Hep C Discussion Forum

Aha! Thank you for the clarification, darkstar! I think I sort of get it; although there's iron in the blood the medication is messing with the red blood cells so it somehow isn't working right?

Perhaps it will actually work out that the doctor messed up the initial dosage!!! Medications DO affect every person different, and I tend to be overly sensitive to some and not at all to others.

Hi Mallani,

I do already understand your spelling! I've lived overseas and, in fact, my stepson lives in Sydney and has been there for almost 20 years. However, I DON'T understand all this medical stuff yet, but thank you for all your help and the tip about the "Forum Abbreviations." 

I sure wish I'd known about the 1,000 mg/day before starting tx. When I got the call to begin the tx, it was so sudden and the absolute worst timing for me to be able to do any research prior to starting. And who'd have even thought that the dosage would be wrong? 

Unfortunately, even if the doctor made a mistake, there is nothing that can be done about it now. If, god forbid, tx doesn't work, I'll now be furious due to the thought that maybe it was his fault. I wonder whether tx could be done again starting with the higher dosage... OR, even though I'm almost 6 weeks in, would it be worth stopping for a while and starting over? 

THIS is a perfect example as to why patients need to be informed...and speak up. 

Hi again Mallani!!!

I thought I'd lost you... Thank you SO much for giving me the info to question the doctor. You seem to know a lot about all this! Are you in the medical field? Yes, I asked my doctor why he started me on 800 mg instead of 1,000 mg. and I didn't like his answer. His first reply was to say that it was probably because I'd had a bad reaction before. When I reminded him that I'd never been on Ribavirin before, he then said, "Well, it's good that you were started on 800 since you are anemic." In other words, perhaps he screwed up? Do you think this will affect my chances of SVR? I read that starting as high as possible is important.

If Hep C does not need iron to replicate, is it more difficult for it to do so in the absence of iron? I've had multiple doctors confirm there is something to this, so am I misunderstanding something?

Am I still considered anemic if my serum iron levels are normal??? I'm soooo confused! 

As far as my Hb dropping further (is that hemaglobin?) and you saying that "...it's really up to you how much you can take," I can and WILL take whatever is necessary! 

Began Week 6 of 24 today...

Hi! 

I don't see Mallani's comment on this post anymore, but thanks to him/her I did some research and questioned my doctor wanting to lower my Ribavirin dose to 600mg/day. Today, he happily agreed to keep the Ribavirin AS IS @ 400mg 2x/day as long as I'm willing to get weekly blood tests, and he had me get an "Iron + TIBC" and "Ferrritin" tests today (results attached) which I don't understand, and Googling just confused me even more.  The IRON + TBIC appears to be in the normal range, but the FERRITIN is high at 327. The doctor's assistant only said not to worry now but, as usual, no further explanation. Aaargh! 

The doc and his "team" who are working with the Sovaldi + Ribavirin patients actually seemed thrilled that I want to stay on the high dose and am willing to go on shots of Erythropoietin or even have blood transfusions if necessary...whatever it takes. Two of the doctor's assistant nurses that are cc'd on any emails popped into the room just to introduce themselves and chat. It almost sounded as if they are too used to patients who whine about the side effects instead of (crazy?) patients like me who say, "Whoo hoo! No pain, no gain...so bring it on, baby, and let's just do this thing!!!" 

AND, the doc confirmed that having early anemia has been shown to predict that a patient is more likely to achieve SVR...as long as it is controlled. (For those of you who don't know, the virus needs iron to replicate so I've always intentionally tried to keep myself slightly anemic by avoiding any food or supplements with iron.) In addition, my having become undetectable within just 2 weeks also bodes well. 

The doctor and a couple of his assistants and I talked again about how this virus can completely debilitate some people without being able to prove it on tests--and I was told about other Hep C patients who also claimed to be very ill but had normal tests who, once clearing the virus, were not ill (aka "crazy") anymore! They are not faking, dang it; and not only does the virus creat brain fog and emotional issues, but it is also crazy-making for sick people not to have validation. Heck, you even question yourself when nothing "looks" broken!!! WHY does SS Disability refuse to recognize this? Somebody ought to let THEM try to live with a permanent case of many of the symptoms of a flu, eh?

OH! His nurse that coordinates with the specialty pharmacy said that many insurance companies are suddenly putting up a fight and turning down almost everybody once or twice before finally approving them, and that this has happened before with other drugs. My doc has staff at the office and pharmacy fully dedicated to dealing just with Sovaldi + Ribavirin insurance issues. (Working with a specialty pharmacy in such situations is a MUST.) It almost sounds like a movie I saw once where a health insurance company employee admitted under oath that it was company policy to maximize profits by always denying up to 3 requests for expensive treatment because people either wouldn't appeal...or would die before completing the appeals process.

Miss Cara... Gosh, you have a low viral load! I hope somebody else can answer about your husband's situation... My thought is, though, that no matter what it is the sooner he gets on treatment the better.

Unfortunately, there is no way to tell you exactly what to expect. One of the coordinating nurses told me today that EVERY patient reacts different...and that women seem to do much better than men. (But that's true even with the common cold, don't you think?) They have something like 380 or 480 patients being treated on Sovaldi + Ribavirin (at the UCLA Liver Clinic,) and she told me that she is having to fill out far fewer disability forms as compared with all past treatments.

My suggestion would be that you and your hubby read through all the symptoms you could possibly have and imagine the worst case scenarios, and then just both determine that you absolutely CAN and will handle it (and each other) no matter what for 24 weeks. NOTE: Some people actually feel BETTER on tx, but I doubt those people are spending their time feeling awesome writing about it on a forum, ya know?  

Prepare for the worst and hope for the best... No matter how I feel, every single time I take my pill(s) I am so very grateful that I have this opportunity to be well again--and I also find it helpful to think outside myself. It is, of course, natural that we each view our own problems as being huge because, well, they absolutely ARE huge to us!!! However, I'm fortunate to have perspective perhaps because my father had MS and was a quadriplegic for over 20-years...and yet HE was somehow always thankful that he "got" to suffer with the best medical care available, in a hospital bed with hoists and wheelchairs and attendants, with a full belly in a warm home full of love and support. STILL, I can't imagine his life... My point is that I can't help but think that anybody who is approved for this treatment is BLESSED to be able to suffer through it! So,you better believe that no matter how bad my nose itches, I am extremely thankful that I am able to afford these meds...and that  I can scratch it; and no matter how bad I feel, I am beyond grateful that I can go to the toilet any time I want (and, especially that I can wipe myself.) Don't get me wrong, though; I still do waaaaay more of my fair share of whining and bitching!

Anyway, I find that I am no more debilitated than before but the symptoms are sometimes different...and they change from week to week. It's been a bit of an emotional roller coaster for me so be prepared for you both being extremely emotional or irritable and grumpy and, if so, just vow to laugh at yourselves and each other and not take it personally. I like to visualize any side effect, including my sometimes-almost-intolerable-grumpiness, as being not me or my problem but simply the agony of the Hep C dragon in its death throes. Hah! I get a light-headed nauseated feeling sometimes standing up for too long, and it's been so bad sometimes in the mornings that I have had to immediately lie down on the floor for fear of passing out. I had a total melt-down and yelled obscenities into the refrigerator while sitting in front of it on the floor, unable to find the peanut butter... (I suppose I momentarily forgot that people with Hep C in Africa don't have the luxury of even wanting peanut butter while sitting on hardwood floors, let alone refrigerators!) I get more winded than usual, my hands and feet hurt and are really cold. The other day I felt as if my feet were half the size of the room, they were throbbing so bad! There have been times where my face and nose itched horribly, my head's (still) in a fog, I've had some pretty nasty headaches and times where the light from the computer screen felt as if it was piercing holes through my eyes, lots of aches and pains, and so on. And, of course, I'm exhausted but can't sleep. What's new? LOL! 

I do find that, as per the pharmaceutical company's instructions, you MUST drink a lot of water or you WILL absolutely feel like hell. I honestly have yet to figure out where all that water goes, though.   It's easier to drink something tasty (duh) and white tea or Rooibus tea are both full of antioxidants and seem to really hit the spot and settle my tummy if I feel at all queasy. I sweeten ONLY with liquid Stevia (because powdered Stevia is, well, just gross.) Also delicious (and good for you!) is fresh lemon squeezed into water also sweetened with liquid Stevia; lemons are cheap by the bag at Costco. I found these truly humongous vase-like drinking glasses at IKEA and equally huge "beer" mugs at the dollar store and always keep at least 2 next to (very sedentary) me; one filled with water, and another one with tea or fresh lemonade--even on my nightstand. ALWAYS. A pitcher or jug would work, too, of course. Because I'm so freaking lazy and tired, I make the tea or lemonade in bulk for a day or two and keep it in the fridge so it's good to go. Glug, glug, glug!  FINALLY...something I learned in college that is actually useful in the real world!

Robert's AMX and Matt Chris... Thanks, guys! 

-- Edited by Mila on Saturday 15th of February 2014 09:48:28 AM

Hi Mila 

I totally agree with Robert, all your numbers look ready to achieve your goals.

The Riba thing needs to be addressed, hopefully you can talk your Doc into keeping it high as possible.

Looking for good results your whole journey

matt 

Hi mallani!

Thank you for the response and info! I have been Googling and also found that dosage (1,000 mg/day for under 75 kg) so I'm also a bit confused as to why I was only on 400 mg 2x/day to start--and I'm not sure why my dosage is being dropped. It's very difficult getting info out of my doctor (who, I know, is very busy with liver transplants and such so I'm likely the least of his worries.) I don't understand the tests, nor what is considered dangerous. When I searched for the recommendations I found the following which suggests that if hemoglobin is less than 10, that Ribavirin be reduced to 600 mg/day.

http://reference.medscape.com/drug/sovaldi-sofosbuvir-999890

The only thing I got out of my doctor's office is that his assistant told me that the reduction would not affect SVR but, DANG IT, I want to see some studies on that and can't find anything!

I'm now thinking of taking my regular dose in the morning and becoming a thorn in their sides. We need to learn to be advocates for ourselves; in fact, I should have stood up to doctors in the past and asked more questions (i.e. when I was unknowling coerced into what I did not know at the time was a STUDYfor the alpha interferon!) I'm at another huge teaching hospital and certainly HOPE I'm not unknowingly in yet another study?!?

Oh, don't worry. I take EVERY single pill like clockwork. I've only missed that one dose, which freaked me out so much that I now have 2 alarms in place (one to eat and then another for the pill/s) AND a friend who expects me to respond when he texts me an hour after just to make sure that I didn't miss the alarms! 

Hi Mila,

Commiserations for enduring 48 weeks of daily consensus Interferon. I remember those Trials and did not volunteer.

I'm a bit surprised about your Riba dose. The Prescribing Information for Sovaldi has weight-based Ribavirin at 1000mg/day for patients <75 kg and 1,200mg/day for patients >75 kg.  Sovaldi is a great drug but is useless by itself, and needs another antiviral to control the RAV's.  Being Undet. after 2 weeks is great, but you need to stay that way.  A Hb of 10.3 g/dL does not constitute significant anaemia, so I'm surprised your Riba was dropped to only 600 mg/day.  Riba rage or rash is not a condition requiring dose reduction. You are taking a great drug but it needs help- forgetting doses MUST be avoided. I hope you can increase your Riba dose ASAP.

We have had patients relapse after being Undet., so struggle on. It's worth it. Cheers.