you had to treat it would be a higher dose AND 48 weeks long.  Not worth it.  DO EVERYTHING YOU CAN TO GET RID OF IT NOW.

[Lady Lauri]

Thanks Pro. Hadn't thought of it that way-either way I am covered!

  As we're both 2b and same tx,  I am curious as IF  800mg is the  'standard' for type 2b' (as she put it in the way of not having to be weight based), why they started you-Skip-at 1200 riba? Even weighing more, it has been explained to me that way.
(which is why I am grateful to ask all of you these things for more knowledge, opinions!) I will be asking her @ that Friday, just curious.
Also.......anyone have anymore input about the stats on type 2b's chances of SVR with 12-14 weeks versus the whole 24 weeks tx. In my 1st few weeks of researching I did find that the % of SVR only dropped by 5-10% when stopping at 12, IF UND at 4 weeks, etc.
Anyone know much on that one?
Skip..... 2 shots and 46 pills into this, I am still pigging out. NO nausea at all and eating a LOT, especially chocolate. Lucky I have people here making me good food :} as I am quite fatigued, but was before tx already. Have you just gone to no appetite or nausea the problem? I’d guess with men especially some of the loss is muscle weight as per less activity, etc. tho it's only 14 lbs. for you, that would make me bones! Just wondering and glad your doing so well on the sides. Hope you continue well in this.
                                                                  LL

[SkipinCA]

Thanks for yours, LL.  

Since my initial post, have spoken to my doc.  In my simplified version of what I've been told, I understand my dosage is not weight-based, that I was started initially with the 1200mg riba with the idea that if I tolerated it then I would stay on it, and if I had problems later then the dose could be reduced rather than putting me on procrit or neupogen, i.e. more choices for dealing with sides, etc..  Then when I was UND and TMA neg at 4wks and again at 9 weeks, my doc says I can go to 1000mg.  I'm told that the riba has done its work in combo with the interferon and with the minimum reduction, will continue to do its work.  doc is very reputable and up on latest studies, trials, etc., so am sticking with treatment - doing as I'm told.  I really have appreciated all the input I've received from everyone.  It has kept me asking questions and has helped a great deal in making the decisions I've made the past couple of days.

Roche says standard is 800mg from what I gather.  When I spoke with nurse associated with Roche she initially wanted to know why I was started on such a high dose.  

A little about me:  I was diagnosed in 1997 - figure I initially got exposed to this back in 1979 when I was 32.  I waited from 1997 to 2003 with liver panels regular and ALT/AST checked.  I still waited.  Then in 2003, rather than do tx, I had a biopsy, liver pink and healthy, no fibrosis or other problems, told I could wait 5-7 years for tx if I wanted.  VL was 2M.  I again decided to wait for new trials/possible new tx.  Then January this year VL was 5M so I decided to do tx.  Quit smoking in 1984.  Not a big drinker before (mostly beer and a little wine now and then) and had stopped completely 3 weeks before tx. Also before tx had  been going to the gym with a trainer weekly.  In further prep for tx, I stopped eating heavy foods, desserts, etc.  Beer was a favorite - hardest to quit.   During tx so far (10th week) have had a very good appetite, food tastes great, very little nausea - only a little first 3 weeks.  I'm 6'3" small boned, not very overweight for my height.  Am at 224 today (down from 248 in February '07).   The weight I've lost has me curious.  I've been eating well and yet still I manage to lose about a couple lbs./wk.  Am running out of fatty spots for injections.

Have been tolerating the drugs very well - knock on wood!  Biggest problems right now: constant right ear plugging (checked it and no infections), eye sensitivity (sunglasses necessary), and fatigue is the biggest problem.  Hgb actually went up to 13.6 last time (my beginning hgb was 16.7.  Other stats are in my initial post.  doc is no longer worried that I will become anemic at this point.  I of course worry about it all the time because that's what I do.

I guess I was lucky prior to tx that I had no extreme HCV symptoms, mostly just tired every once in awhile.

thanks for the well wishes.  I pass mine to you and hope your tx goes well. skip

[desrt]

The last I heard, if UND at 4 weeks, geno2s could do 16 weeks of Pegasys(IFN alpha 2a) or 12 weeks if doing Peg-Intron(IFN alpha 2b) and only drop the probability of SVR a couple points. Geno3s, on the other hand, drop from the 80%-85% range down to about 67%. Those are numbers from some older shortened protocol studies - there's probably more recent info.

For me (geno 3e similar weight/height as Skip), dropping my riba from 1200 to 800 at week 19 was more a psychological boost than anything else, since my CBCs stayed close to normal range. My gastro wanted me to do 48 weeks at 1200 mg riba, being of the "if a little bit is good a whole lot must be better" school of thought, but I quit after my 23rd shot.
Worked for me.

[SkipinCA]

thanks for your 2cents.  I just posted to LL which sort of spells out what I've heard since.  I will not forget your dandelion descrip. and I do hope obviously I've made a right decision.  We all have to make choices, and I'm trusting my doc thru this.  But I'm going to be questioning all the way so I understand why.   As for the choir, I have done exactly as you suggest - given myself permission to rest from it.  Have made the request for a leave until tx is over.
best wishes,
skip  

[Lady Lauri]

hey Skip, have a few replies to your post but my *&%$# DSL has been down all day and I give up on this dial up, waiting 4 minutes for post to go thru, than 2 minutes for back button, etc.
Giving up , waiting till DSL problem fixed and going to bed!
Hope your having a good day.
(and hope this post thru!)
                                                            LL