Reduced dose

[kittyface]

Hello Everyone, long time no see.  I'm 24 weeks into tx, cleared at 9 weeks.  Been deathly sick, mostly bedridden, lost 30 lbs (am looking quite skeletal), hemoglobin down to 9.1 so I reduced interferon to 135 instead of 180 and riba to 800 instead of 1000 about 10 days ago.  Also, took Alinia for first 6 months but stopped it.  For anyone taking Alinia, it really messes with your intestinal bacteria so be sure to load up on various probiotics upon completion.  Tomorrow I'll post a recipe to replenish the hundreds of different types of flora found in the gut.

Am feeling better with the reduced dose but now starting to worry about chances of SVR decreasing.  Will see specialist soon to discuss procrit although original doctor thinks it's a nasty drug.

My question for the old timers here is have many people who reduced dose greatly reduced chances of attaining SVR?   Thanks!

Best regards,

Kittyface

[kittyface]

I envy your movements, omg, did I just say that?  I can go back on the Alinia, in fact, you've convinced me to.  Thanks!

I'll keep in touch more -- I promise!

KF

[orleans]

Wow, Funny how differently each of us react to the same substance. Alinia had the opposite effect on me. I have been VERY regular since starting it. Now I have to add that it did change things, I won't bore us with the sorid details but I will say I will be glad to get back to normal. I would struggle with the decision of which drug I would drop if I were to drop one. The IFN/Alinia arm of the Egyptian trials did really very well. jerry ps kitty, if you get to feeling better keep in touch!

[kittyface]

I wish I could evacuate 3 times a day!   Now I'm lucky if I go once a week.  I think it's due in large part to the Alinia so be sure to stock up on pre and probiotics.

I didn't notice any sx from the Alinia but I was so sick from everything else who knows?

Hopefully my life will improve if I get some Procrit next week.

Take care,

KF

[kittyface]

Hi, glad to see you're still around and hope you're doing well.  I'm feeling better so I think my hemo is on the rise.  I'll test it later this week in advance of hepatologist appt next week.  It's not just the anemia -- the PEG makes me feel awful too

This is the first time I've seen this doc so I'm fortunate I got in so quickly even though immediately would have been better, you're right.  It's really my fault cuz my original doc is not a specialist.

It will be interesting to see if the hepa guy increases my doses -- I'll give ya'll a full report next week.

Take care of yourself and talk to you soon

KF

[kittyface]

Hi Jerry, good to hear from you, too.  I quit taking Alinia because I was sick of taking all the meds.  I know that's not a good reason but I felt like I didn't need it anymore.  Shortly after went to ER with vomiting and they said I was constipated/impacted even though I had bowel movements.  

I'm glad sx aren't too harsh for you -- hang in there and let me know how you're doing.

KF

Here's the recipe to restore intestinal flora.

What are natural sources of friendly bacteria?
Fermented foods are of great importance to the diet of the world’s people.  Most cultures use some form of fermented food in their diet ranging from yogurt to sauerkraut, kemchi, miso etc. These foods are a natural source of many of the friendly bacteria we need.  

Why are natural sources better than a pill?
A pill from the health food store provides only one or a few species of these friendly bacteria (most commonly Lactobacillus acidophilus, or a Bifidobacterium species), but there are over 400 different species of friendly bacteria and each of them has a definite job or function to do in our system.  We need ALL of these species, not just a few!  The best way to get them is through natural products. One such product is Rejuvelac.

What is Rejuvelac?
Rejuvelac is a liquid made from fermenting whole wheat or rye seeds.  It is by far the most economical and potent source of friendly bacteria, and one of the most powerful things you and your family can do to rejuvenate your color and improve your health.  Ideally, you should drink it every day of your life, or at least one-week of every month, to renew your intestinal flora.

Directions for making REJUVELAC

1.) In a sprouting jar, rinse 4 tablespoons of organic wheat berries or rye berries. Use only non-chlorinated spring water. Drain the water and allow the berries to stand moist for 24 hours. Rinse and drain daily until a tiny white sprout appears on the berries.  

2.) Transfer sprouted berries into a blender.  Add one quart of spring water and blend for 90 seconds.  Allow this blended mixture to sit on the countertop for 48 hours uncovered.  It will look cloudy and foamy.

3.) After 48 hours, the concoction will have fermented (it starts to smell like sauerkraut and will taste like lemon).  Strain this fermented mixture through a coffee filter and immediately transfer the liquid to the refrigerator.

4.) Drink 4 ounces of this fermented liquid twice a day, anytime, with or without meals.

5.) Start the next batch of Rejuvelac so that it will be ready when you finish the first one.

Hints:

·Wheat or Rye “Berries” are the whole grain seeds from which a plant grows.

·You’ll find wheat or rye berries at Whole Foods and other organic food suppliers.  

·They must be organic.  

·Either hard or soft “berries” will do.  

·The Rejuvelac always looks cloudy and smells fermented.  

·If it smells putrid, then discard and start all over.  

·It will smell putrid and rot if the kitchen is hot during fermentation or if you cover it.

·Always keep uncovered.  

·It will keep in the refrigerator for 5 days.

[kittyface]

Thanks for posting that article, it gives me hope that I can really stay on this stuff and SVR.  For a few moments there I almost threw in the towel.  You know how it is!

KF

[kittyface]

Hey Jasper,

Thanks for the info and I'm glad you stayed UND through your dose reductions.  Hopefully I will too.  I'm too much of a wienie to increase my PEG again cuz I'm sick of feeling sick.  I see the hepatologist on Sept 10 and if he says do it I guess I will.

My thoughts are with you as you await your 6 mo test.

KF

[kittyface]

Well I guess I'll tell you my weight.  I started at 160 and am down to 130.  I'm 5'9" and big boned so now I'm way too skinny -- I literally lost my as*!  Never again will I complain about gaining weight too easily.  Be careful what you wish for!

Kittyface

[merryBe]

meant to say Sadists.

[merryBe]

ditto what nygirl just said.

even a half point HB increase has me doing cartwheels...well almost..

the Alinia is something I had to take a break from from time to time because of stomach upset. But that only became an issue when I became anemic, and has cleared now that the anemia is better.  

It is true you need to keep a healthy colon. Every liver patient should have 3 evacuations a day to keep ammonia build up to a minimum. But I think the anemia itself is what cause you to be bedridden and sluggish.

I hate when docs think getting by with 1/3 less oxygen is fine. Let them try it!!
They worry about protein and hormones hurting us...but oxygen deprivation kills brain cells...why this doesn't concern them is the bigger question.
Or how do they feed their hungry families when they can't stand up for 3 minutes....

If you have to, ask to see another doctor in the practice, even medicare people are allowed procrit at your level. I used to have a dentist who used to love to drill my teeth with no novocaine.  Mascochists we don't need more of.
mb

[nygirl7]

PS I meant to say to you 'get in to see that specialist today'.  You shouldn't have to wait in the shape you are in.....call his NP and give her the details.  Nobody should have to live at 9 that's just rotten.  Nasty drug? I say nasty decision doctor let's see how YOU feel with so little oxygen in your blood!

OH can you tell how mad it gets me! In three years and hundreds of people on all sorts of doses of Epo I've never seen ANYBODY have one problem from it - nothing but joy when their levels got back up to over ten (yes once you get back over ten you will be shocked at how good you feel when at first it felt so bad to go DOWN to ten....completely different when you go up!)

Hang in there - call that specialist now and explain, you should NOT have to wait!

[nygirl7]

I just don't understand why a doctor wouldn't give someone with your weight loss and hemo level procrit to begin with.  Why chance letting the virus back in with a reduction at all?  Why force you to live with a '9'?

I remember full well what it feels like however I refused to reduce (I was on WAY too much but I was paranoid because i was a 1a and also a 1b and somehow got confused and thought that meant I needed more meds) but the doctor did give me epogen and I lasted from week 3 to 72 that way.

Nobody knows how YOUR body will continue to learn how to boost it's own immune system (this is why we stay on treatment AFTER we are UND) with a reduction. It could be just fine - you have to hold on to that hope.

Have CBCs as often as you can and if your hemo doesn't go up that much find a doctor who WILL give you the epogen.  Cautionary tale to everyone - if you dont HAVE to dose reduce just don't!

When is your next PCR? I would hope that this doctor is really monitoring you and what is going on because it sounds like you need it and God forbid IF (big IF) you did become positive again you wouldn't want to stay on the meds in this shape any longer than you have to.

All the best to you! Good luck!

[orleans]

Hey again, I wasn't sure I could find this but did.---Study Demonstrates Safety of Erythropoiesis-stimulating Agents to Manage Ribavirin-related Anemia in Hepatitis C Patients
Last updated:01August2008

By Liz Highleyman hivandhepatitis.com


erythropoiesis-stimulating agents (ESAs)

Red Blood Cells
Hemolytic anemia is a common treatment-limiting side effect of ribavirin used in combination with pegylated interferon for chronic hepatitis C. But an adequate dose of ribavirin helps prevent HCV relapse after completion of therapy, leading physicians to use erythropoiesis-stimulating agents (ESAs) such as Procrit to increase red blood cell production.

In November 2006, the U.S. Food and Drug Administration (FDA) issued a warning regarding an increased risk for serious cardiovascular complications associated in patients receiving ESAs More recently, the agency warned that these drugs were associated with more rapid tumor growth and increased risk of death in people with certain types of cancer.

Noting that clinical data in other patient populations has demonstrate increased rates of cardiovascular events, thrombosis (clotting), malignancy, and death among ESA recipients, Canadian researchers sought to determine whether these complications were also increased in hepatitis C patients using ESAs to manage ribavirin-induced anemia during hepatitis C treatment.

As reported in the July 15, 2008 issue of Clinical Infectious Diseases, the investigators identified all recipients of combination interferon/ribavirin therapy at the Ottawa Hospital Viral Hepatitis Clinic between October 2003 and October 2006. During this period, patients initiated 174 total courses of anti-HCV therapy. Predictors of ESA use were assessed using regression analysis, and adverse events during and after treatment were evaluated.

Results

Predictors of ESA use included older age, lower body weight, lower baseline hemoglobin level, and infection with HCV genotypes 1 or 4.

88% of ESA recipients achieved targeted hemoglobin levels of > 110 g/L.

The sustained virological response (SVR) rate was higher in ESA recipients compared with non-recipients (54% vs 45%, respectively), but the difference did not reach statistical significance.

In the period following HCV treatment, no patients experienced myocardial infarction, deep vein thrombosis, or pulmonary embolism.

The frequencies of stroke and cancer events were low overall.

Rates of adverse events appeared to be similar in the 2 groups.

Based on these findings, the study authors concluded that "ESA use is not associated with increased risk of cardiovascular events, malignancy, thrombosis, or death in HCV-infected patients during receipt of HCV therapy or in the period after completion."

"Given the inherent differences in patient populations, practitioners should exercise caution when extrapolating the results of studies of other diseases to HCV infection," they added. "Our efficacy and safety analysis suggests against the withholding of ESAs in the management of anemia induced by HCV treatment."

Department of Internal Medicine and Division of Infectious Diseases, Ottawa Health Research Institute Methods Centre, Ottawa Hospital, University of Ottawa, Ottawa, Ontario, Canada; Damos, Hamilton, Ontario, Canada.

7/29/08

Reference
CT Costiniuk, F Camacho, and CL Cooper. Erythropoiesis-stimulating agent use for anemia induced by interferon-ribavirin treatment in patients with hepatitis c virus infection is not associated with increased rates of cardiovascular disease, thrombosis, malignancy, or death. Clinical Infectious Diseases 47(2): 198-202. July 15, 2008. (Abstract)

[orleans]

So good to hear from you. Been thinking of you. I started Alinia 7/7, first shot 8/9. So far so good, sx not too bad (nasty rash but it's better) Your weight loss is surly a concern. 30lb is a lot. Do post your recipe. I haven't been as diligent with my pro/prebiotics as I should. Up to this point I have experienced few sx from the Alinia. What was going on to cause you to drop it?  Really is good to hear from you again. jerry

[CockSparrow]

Hi KittyFace
How ya been. Sorry to hear about the sides.

Below is what ML Shiffman has to say about dose reducing. Seems reducing after UND has minimal impact on SVR rates
http://tinyurl.com/5sbws6

It is difficult for many patients to tolerate even the standard duration of peginterferon alfa and ribavirin therapy. Many studies have suggested that at least 20% of patients have adverse events that are severe enough to require either a reduction in the dose of peginterferon alfa and/or ribavirin, a temporary treatment interruption, or a permanent discontinuation of treatment.[22,23] Staying on full doses of these medications for another 24 weeks is often more than many patients can tolerate.

One strategy to enable patients to remain on treatment longer is to reduce the doses of ribavirin and/or peginterferon alfa by small increments. This will frequently ease the adverse events of these medications and enable patients to remain on treatment longer. Several studies have now demonstrated that mild reductions in the doses of either peginterferon alfa and/or ribavirin will not adversely affect the chance of achieving SVR, especially if this strategy is employed after the patient achieves undetectable HCV RNA

By contrast, interrupting treatment for more than 7 days because of adverse events leads to breakthrough and relapse.
Therefore, it is the recommendation of this author to reduce ribavirin stepwise by 200 mg every 2-4 weeks until adverse events either resolve or are tolerable.

Peginterferon alfa-2a can be reduced from 180 to 135 μg/week and peginterferon alfa-2b from 1.5 to 1.0 μg/kg/week. Neither peginterferon alfa nor ribavirin dosing should be interrupted unless the adverse event is particularly severe and there is a concern for patient safety.

Whenever the doses of peginterferon alfa and ribavirin are modified or temporarily interrupted, HCV RNA testing should be performed again to ensure
that breakthrough has not occurred.

Anemia is a common adverse event during peginterferon alfa and ribavirin treatment.
A randomized, placebo-controlled trial demonstrated that epoetin alfa can correct anemia in this setting.
However, a more recent randomized study demonstrated that the routine use of epoetin alfa initiated in all patients at the start of therapy did not improve virologic response, relapse, or SVR.

Although the dose of ribavirin was reduced in 40% of patients in the control group compared with only 10% in patients taking epoetin alfa, the percentage of patients who received more than 80% of the cumulative ribavirin dose was comparable in the 2 groups.

This is because the ribavirin dose was reduced in only 200-mg increments every 2-4 weeks, and most dose modifications were performed after patients had achieved undetectable HCV RNA.

Up to 25% of patients enrolled in large, registration trials required that the doses of one or both of these agents be modified during treatment.
This figure is likely to be higher in less controlled settings.

Several years ago, it was felt that any dose reduction could potentially impair the ability to achieve SVR.
However, it is now recognized that small reductions in the dose of peginterferon alfa and/or ribavirin, particularly after patients achieve undetectable HCV RNA,are less likely to impact SVR as long as dosing is not interrupted.

Hope this Helps
CS

[geterdone]

Glad to hear your feeling better with the reduced meds but if you can go back to the 180 peg and push for the Procrit from the doc. 9.1 is low and am sure it is hard to do anything but lay in bed. I am a 1b and was UND at week 8, 12, and continued to stay UND through out the rest of treatment but I had reduced only the riba at week 20 because of the sx’s until week 44 and then went back to the 1200mg a day. I still remained UND at week 48 and 53 and am waiting on the 6 well 5 1/2 month PCR. It can be and has been done but would suggest pushing hard for the Procrit and at least go back to full does of the peg for the remaining 24 weeks. At to the Flora the first 8 weeks of riba should have taken care of that and then to add alinia to it? What were/are the sx’s of alinia? I didn't add any supps and took my meds straight up. Anyway glad your feeling better or at least as much as you can at this point.

jasper

[Proactive]

It is very well documented that dose reduction is not a good thing. That said, having dropped 30 lbs., your actual dose/kg may very well be the same as when you started..Can you post your weight at start of tx and current weight? (I know, I'm not supposed to ask a woman this question(g)..
pro