HELP - this is my first time posting a question although I have been observing for some time. I will try to be succinct as it seems as though you all are so knowledgeable!!! I am 46, weigh 215lbs, @ 5ft 3inches fat as you can see. I started treatment for my Hep C Genotype 1A with a plan of going 48 weeks 1200 Riba/day and Interferon 1x/wk.
Viral load started at approx. 700,000 oh by the way my cirohsis (I can never spell that) is stage 4 of 4 - that ***** right? OK - onward...At 4 wks my viral load went down to 3,600 and I am now at week 12 and it is still detectable at 99. I am not having horrible horrible side effects but my body is not tolerating too well the meds - my WBC is 2.2, my RBC is 3.27, hemoglobin 10.6 and hematocrit 31.4 - ok so studies say to lower riba by 200mg if my hemo goes lower than 10 and hematocrit lower than 30 - I know it is a fine line but my nurse practitioner has lowered me from 1200 to 800 and ordered me to discontinue my interferon because my WBC is so low.
She advised me that I COULD continue on w/tx if i want to and try the meds to increase WBC and HEMO (Procrit) but she said it is not a good sign that I am having to be boosted up by those meds - as I will have to continue them for the duration of tx. So as of now I can take only 800mg riba and NO interferon for at least 2 weeks until my #'s come up.
The main question and most troublesome of all is that she told me that they now know that anyone who is NOT Virus non-detectable at 12 weeks has only a 1% chance of svr post meds which means 99% chance of virus return. I am having a hard time finding this information online and wondered if this is something that others are experienced with? She said she did not want to take away all hope but she is a #'s person and if it were her (which she acknowledged it is not) it would be hard to go through so many weeks of hell just to have the virus return. She said that she has NEVER had a patient who had ANY virus detected at 12 weeks complete tx and have SVR???.
Of course my question was well will it not do any good to have the virus out of my system at ALL like even for a year? OK so those of you who think like I do know that my real question was will it buy me another year to live if it is gone for even a while? She said no.
So I am considering getting a 2nd opinion but before I do that I wanted to check in with the people who are living the issue like me and who are really the most in the know. Even though I have been watching from afar your comments and conversations have boosted me far more than I could say. Thanks for any help or info you can offer.
Find another doctor immediately. You are getting incorrect information from your NP and if you dose reduce now you are risking your chances of SVR.
You do NOT need to be dose reduced. Your hgb is low and the Procrit will bring it back up but reducing to 800 mg from 1200 mg is absurd. Personally, I wouldn't reduce riba dosage with an hgb of 10.6 but would have my eye on the Procrit.
Your WBC is not critical either. What is your ANC? ANC is used to determine whether Neupogen is necessary to bring the whites back up. I am currently on Neup.
Again, dose reduction of Peg is not necessary in my opinion. Dose reductions or skipping doses impact SVR significantly.
They offer Procrit and Neupogen so we don't have to skip doses or reduce. Many people are on them during their entire treatment.
Your NP doesn't know what the hell she's taking about to make a statement "She said that she has NEVER had a patient who had ANY virus detected at 12 weeks complete tx and have SVR???. " That's idiotic to say. There are those on this board who are SVR and did not clear at 12 wks but did extend treatment.
Firstly, slow responders are advised to treat 72 wks as opposed to 48 wks. I am a slow responder. You are responding to the medication and had significant log drops. A vl of 99 at 12 wks is very low and most likely you will be UND by wk 14. With the amount of liver damage you have, extending is the your best option, actually your only option for the best chance at SVR.
You want to give yourself the best possible chance at beating this virus right? Then do yourself a favor, don't dose reduce and find a good hepatologist immediately. Take all your medical records with you. Otherwise, if you dose reduce or skip doses and only treat 48 wks your chances are greatly diminished of ever reaching SVR.
Do it now, while you still can.
BTW, people can live long lives with cirrhosis. It requires modifications and there is no gauge to tell how long each of us will live when our liver is compromised.
Thanks so much for your comment - I was concerned by the big drop - as of now I am 1 day past my shot - she said that the #'s were low and I did another shot before they called me to disc so she assumed that they had probably gone down further. But info that I read said only dose reduce in 200mg increments at most. my Absolute Neutrophils is 0.70 (normal 2.00-6.90) and my neutrophils% is 33 (37-80). You know I have always thought this lady was thorough and knowledgeable but today (because I was in her office) i told her I thought I might have shingles on my lower back/upper rear. She said well I don't really see herpes so i might not know the best med and really uppity said "i mean i could look at the sore on your butt if you want me to but I dont see herpes very often" menaing i should go to my gp. I told her that i was under the impression that the symptoms i was having were sides from liver meds and that is why i called her as she suggested i should. Just assumed that a good bedside manner was not that important if she knew her stuff.
I wish I had more time to respond, I'm rushing off to work. Your situation concerns me. I only have time to ask some questions.
At Stage 4, 4 - I would be telling her you want the procrit, not a dosage reduction. Plenty of people have to go that route. I'd be asking her for that instead of reducing your drugs. That dosage reduction is too EXTREME.
As Trinity asked, what is your ANC please? Do you get copies of your blood tests?
When is your next interferon shot? Tomorrow?
I would also encourage you to get a second opinion ASAP - it will be said by others, but I'll say it as well - go to a teaching hospital and see a HEPATOLOGIST. Call TODAY. That ribavirin dosage is too low, in my humble opinion and you have a shot at SVR if you don't dosage reduce unnecessarily.
I'm going to check in on you later on as I'm hoping to see you've got really good advice coming your way.
Your situation is challenging. With cirrhosis, treatment must remain aggressive. Your NP is treating with standard protocols that are out dated.
Procrit is available for low Hgb and it should be on standby for you right now. It takes several weeks for it to work.
Most hepatologists do not become concerned until ANC is below 500. Yours is getting low and if ANC continues to drop, Neup is available and fast acting.
Platelets can go as low as 200 and a good hepatologist will continue treatment. At least mine would.
You need close monitoring and good liver specialist (hepatologist not gastroenterologist)
to guide you through the rest of your treatment. Hepatologists can be found in teaching hospitals in most large cities.
You have to do what you feel comfortable with but I speak from experience when I say dose reductions impact your ability to become UND and SVR. I had to two peg dose reductions in April 08 and did not UND at wk 12. Was advised in Nov 08 to dose reduce again. I did not dose reduce in Nov. 08, went on Neupogen and have remained UND since last PCR at wk 24.
Your treatment is going to require tailoring and commitment. It's not going to be your run of the mill tx. If you have to travel a long distance to see a hepatologist, than do so.
I did and it was the best decision I ever made.
As 'Trinity' suggests, try and see a new doc immediately, preferably a liver specialist (hepatologist). Your blood work looks fine and helper drugs are available and preferable to dose reduction as dose reduction can lower your chance of SVR. You will also need a liver specialist to best determine how long to treat.
All i can say is WOW....seems like you are not getting the proper health care...do you live in jungle somewhere?...kidding...ive never seen this kind og incompentece by a Doctor before...TX for 72 weeks and increasing dose is the right way to go here...not dose reduction and 48 weeks...UNBELIEVABLE
No not the jungle - seattle and one of the largest gastro clinics around. Have NEVER seen dr. though only NP. I have found a hepa clinic at U of W but think it may take quite some time to be seen. Have considered trying to be seen by actual dr. at this clinic in the meantime but doubt if they will go against their own np - never know. I am somewhat hesitant to go against her recommendations at this point because dr's tend to frown on that and it can be somewhat of a political relationship as im sure you all know. Should I take my riba back to 1,000 and just do it? I know of course that you all would be hesitant to tell me something like that but if it takes time to see new dr. am worried about consequences. Do you suggest I just follow her instructions and find someone as fast as i can? Geez what a cluster ****. Out of curiosity has anyone ever heard this 1% statistic before? If you are not und by wk 12 only a 1% chance at svr? She did admit that there are "some physicians who recommend longer tx like the 72 weeks" but she said they don't really have #'s to support it?? Thank you all so much for your input it means so much. I really want to get well and I guess I have my answers about my np because if i really had faith in her i would not be posting these thoughts would i? I am a reasonable person NOT someone who goes from place to place until i hear just WHAT I WANT TO hear. Tracy
By the way i just want to be clear that the np is not just suggesting dose reduction she is suggesting that i d/c treatment all together given the fact that i am still virus pos (99) at 12 weeks. With a chance of svr only 1% she thinks it is not worth it for me to continue at all.
Reading your initial post put the hair up on the back of my neck! I hope you are able to get a new doc (a liver specialist - hepatologist) as soon as possible. As Trinity said, I do not like your NP either!
Best of luck to you. Please keep us posted on your progress.
Run, fast. FAST FAST FAST to the nearest doctor you can. Do not discontinue your meds or reduce your dose based on what this twit has told you.
I am one who did not succeed in reaching UND by week 12. I did a lot of studying and with the help of the people here on the forum found the studies that supported me extending to week 72. This was a long time back when it was not common practice yet. The studies are called Sanchez Tapias and Berg that we mostly use to show how important getting UND as close to week 4 as possible is and that extending to week 72 can give you GREAT chances of success. Funny how the NP doesn't seem to know much about them.
I have been cured for over two years. I never dose reduced even when my hemo plummted drastically. I upped the Procrit and got those numbers up.
As you said you aren't experiencing too many side effects - I simply cannot cannot cannot understand why they would advise you to give up at stage 4 cirrhosis (dont worry about the spelling it takes all of us a while to learn that one). 1,000 riba for someone of your weight sounds VERY light to me - I was 5'7 and 120 pounds and the doc gave ME 1,000 (should have been 800 but I asked for the one extra a day to make sure).
The fact that you are talking to an NP and not a doctor this late in the game when you are having difficulty with your results is astounding and has to make you wonder what is going on. The doctor should have been called IMMEDIATELY and hopefully at least he would be more up to date on the current scientific advances and not giving advice that is five years old at least.
It's just my opinion but I would stay at that 1200 minimum (and like I said you should be on more I think) and find another DOCTOR to see right away. There has to be at least a GI in your area with a lot of experience in dealing with hep patients. These people are living in the stone ages.
I am somewhat hesitant to go against her recommendations at this point because dr's tend to frown on that and it can be somewhat of a political relationship as im sure you all know.
PS Tracy you've gotten great advice from all of the people who have so far responded. It's against our nature to go against doctors because we've been brainwashed pretty much into believing they know all. But in this case........you really don't even have a doctor you have an NP and there is a difference.
Google up the two studies and bring them in and dont give up. Many of us have found that we had to be our own advocates with this disease and have gotten incredible results from doing so and have succeeded - even when we were in the olden days percentage of being the ones who would not. Things HAVE changed and it's just sad that they are not up to date enough to know it.
Don't give up. Ask around in here.......a LOT of people have been through this and after it's over have been quite proud of the fact that they managed to save their own course of treatment and gotten SVR.
Tracy, there more knowledgeable people on this forum than me so I'm not going to get into the treatment specifics, etc. but I do want to say that, in some cases a doctor will have a patient stop treatment if they are not clear by week 12 but, in your case where you are 4/4, I believe there is more that needs to be looked at than just whether or not you are clear by week 12. This is why your particular case would seriously benefit from a second opinion from a hepatologist. If the second opinion comes back with the same recommendation then at least then you won't always wonder if you did the right thing. But...I have a feeling that a hepatologist will have a different opinion.
You got great advice here. All I want to add is that with an ANC of .7 you do NOT need to dose reduce. You do not even need neupogen until you go below .5. Please find another doctor immediately. If you need help call the Hepatitis Education Project and ask for Michael. Tell him Susie sent you. They are on Western Avenue in the Maritime Bldg. (206) 732-0311.
You guys are amazing thank you sooo much it just seemed so doom and gloom to me. To be honest w/you I have never seen the dr at the clinic - the np administers the program for the most part i guess because the dr.s in the clinic find the run of themill hep c tx too boring. I guess if it takes too long to see the hepatologist then i could try to see one of the gasto's but medicine is so political that they never want to change another clinicians orders. Thanks for the names on the studies i will absolutely google. I was a little thrown off because she was so defensive with me like she acted like she did not know why i was there she sat down and said duh do you have any questions or concerns and i said well yeah - you told me to dc my shots. Her response was yeah because your numbers do not support you continuing! I will go in search of a doc as soon as the offices open thanks again!
response was yeah because your numbers do not support you continuing"
Good for you Tracy don't give up because this lady is WRONG. I started with a pretty low viral load too like you (568,000) and sometimes it is harder for us to clear than the people in the 20s of millions. Why? who knows, we've guessed at that in here for ages.
But for people like us who did go the extra mile it worked. Nobody ever told me to give up (and at week 12 my VL was 419) in fact my doctor knew I wouldn't. He worked WITH me to come up with a plan to keep me going and that is just what a good doctor is supposed to do. Treatment should be tailored not a one cookie cutter approach - we are all different.
Your on too little riba and need procrit. That's a pretty easy one to fix and I bet if the doc did you'd be UND no problem by 24 and fall into the right parameters to continue and succeed.
Don't wait - you are already a day over shot day and that's not good, that virus will come roaring back in fast if you let it. SO DONT! :)
Tracy, I had to switch docs too (with the urging of people on this site) and it was the best thing I ever did. It was hard at first for me to accept that it would be okay to switch docs but, when I did, there were no problems associated with it and it was the best thing I ever did for myself regarding my Hep C.
My switch came just before I started TX and my new doc did change the medication order and the lab orders that the original doc wrote. If you find a good doctor, he/she will have no problem changing medication orders if they determine it necessary to do so.
Your starting dose of ribavirin was 1200 mg / 97.7 kilos = 12.28 mg per kilo, which you were on for about twelve weeks.
You've now been told to reduce your riba to 800 mg or 8.18 mg per kilo.
Even if you 'only' reduce to 1000 mg, that would be 10.23 mg per kilo and you haven't reached UND yet.
It's my understanding that the ideal dose should be 13 to 15 mg per kilo, at the very least until reaching UND. I was on 17.5 mg per kilo my entire forty-eight weeks and my doctor prescribed it without my asking.
Your nurse has a very radical approach compared to mine, who never batted an eyelash about my fluctuating numbers during 48 weeks of tx. I'm wondering if you have any other medical issues like cardiac ones that are causing her to react like this?
Otherwise, I'm a little stunned that this is happening in Seattle and it would certainly make me sleepless. Unless there's a key health matter that you haven't shared with us, I don't like your nurse either.
For something as critical as this, I urge you to insist on going above her and see the doctor pronto. TODAY. And if possible, I'd find another medical team asap.
Unless there's a health issue you haven't mentioned, I can't understand her approach.
My NP attended three liver conferences (Milan, San Francisco and Copenhagen) during my 48 weeks of treatment; she's in the loop and pretty cool, in my opinion.
Good luck. You have a lot to do today if you're up to the challenge. As a stage four, I'd try my darnedest.
ok 1 last question - I have my meds in the fridge - if you were me would you go ahead and do the shot anyway??? Because after reading all of this I am not 100% opposed to it.
Oh Tracy in my opinion I agree with JD above and with Portann's statements and I would definitely do it. You have a chance to succeed still and with cirrhosis you HAVE to be aggressive (unless at PA said you have some underlying medical condition we don't know about?). Now we aren't doctors any of us in here but with a VL of 99 and too low a dosage of riba I really think if they had just realized in the first place you weren't on enough of the stuff it might have made all the difference.
Taking the interferon is not going to tank your hemo any further, that is the riba as you know. If you continue on with the meds while you find a doctor who gets how serious your case is you have a shot. If you stop you have none. Why would that nurse, knowing you are cirrhotic tell you to stop? Even IF you are to need a transplant someday you aren't going to want the virus to destroy the new liver - it's totally in your best interest to do everything possible to get rid of this disease NOW.
I would a. get on the phone and INSIST On speaking/seeing the DOCTOR and ask him what's up with this situation. then b. I would get on the phone and find another doctor immediately. You have no time to waste but you do have a little window where you still have the meds and can work things out.
You just can't give up (which is the easiest thing to do and we all know it). Advocate for yourself - it's not fair that we have to do these things on treatment but it's just the simple fact of how it sometimes goes. KNow that you aren't alone though MANY of us have had to work hard to do this same work.......I did myself and it worked out perfectly in the end.
DONT GIVE UP it's time to get on the PHONE and work it girl!
My NP said it was fine to take my shot a day (or two?) late, especially later in tx, although I would have died before doing it late.
Once you make enough headway to rest easier, I'd send a private message to Pam (JustMe53). She's also a stage four and her very cutting edge doctor put her on such a high dosage, it had me wide-eyed. And she seems to be trudging on with the high doses and getting great results. Her doctor knows her health profile and believed she could do it.
Excellent Advice from you people...im impressed....i still cant believe what this nurse told you....DO YOUR MEDS im in a trial and they said they would let my ANC go under .5 and still continue...you have to the doc...forget his nurse
Tracy....."the np administers the program for the most part i guess because the dr.s in the clinic find the run of themill hep c tx too boring. "
My TX was run of the mill boring, if there is such a thing. geno 2, 24 weeks of TX and done, I was lucky, I cleared. My dermatologist was more excited than my GP and my gastro put together. The derm Dr's response was " You just fought the fight of your life and won" I think we are all in the fight of our lives.
I am not the most knowledgable BUT my hemoglobin went down to 9.3 and rescue drugs were never mentioned. Everything dropped.
I would take the shot, Iand the riba original dose, honestly hope you did by now. Nygirl & Trin have both been there and others have too. Good Luck and keep asking questions!!
I am by no means an expert (I will leave that to others better qualified on this website)but a VL of 99 at 12 weeks is NOT predicitive of a 1% chance of SVR. Depending on when you actually reach UND status, how long you treat, and several other factors, your chances are much higher!
Like others have said, give yourself the shot, continue with 1200 mg. Ribavirin and do not sleep until you find a better doctor!
Best of luck to you.
I'm going to chime in here and say I would at the least do my interferon immediately.
You can take a dosage reduction of 7 days without impact after the 12 week mark so I'd at least up your riba to 1000mg. I'm hesitant to tell you to pump it up to full 1200mg but damn, take your interferon. You have 7 days of grace with the riba. If you want to pump it up to the 1200mg, that's a call for you to make based on how you're tolerating. If it were ME, I'd pump it up to the 1200mg and be pushing hard for procrit. I took a one week ribavirin dosage reduction at Week 15 and then went on procrit.
If it were me, I'd be calling for a 2nd opinion and in the meantime, I'd be calling the NP and saying I don't want a dosage reduction and that I want the procrit to prevent further dosage reductions. There is nothing at all wrong with going on procrit, so have her spell out what her issues are with it. Don't just let her get away with saying it's a "bad thing", make her tell you WHY she thinks it's a bad thing. Then you tell her that you're aware that a number of people on treatment also are on procrit so that they don't have to have dosage reductions and that adherence to treatment dosages is an important part of treatment success. She may tell you that procrit is known to cause problems and you tell her that you're fine with doing the necessary blood tests until your hemoglobin stabilizes and you can potentially go on a maintenance dose of procrit or stop it entirely if you respond well to a maintenance dose.
Your ANC count does not at all require an interferon reduction, let alone a stoppage. That is not in the danger zone. It does deserve monitoring and tell her you'd like to discuss adding neupogen to keep the ANC from dropping further.
If she disagrees with any of it, stand your ground and let her know that you'd like to talk to the doctor about it and LET her be pi$$ed off about that.
I asked my NP for procrit and she disagreed with the need for it. We argued back and forth and she finally agreed to pass it over to the doctor. Know what? I got my procrit. He listened to my reasons and gave me the procrit.
I will pull up stats for you and hope others do too but her stats on 1% SVR are incorrect.
My lunch is over. This one really has me pi$$ed off and good luck to you, Tracy.
Okay so to respond to some of your final stuff - I have no underlying medical issues beyond the shot liver and the fact that i am obese (5'3/215 lbs). In her opinion it is a combination of all of my "levels" that have warranted this decision. After these numbers came out the wbc2.2/ rbc 3.27/hemoglobin 10.6/hematocrit 31.4 and platelets 80 she asked me to hold BUT I had taken my shot AFTER my blood test by about 12 hours - so she said she would have to assume that the numbers had dropped even further.
The crazy thing is it was really my WBC that she was basing her decision on as it had gone from 2.7 down to 2.2. From my prior blood test my hematocrit had gone from 28 to 31.4 and my platelets had gone from 68 to 80 - so those numbers had actually come up???
I asked her if i could go upstairs and have the blood drawn again yesterday and she said no since it had only been a short time since my last shot and the med stays in your system for so long that I should wait until further post interferon - june 1. I am getting on the phone in a couple of minutes.
She said that the blood count numbers can be very volatile and she has to be safe than sorry. She said I can walk you down a fine line but if you are so close to the edge all of the sudden you crash and get a call in the middle of the night from us saying you need to be in the hospital because your numbers tanked.
Anyway thank you all for being so thorough - I wish I could forward this thread to her but sadly i think she will just be defensive.
In re-reading, my statements on procrit and neupogen are not clear.
Procrit is often taken once a week when you start and it's an injection. It usually takes an average of 3 weeks to kick in. You have to monitor and get your hgb tested after starting procrit because once your hgb goes above a certain level, then you have to ease off on the procrit. Some docs/NP's stop entirely but then the hgb tanks and people have to start again, so a maintenance dose is often the better way to go, i.e. easing off to every two weeks or some such thing. At some point, people may be able to stop the procrit completely.
As for neupogen, I'm not suggesting you need it now at an ANC of .7. I'm suggesting that if she's insisting on interferon stoppage / reduction, then bring up the neupogen discussion as the appropriate alternative and bring it up anyway so that you have an agreement in place to start neupogen if your ANC does get down to an unacceptable level. Neupogen is faster acting than procrit and you usually see results within days so neupogen is a decent alternative.
If I've mis-stated any of the above, someone please correct.
The general rule of thumb, Tracy is 100% of the drugs 100% of the time as much as possible and not below 80% of the drugs 80% of the time, always striving for that 100% as much as possible as long as your health is not at risk from the treatment drugs themselves.
I really hope you can make some headway with getting better care from someone who knows more than this NP does. Good luck.
I have cirrhosis also. My last treatment actually brought my WBC down to .8 and my neutrophil count to zero. It was a critical situation. I was hospitalized for quite a few weeks that summer. I agree with what most have said here but I sure wouldn't want you to do it without a physician watching out for you. Even if you have to use your primary care doc for the next couple of weeks, you need to be monitored. I wouldn't take any more medication unless you are sure you have someone to check a CBC for you in the next week. In cirrhotic patients those numbers can go south in a blink of an eye. The week before I crashed to no neutrophils, I had a count of 2000. Please be careful.
Your nurse is not an idiot, but she needs to be a bit more compassionate following the guidelines due your 4/4 liver damage. 12 weeks is a marker in that people who clear by 12 weeks usually get to SVR, but there are others who don't make the marker and still clear. You did get fairly close. The 12 week marker is all over the internet.
You know your weight is a problem. You started with a nearly low VL and should have cleared by 12 wks., but you didn't. Excess weight can make you less responsive, but it also affects your riba dosing. If you reduce, you may not be getting enough for your weight. Your blood responses are absolutely typical. I would consider neuts at .7 (700) to be low. Besides neupogen, there is a pegylated version of the drug called neulasta, which lasts for 3 weeks. I'd request to use one of those, the neulasta or neupogen, to bring the WBC (75% of which are neutrophils) back up to safer levels. Reducing the interferon will also bring neuts up but there's really no need to do that unless your platelets are low. The low neuts can be brought up with the rescue drugs, but platelets can only be brought up by interferon reduction. The drugs are expensive. I hope you have insurance. I feel that most of us on this forum would always prefer rescue meds to dose reduction.
Your hgb is low, but not of concern until you drop below 10. Procrit shots (3-5 of them, once weekly) will fix hgb.
"She advised me that I COULD continue on w/tx if i want to and try the meds to increase WBC and HEMO (Procrit) but she said it is not a good sign that I am having to be boosted up by those meds - as I will have to continue them for the duration of tx."
This was a foolish thing for her to say and untrue. Everybody has falling levels from the meds. Everyone needs a little extra help to manage these VERY common side effects. I've been treating very successfully for 7 months and never ever have been able to maintain without the rescue meds. It's not weird; it's typical. I'm a 3/4. I'd keep going if I were you. Talk directly to the doctor if you have any more problems with her.
I wanted to clear maybe some confusion - she has given me prescriptions for both the neupogen AND the procrit yesterday but does not want me to take the interferon until I use the procrit and neupo and the #'s come up. She did not say that i could not take these meds but that i would most likely have to take for rest of tx which will make my liver have to work even harder.
Her WHOLE argument was that with a svr chance of only 1% that maybe it was not worth it for me. I told her that I was not ready to stop that I wanted to continue for at least 3 more mos. and she said fine BUT still do not take interferon until WBC comes up...So she did not say no to me just that it was going to be a whole lot of work for very little odds. I thought i was clear in my first post but...it is a lot of info to try to pass on.
You're right, I missed that part. They always want you to use the neupogen before the interferon and usually do more bloodwork to see that it has worked to bring up the neuts. It's possible that it might not work in you (but it usually does) and then they'd need to reduce the interferon to correct ANC. You never take the 2 shots on the same day. I don't know if it's a safety issue or just a monitoring issue. A few days delay on the interferon will also improve your numbers.
Another thing to think about is that as the interferon kills virussed cells, it replaces them with clean new liver cells. As long as the virus is reproducing, it can infect those new, healthy cells. If the virus is eradicated, the new cells can remain and begin improving your liver function. Even if you don't clear, at 4/4, you should be able to get ahead of the damage to some degree and improve your liver function. Then if you have the stamina to go the distance and you DO clear, your liver will actually begin actively breaking down the old scar tissue.
Treating for a 4/4 is a win/win situation. You can get a little better or a whole lot better.
ANC in not critical enough to stop interferon or even reduce at this point. Neup is fast acting and you do not need it yet. Platelets are still ok too. If ANC tanks, have the neup ready to go but you'll need to be monitored very closely regardless because of your liver stage.
I'm wondering if you've made your phone call to the doctor or better yet, been in to see him in person. Any update?
As you can see from the input on your thread, this is a complex issue, especially given you're a stage four, were underdosed on riba from the outset and have a BMI of 38.
The stickler for me is why your nurse would have said you only have a 1% chance to SVR. This raises a red flag to me - it's either an error or misunderstanding. It makes me question her level of expertise. Did she explain?
Jenny brings up an important point that I didn't know, that stage fours may be prone to plummeting numbers more than others.
Still, note that Pam is a stage four (and possibly insulin-resistant) and taking huge doses by comparison. She is in the hands of a very knowledgeable team closely monitoring her and treating her aggressively because of her stage four. The quality and expertise of your medical team is crucial.
I don't understand the rationale for underdosing your riba from the get go (12 mg per kilo), given you say you have no other health issues. This could have played a role in your not reaching UND by week twelve, even though you were very close (99).
Have you been tested for insulin-resistance? Given your BMI of 38, it is possibly something important to consider in your treatment plan, along with your low riba dosage.
I would not or cannot advise anyone what to do but I myself would not skip a dose before reaching UND, as long as my medical team were monitoring me like a hawk.
In the studies, safety cut-off is 750 (.75) for ANC. Calls for dose reduction if no filgrastim is used. Not everyone gets a bacterial infection from low neutrophils, but some of us do. I got a kidney infection when neuts dropped to 558. Never had a kidney infection in my whole life; don't ever want to have another one. Besides the pain and high fevers, antibiotics interact with my meds and are nearly unbearable to take. .70 IS tanked. Bad idea to ignore ANC. Might be okay, might get very sick.
There's much debate and disagreement about ANC levels on the forum.
I can only speak to my experience and my hepa's guidelines. Unlike in many studies, it was made clear to me that my SOC tx plan would include neupogen and procrit, if needed.
Officially, my nurse was going to go on alert at 500 but not necessarily intervene until 300. So her cut-off is much lower than the studies Newleaf mentions. My neuts bounced around so much, we couldn't tie it down from one week to the next. She said neupogen acts quickly.
Not every team is this 'cavalier' but it worked for me, I never did get sick with an infection and I went as low as 500 before it bounced back without rescue drugs. It was actually normal at EOT.
It would be horrific to have a kidney infection, unbearable, but I didn't get sick at all during tx, despite my nasty low numbers. My family did, despite normal numbers.
Each medical team has a different threshold. I had similar problems with reoccurring bacterial infections before Neup and haven't had any since taking it.
I don't think skipping doses is advisable as recommended by her NP. The Neup is available and peg dose reduction or skipped dose is not necessary.
You have mentioned your kidney infection a number of times and I have mentioned my bacterial respiratory infections and number of times but this is exclusive to us and doesn't necessarily apply to everyone a supported by medical data which states people with low ANC due to HCV treatment do not have more infections than those who do not have low ANC.
I do believe she needs to be monitored very closely, but her NP in my opinion is an idiot. She does not think outside the box and her overly conservative approach to Stacy's numbers may very well be detrimenal to her attaining SVR.
Thank you for your input - Refering back to my original post i dont think that the riba was underdosed from beginning - I have been on a level of 1200 from the beginning which is what I put in my post - the question i had was even though the recommended reduction comes at hemo 10 and hematocrit 30 my numbers were still above that. And even if she wanted to reduce me i was curious why she reduced me by 400 instead of just 200 when it says that you should go in 200 mg incrfements. Sadly I did not do my majore research until lastnight and I saw the nurse just yesterday. She prescribed the neup and procrit yesterday - waiting for insurance approval. 4/4 is a consideration in volatility of #'s i do know that AND with my #'s at 10.6 and 31 (then i did a shot 12 hours after those #'s) she assumed that they had probably dropped further - however as i said numbers had gone up so not sure that was a good assumption. SO I have called every hepatologist I can find with no luck on being seen quickly. I HAVE managed to at least get an appointment for Monday afternoon with my NP's supervising physician who is a gastro. Not ideal I know but at least a step. I will continue to make calls today to see if I can find someone else but given that it is thurs already monday is pretty fast (not for me but in dr world). Tracy
Take the meds until you see the supervising physician at least.
1200 has to be low for you because - I was taking 1000 and I was 5'7 120 pounds, 200 isn't any difference really in that regard. That is what people are trying to say they are confused why they started you on such a low number and then why they would reduce that further when you are 4/4.
My pharmacy was excellent at helping me get my procrit approved. In fact my insurance wouldn't approve but the pharmacist helped me get the epogen approved (same thing generic). Epo costs $6000 a box for ten vials and I was using 2 40s a week so.....sometimes they can try to hold you up.
Take the meds or you have a zero chance of success. That's not even a joke (and I tend to exaggerate a lot).
I agree with you that it's very odd the nurse told you to reduce your riba by 400 mg in one shot. Another red flag, even setting aside the issue of dose reduction at all. Combined with her 1% comment, it would leave me sleepless AND speechless in Seattle. I think she's mixed up, unless there's some information we don't have.
Good work on all your phoning today. I found it really tough to make things happen during tx, so I'm impressed at how pro-active you were.
My medical team was on the ball, so I didn't have these dreadful hassles.
Trin had to muster up the energy (working full time) to go see another hepatologist a very long drive away, whose opinion overrode her local doctor's. Her local doc had dose-reduced her at one point and then didn't want to extend.
As for your weight-based riba dose, this is what I calculated for you previously:
1) Starting dose of ribavirin, 12.28 mg per kilo (1200 mg / 97.7 kilos)
2) Reduced riba as of now, 8.18 mg per kilo (800 mg / 97.7 kilos)
I may be wrong but the ideal dose is 13 to 15 mg per kilo, at least until reaching UND.
Someone may want to check my calcs and comment on whether 12.28 mg/kilo is or isn't weight-based. It's close to 13 but not within range.
I know Rain is on more riba than you and seems to be hanging in there pretty well.
1400 mg would put you at 14.32 mg/kilo, less than I was prescribed (17.5 mg/kilo). Trin takes even more and is on a 72 week tx program.
Anyway, there is more to your treatment than just riba but I'd sure want to know why I wasn't started on weight-based dosage as a 1A, stage four.
I hope someone can offer some explanation other than this being a plain mistake. Do some doctors steer away from more than 1200 mg for other reasons, regardless of weight?
Please don't get discouraged. It's a lot to think about but as you said, do it in steps.
Jenny really knows her stuff, so please try calling the number she gave you:
Jenny: "If you need help call the Hepatitis Education Project and ask for Michael. Tell him Susie sent you. They are on Western Avenue in the Maritime Bldg. (206) 732-0311."
Neulasta costs $3-4000, drives up neuts within hours and the effect lasts at least 3 weeks and requires insurance approval. My ins. co. needed to fax a form to the physician and then get it faxed back to them. I got both neulasta & neupogen approved. Be proactive. My med staff people were university people who weren't used to dealing with ins. cos. and were a little slow. Yours will do better but it's worth calling both the ins. co. and the doctor's office to be sure the paper work is acrtually bouncing back and forth and not being held up anywhere.
Trinity, I'm sure you are right about varying cut-off levels. The drug companies are probably a little cautious with study patients so their data will look as good as possible. I read a study that said keeping neuts up was not important because in their study group of like 110 people, no one got an infection. I think they just had a lucky group. You and I prove it's worth watching. Bad enough to feel lousy for months but to be certifiably sick on top of it is unbearable.
I am just amazed at all the responses you got in such a short time, almost all from women. You really struck a chord with us. We want you to do well and we mostly disagree with your care. We are NOT doctors but boy, this must be one of the best-read study groups I've ever seen. It's hard to keep everything straight in a post and impossible for us to understand all of the factors involved in decisions. It takes at least 12 weeks to comprehend everything that's going on and develop the confidence with medical personnel to even question things. Please keep in touch, we'd like to know how everything shakes out.
No kidding, you guys have just blown me away, there is so much information on this thread. It is wonderful to see you all jump in to support Tracy, and I have learned a lot in following along.
Tracy, I'm not nearly so knowledgeable about all these issues, but did want to say that I, too, will be rooting for you to push through this and to be successful in your treatment. That is one of our common bonds here, we all want that for ourselves and for others. Just wanting to send warm wishes your way.
Some positives from your comments - that you will be seeing the GI on Monday, that you're working on getting a 2nd opinion while waiting to see the GI.
Also, didn't realize or pick up that your NP had already given you scripts for procrit AND neupogen. I hope you get these in your hands soon. If your GI and NP insist on forcing a dosage reduction, then you want to be on the neupogen to bring up your ANC. Also so that you can bring it up to prevent your ANC from tanking further in light of comments from Jenny Penny.
Procrit will take awhile to kick in and as long as you're watching your hemoglobin levels so that you don't go above the cutoff point, I don't see the issue.
Good work on getting an appt with the GI on Monday already.
What I don't understand is why the NP pulled your interferon entirely rather than dose reduce that if she was concerned. Seems extreme to completely remove it. Your call on if you take a partial injection, no injection or full one. I know what I'd do regarding my dosages in the meantime, however we all make our own calls on that and you have the right to make yours. You've been presented with plenty of opinions! It's always a very hard call to determine what we feel is right for us especially when strong voices pull at us and our potential outcome weighs on our shoulders. Just know that we're all pulling for you and hoping this goes well for you.
If you are in Kenmore get into the U.W medical center.
If you get on their web site it will give you a list of all the hepatolgist their back grounds and specialties.
Dr Carthers (maybe not spelled right) is the head of Dept if you can get into see him that would be good.
I agree with all info above. I am on all rescue drugs and was never taken off tx.
Think you may need a different Doc.
Neulasta costs $3-4000, drives up neuts within hours and the effect lasts at least 3 weeks and requires insurance approval.
I had a strange thing happen with the neulasta and the neupogen. I was started on neulasta because it is long acting. However, I never responded to that. After 6 weeks of neuts at zero, my hematologist said no more. I asked her to try neupogen and she wouldn't. I fired her and hired her partner. He agreed that the neupogen was worth a try. It started getting my counts up the first week. Of course, I took it every day. So neulasta does not work for everyone and not in the first few hours. My bone marrow was so depleted that my bone marrow biopsy showed almost no stem cells. It was very scary.
The thing that turns the neulasta off is when the counts begin to rise. It will supposedly work until that happens so 3 weeks is just an approximation.
Like you, I had a bad infection. It was in my sinuses. Hep patients don't usually get infections from low neutrophil counts unless those counts get below 150 or so.
Sorry you are having to deal with all this. You have gotten some great advice, so I am not gonna add to that, but I did want to chime in on doctor/patient relationships.
I am in a trial at the Mayo clinic. I have always had a back up hepatologist on standby in the event that I was dropped from the trial. I was up front from the beginning that I wanted to do this once and they knew I was going to be where I was getting the most agressive care. I am (mostly) always respectful in making my needs clear. To date, I haven't had any ill will from either office. So, it can be done...don't wory about doc politics. Kicking this virus is most important right now. I figure there'll be plenty of time to apologize later if needed, lol!
Thankyou so much - I passed out about 2:00 and just woke up as i had a VERY sleepless in seattle night!!! Okay so last update - I think provided the referral goes well i MAY be able to be seen at hepa office at univ of wa withing a couple of weeks. Also pharmacy called me back. I dropped of script yesterday and insurance approved at 100% (of course with this disease i am at my out of pocket $ max) - so that is great news. I will be using the Neupogen tomorrow and the procrit will not be available until monday. Not really so worried about the procrit because as I said those numbers were on the rise. I have been scared to take my interferon but because I have a lab form for a CBC on June 1 so I will more than likely go ahead and do the shot.
Again thank you all so much you have been clear,concise and so helpful I am touched. My NP said that my liver would not regenerate that at 4/4 there is still more liver that is not working than is and that that would never change. I thought the liver could regenerate. I guess not but If i continue to have the virus then whats left of my healthy liver will be screwed - as I said i went from stage 3 fibrosis w/borderline cirr. to 4/4 in 5 years! Girl power - thanks so much
My case is almost identical to yours. Opinions vary, but on the threads bellows you will find the latest study done on the subject. It showed that at least with the people studied the amount of time one was treated after going UNDetectable had more to do with whether they successfully reached SVR than when they went UND.
Read this thread READ THE STUDY at the top of this thread.
Of course, this study ran contrary to current thinking, which was almost exclusively based on the mandatory 48 week cut off that insurances were imposing.
I was stage 3 or 4, depending on which report one believed, so my second opinion doctor brought up the 72 week study which had just been published that month, that he hadn’t even had time to read…that was one year ago. And now you have that study.
This then changed my hepatologists mind, and the insurance approval went fine.
I stress you should PRINT OUT the study and take it in to your doctor.
It is harder to deny treatment to a patient, for both docs and insurance, when the patient knows the facts, and could thereby contest a denial of care.
You got a lot of good advice above, BUT THE STUDY is crucial. Also, you should try for a liver doc, but they take time to get in to see…try for an emergency consult with one, and stay on meds until then…and at your weight, mine as well, 10.5 HGB had me very breathless…they can prescribe procrit before you reach ten…more mass means you need more oxygen and will fell worse than a thinner person at that number. Procrit is also approved for medicare at 31.5 hematocrit, so you now meet even medicares stingy guidelines. You should get on it ASAP, it takes a while to work.
I’ve also spent the whole time on tx watching my diet and insulin levels, but recently discovered (from Cowriter) that the A1C test will not be an accurate test for the anemic.
It’s measurement is based on blood cells, and since you have less it may be off by 10-30%. www.labtestsonline.org/understanding/analytes/a1c/glance.html
HCV PEOPLE have higher statistical rates of IR and diabetes and much research now suggests a connection between HCV and the shutting down of the entire endocrine system, thyroid, pituitary, and pancreas are all effected. Since you are overweight, you may very well be Insulin resistant, have IR. This is a common cause of weight gain.
This and your stage of disease are two things that can negatively effect your chances as too short of a treatment course.
A more accurate assessment for your true IR risk would be to get a fasting insulin test to go with your fasting glucose, and then use an online HOMA calculator to get you HOMA score, otherwise, your blood sugars might be fighting your treatment without you knowing it.
The formula for HOMA= Fasting insulin X Fasting glucose (in mmol/L), divided by 22.5
(convert you fasting glucose to mmol/l before beginning the formula)
It’s all pretty complictated but you can go to Cowriter’s Journal in here for a good primer on the whole topic. Basically, if you are at all Insulin resistant, then you will make too much insulin to try to correct that.
It’s technical stuff, but, Interferon is a CYP450 1A2 INHIBITOR....a WEAK inhibitor. And insulin is a CYP450 1A2 INDUCER. So basically, hyperinsulinemia (too much insulin) makes interferon much less effective and THIS then accounts for the higher rates of slow response amongst those with this problem, and you don’t have to be overweight for this to be true, though many are.
Regarding what most docs still think and concerning their data on non-responders. I think they're calling some people "non-responders" when in reality they were slow responders. ... Or who may not even be sure whether they were slow responders or non-responders.
Years ago, viral loads were checked at baseline and week 24 on genotype 2 and 3.... and baseline, week 24 and EOT on genotype 1. And the viral load test we used couldn't measure below 600.
(at week 12 I was still at 500,000…but I pressed in armed with some knowledge, and I’ve been UND for 68 weeks now, so there is some hope here.)
Nowadays many are being penalized because their odds may only be 50%, or 30 or whatever…or their treatment may take longer or cost more, but notice the odds were no worse, they did NOT go to 1% as previously..those odds are calculated on 48wks only. Important to remember that distinction!
The real issue should be can your mind and body tolerate the treatment if there is a chance you may clear the virus. The reason is, with proper precautions people can live 5-20 more years even with stage 4 liver disease. The key however is to slow the progression of the disease to help that happen, and that probably won’t happen if the virus stays in there.
Since liver transplants are getting harder to come by, and often end in complications or rejection if even available, it made more sense to me to try a kick viral butt but that of course is a personal choice you must make with your own soul, and family, and doctors help.
I hope the best for you. Don’t forget, PRINT your studies and go armed with the research supporting your requests.
Wow - I thought I was an armchair Dr but you are eeeeeeemazing!!! Thank you so much. I feel so foolish - as if I had my head in the sand about this whole thing - well actually I did. It is my fault as back in 2002 I had my first biopsy and consult re treatment. At that time I was getting ready to move back home to Seattle from Mississippi. The NP at the gastro office there told me at stage 3 fibro/borderline cirr that studies show weight could be an issue. I should take 3-6 mos to lose the 40 lbs i needed to lose and then start tx to give myself every chance. Well 5 years later and another 60 lbs heavier (i have been on methadone clinic for 10 yrs now - seems all gain weight although really no excuse) I was getting ready to go back for another local consult when a friend of mine got on tx. Oh my god she was suicidal everything was horrible she wanted to jump out windows, she was hysterical the whole 9 yards - of course that kept me firmly rooted to my couch and scared to death that I could not deal with that. So she finishes her year (successfully) and lo and behold life is still sucky and she is still suicidal and can't deal with anything...I never realized i guess that she was ALWAYS that way even before starting tx. So then i finally go and find out that my time of fear and denial has given my virus just enough time to really f*** with my liver so I am forced to start tx. I feel SOOO lucky because besides a few tears of depression and aches and pains I have not had it bad at all - in fact I think i was like "is this it???" How lucky is that? More problems have come from diminishing numbers like sores in the corner of my mouth, etc. Anyway. that is the rest of my history in case anyone gives a hoot. I say all of that to say that I am shocked that I have not taken every opportunity thus far to research, and become an expert on my disease! It has never been my style to bury my head in the sand so i wonder why i did on this issue? Regardless I cannot change my past choices but the amazing rally of support, and people taking time out of their day to "lift me up" is touching to say the least. I will keep you all informed and hope to be able to "pay the favor forward" so to speak for another person in my situation! Sometimes that simple little prayer that I used to hate is just so appropriate....."God grant me the serenity..."
"Not really so worried about the procrit because as I said those numbers were on the rise. "
Well...your NP gave you a significant riba dosage reduction from 1200mg to 800mg with the numbers you had, which were 10.6. I consider that to be an over-reaction. If you're tolerating well, I don't see the need to dose reduce at 10.6 hgb. Even on my trial and trials are more conservative, no dosage reduction of ribavirin was required until I dropped below 10.0. Since you're seeing your GI on Monday, ask at what levels he'll force a dosage reduction and the procrit would be to PREVENT your hgb from getting below that. You might want to put some thought into what you want to say to the GI - let him know you're tolerating side effects very well, etc. and if it's a choice between dosage reductions or procrit, you want procrit. Assuming that's what you want, that is.
That is absolutely what i want - i want to do whatever i have to so that they will allow me to continue with tx. I have been approved by insurance for both procrit and neupa. Will take neupa today as i understand fairly fast acting. will have blood drawn before appt on mon then they will have results by tues if gi has any hesitation. I sadly had to make the decision not to take my shot of interferon because i decided if it takes me a while to get my referall to hepatologist through then i believe my np would not refill my meds because i went against med advice. One time she only THOUGHT i had missed a blood draw (which i had not) and they denied my refill of interferon. Of course i called them and said no i did not miss blood draw look in chart and they found it but just the fact that she was willing to do it so quickly gives me pause. I am tolerating side effects really well other than out of breath and tired a few tears here and there some itching sores in corner of my mouth...piece of cake!!! Thanks tracy
" Will take neupa today as i understand fairly fast acting. will have blood drawn before appt on mon then they will have results by tues if gi has any hesitation. "
Sounds like a plan.
"I sadly had to make the decision not to take my shot of interferon because i decided if it takes me a while to get my referall to hepatologist through then i believe my np would not refill my meds because i went against med advice. "
Tough decisions, eh? If it makes you feel any better, I had interferon reductions for 7 out of 9 weeks in a row starting at around Week 25 and it damn near killed me to comply but I was on a trial and to not comply would be to basically kick myself off the trial. It did work out in the end, I'm SVR now. But it was really tough to decide at the time. Had varied opinions including those who told me to get off the trial, etc. and in the end you sift through it all and do the best you can for yourself and hope it works.
"I sadly had to make the decision not to take my shot of interferon because i decided if it takes me a while to get my referall to hepatologist through then i believe my np would not refill my meds because i went against med advice. "
Week 12, not UND and no IFN for a few weeks? Well if you are off the interferon now I'm not sure why I'd continue taking the ribavirin. A few weeks off IFN and the course of action will be to start you all over at zero. The riba won't do anything to get rid of the virus and most likely your viral load is going to go up pretty quickly. Week 12 not UND and no meds to get you down is not going to get you any better response.
Hopefully you can get a new doctor and better care and attack this disease more aggressively without any dose reductions next time. Keep learning all that you can so that next time....WITH a better doctor (not NP doctor!!!) you can beat this thing down fast.
By the way even WITH the epogen my hemo never really went up passed 10.5 throughout my whole treatment and I tolerated it just fine eventually you DO get sort of used to running with less oxygen. It's pretty common to be about there...so this over reaction by this nurse really cost you a lot. Dont let them do that again to you.
I agree with the comments that you have to see a competent liver specialist (hepatologist) right away. Not sure if her supervising GI is that person. In fact, I have doubts because if she's that they bad, how good camera supervisor be? As stated, unless there's something going on that we don't know about there is no reason to reduce or stop the Peg based on your current ANC values. Any delay at this point could kill remaining chances you have of SVR. "Trish's" example above, is not apples and apples. She was not on SOC -- she had a third trial drug -- and I don't believe she was a slow responder. She certainly didn't have cirrhosis and she wasn't obsese. point being that the fact her dose reduction didn't hurt her SVR really has little to do with your case.
All that said, the one point your nurse brings up that does deserve consideration and that is what are your real chances of SVR and does it make sense to continue on treating for you better stopping at some point, and retreating with the newer drugs, perhaps after losing some weight and treating any other issues such as insulin resistance or fatty liver should you have them. Because right now, you have three negative predictors of SVR -- cirhossis, being obese, and being detecitble at week 12. And if you don't take your next Peg injection, it gets worse.
The best scenario IMO would be for you to continue on full course meds until you see a competent hepatoloigst who can then sit down with you and discuss what's in your best interest moving forward. It may indeed be the stop, but cross that bridge when you get there. But as JP suggests, these are powerful drugs and must be taken under medical supervision. Perhaps more persistence in reaching your Dr. may be in order for permission to take the injection. I know some here would say take it anyway -- and personally I probably would -- but the risks have already been pointed out.
Jim – Typically great response. What I don't understand about Tracy's account of what her nurse said to her is that it is simply wrong as far as I know:
". . . she told me that they now know that anyone who is NOT Virus non-detectable at 12 weeks has only a 1% chance of svr post meds which means 99% chance of virus return."
I don't understand where this is coming from. I just posted a study of 48 vs. 72 week treatments a few days ago. If you are genotype 1, have a two-log drop at week 12 and don't clear until week 24, you are a slow responder and your chances of SVR drop to around 35% with 48 weeks of treatment. Those aren't great odds, but they sure aren't 1%. I understand that the cirrhosis, obesity, and other issues, drop the chances further, but what the nurse is reported as saying is simply not true. (Unless there are new studies that I haven't kept up with.)
No it's just patently not true in any way shape or form.
Too bad Nurse Ratchet doesn't read studies or obviously anything new on HCV.
( I know you were talking to Jim but as a person who was not UND at week 12 but SVR for over two years the concept is something that gets my goat more than a little bit, if I had listened to bad information like that and not done my own homework in here I would have failed for CERTAIN).
Tracy, I have been on reduced interferon for 5 months of 7 but I'm kind of a weird case because I cleared very early and am super-responsive to the anti-virals. I don't believe the reduced dose has done me any harm. Reduced riba is more of a problem. It's like the lighter fluid that gooses the interferon response along. Since you haven't cleared yet, any unneccesary dose reduction is a problem.
I was interested in Nurse Ratchet's comment that cirrhosis is irreversible. That has been found to be untrue. Even some national sites that don't get updated very often still say that it's not reversible but studies done by Schering Plough, the original releaser and manufacturer of interferon, have shown that it's not uncommon for cirrhotics who successfully clear the virus from their systems to regress their fibrosis as much as 2 entire stages. Of course everyone responds individually and some patients don't alter their fibrosis stage, but more do than don't. Nurse Ratchet is not up on the latest research.
Your nurse, if she has your best interest at heart, would at least arrange a conference call with you, herself and the doctor TODAY, so you can find out if she's plain wrong or not. She'd call it him at home if necessary.
I have a too-long story to tell about my older son's birth. In a nutshell, the doctor was beside herself when the nurse mistakenly ordered my son under the bilirubin lights while the doc was away over the weekend. The consequences were dreadful and the doc just about booted the nurse to h-ell for her incompetence. And the nurse had just got the numbers mixed up.
You're being ordered by your nurse to STOP your interferon ENTIRELY, are not UND and yet have the rescue drugs in your hot little hand with lab numbers that are very far from alarming.
Your situation is not comparable with Trish's or NewLeaf's.
I believe Trish was already UND when dose reduced AND she was ONLY dose-reduced, not stopped entirely (at least until week 34). And her profile was very different, early stage, etc.
Newleaf has stage four like you but was an extremely early responder and cleared the virus (within two weeks, Newleaf?). I know she dose-reduced the interferon but I believe she never stopped it entirely.
I simply don't fathom this nurse of yours. She strikes me as archaic or out of her depth, unless there's something she knows that we don't.
My NP may look archaic but she was cutting edge from the get-go. She said with great gravity, staring me in the eyes, "Now all we want you to do is comply with your meds and if we run into trouble, we'll give you rescue drugs to get through." I never needed rescue drugs because she also had the brains and experience to let me surf pretty low, especially with ANC's.
Without a competent, caring and knowledgeable NP and up-to-date doctor, you can find yourself in the middle of a nightmare every step of the way, instead of relatively smooth sailing.
I have to run but I wish you the very best. Your nurse seems to be running interference on you and you'll need to huddle first, in order to stay in the game.
I cleared in a week, which makes my situation NOT applicable to anyone else's. I would be extremely uncomfortable about anyone being dose-reduced on peg or riba who had not already cleared the virus.
I can get away with it because of my odd situation but I believe those who have not cleared are endangering their chances. Even with reduced peg, my virologist was adamant that my riba stay at full dose, since that is the drug, if reduced, that has the most influence on failure to maintain an SVR.
"She certainly didn't have cirrhosis and she wasn't obsese. point being that the fact her dose reduction didn't hurt her SVR really has little to do with your case. "
Before anybody gets too far off in left field thinking that I was suggesting that Tracy doesn't have to worry about a dosage reduction because I had one and SVR'd....my POINT was more to the fact that even though treatment choices have to be made, it ain't over til it's over and it can still work out.
I wasn't suggesting her case was anything at all like mine or that we're in the same boat, OTHER than having to make tough treatment choices and hoping for the best regardless and sometimes it still works out, even when you get pulled from treatment at 34 weeks. That's it, that's all.
Simply a statement to keep the faith and don't let it get you down and hang in there.
Without reading through the whole thread here, I think it’s important to point out that cirrhosis is reversible to a point; as long as the patient remains compensated (CTP class 1). When evidence of decompensation is present, I believe the patient will require a transplant at some point; this also marks the distinction of ESLD. This might have been noted above; I skimmed the thread, and didn’t notice it, though.
Tracy, it looks like you’re on top of things, and getting excellent advice here. Welcome to the discussion group; glad you found your way here. Take care, and good luck to you--
I am humbled by all of you - thank you so much more than a few of you need a np or md behind your name. Here is my plan - best i could come up with:
1. I have increased my riba up to 1000 (know i need at least 1200 but will have procrit on monday) even though she told me to go to 800
2. Have an appt with md (who I have NEVER seen) as i said when i started this treatment i never saw a dr - only the np.
3. Taking first neupa shot tonight friday
4. Have only skipped 1 shot of interferon (i know that is less than ideal) but with a cbc draw first thing monday am and an appt monday pm then he should get prelim cbc results by tuesday am in time for him to hopefully feel comfortable letting me take my shot on my normal day (tuesday) which will keep it at only 1 missed dose. I know a lot of you advocated for me to do the shot anyway but besides not wanting to get in a situation where they tell me i was irresponsible for doing that against medical advice and because of that they would not refill - I had this thing in the back of my head that what if it did tank me and all i got was a big fat i told you so ha ha. Mostly the first reason though.
5. Will have referral done to uw requested on an emergency basis (talked to guy at uw and he said he would try to rush through) so hopefully i will be delivered into the hands of a good hepatologist within 2 weeks.
You all have armed me to the teeth - i am not a shrinking violet and usually have no problem pushing my cause with dr that I am paying - i think her combative nature and defeatist tone caught me by surprise. Because i was not armed with all the information you all have given me i was forced to comply but it will NOT happen again.
Maybe it is that woman thing of taking care of everyone else first as I have gone through similar stuff with my mom and ABSOLUTELY knew that I had to be almost more knowledgeable than the docs and was - that way i knew i could force them to give her the best care. Why I have not become knowledgeable yet on myself is a mystery to me but in the process of being remedied.
Thanks again to you all. Especially info on insulin resistance. I did have a fasting sugar done a while back which was normal - i had had problems with low blood sugar mostly related to not eating very much so that would be hypoglycemic but that has been addressed with my diet. I will look into the insulin resistance information thanks.
Do you have your list of questions ready for the doc on Monday? Is he a GI at least? You called him an MD. Your interim time while you wait to get in to a hepatologist is vitally important so I'd suggest you fight hard for full resumption of interferon AND ribavirin. Neither of your numbers suggest a reduction at all and particularly with Stage 4/4, the line you want to get close to is pushing for treatment success as hard as possible and that means full dose for as long as possible. If that means extra blood tests to monitor more closely then do that but reducing treatment drugs should only be done at this stage if it's clear that there is trouble. I went through most of my treatment from 15 weeks on having weekly blood tests because my numbers were always so close to the line.
I'd rather see you do at least 1/2 or 3/4 of your interferon because it will make the ribavirin effective but I understand the hesitation. If you're afraid she's going to pull your drugs completely, that's a tough call. Interferon lasts 7 days in the body and that's why the shots are 7 days apart. Right now your ribavirin is working on it's own so it's of limited effectiveness without the interferon. Whenever you resume your interferon, your next shot should be no more than 7 days after that.
As for your viral load being 99 at 12 weeks, think about this. By the time you got those results, you could already have been at 0. The same day in fact. And that would have been a good result. So you are really close to that and there is good reason to keep fighting.
At some point, you might also want to start looking into going 72 weeks instead of 48. However, get through this current challenge you've got and get your meds restored, see how your next sets of CBC's turn out, get in to your hepatologist for a 2nd opinion and hang in there.
Thanks for checking back in with me. I really believe that had i been able to take my shot last 5 days ago that my vl would have been 0 - we shall see. How often did you have your blood drawn after 15 weeks? You did not say that in your post.
The doc is a gi and that was the best i could do. I did not know there was such a thing as a hepatologist so when i started all of this i just called a gi office. So I will report back monday evening - if i can get him to greenlight me then i can do my shot monday and that would be a 51/2 day hold instead of 7...
I agree with Portann that your initial Riba dose may have been too low based on your weight. Using Procrit could have allowed you to use a higher dose. I also agree with merryBe about the insulin resistance, especially since you were having hypoglycemia which could mean that you're producing too much insulin.
And I specially agree with Jenny Penney that you shouldn't do anything without having a doctor who can take care of any problems. The neutrophils (which are white cells that defend you against BACTERIAL infections) may be at an acceptable level to continue treatment but you don't know if your LYMPHOCYTES are normal. Lymphocytes are white cells that defend you against VIRAL infections. And on one of your earlier posts you said....
"i told her I thought I might have shingles on my lower back/upper rear. She said well I don't really see herpes so i might not know the best med and really uppity said "i mean i could look at the sore on your butt if you want me to but I dont see herpes very often"
Herpes/shingles is a VIRAL infection....so she should have been looking at your lymphocytes, not just the neutrophils.
Treatment for shingles should be started as soon as possible (preferably within the first 72 hours) or you may end up having nerve pain after the shingles are gone. Your NP should have known that. Her knowledge of Hep C is obviously lacking....having other active infections like herpes, CMV or Epstein Barr can lower SVR. Hepatologists recommend that people who have herpes take an antiviral like Viraway or Acyclovir to keep the herpes suppressed during Hep C treatment.
I can't believe she doesn't know what shingles looks like....or that she let somebody leave her office with untreated shingles knowing how painful they can be.
I hope things go much better for you in the future.
Yes if you read my original posts actually all my posts - she ordered me to HOLD my interferon until my white count iimproved. I did my neupogen shot last night and call me crazy but i swear the sores in the corners of my mouth literally healed overnight! Crazy! Tracy
thanks so much for your thoughts with regard to the shingles i knew she would want me to see my gp or fam doc but because i was already IN HER OFFICE she could save me some time and money by looking oh well i am movin on up come Monday! Have a great weekend.Tracy
you are getting good advice here. 1st thing i don't like is that you never mention the Dr.i won't go back to a Dr. that has me seeing a NP. the only time i saw mine was well into tx and i knew the routine was not changing, i was clear of the virus and because my Dr. was out of town. looking back i would have skipped that appt. but getting back to your case: i wouldn't consider dose reduction. go to a hepatologist. he should get you connected with a hemotologist(blood specialist). i don't know what your chances are at SVR,but, if you can get a Dr. to approve 72 weeks of tx. they are a lot better. BTW- i relapsed the 1st time because i still had a viral load at 12 weeks. i even knew better but the Dr. (gastro) wouldn't go for 72 weeks. the second time i went to a hepatologist. started # 2 tx 5 mos.after the 1st tx and cleared at 5 weeks. i just finished and my 7 weeks post revealed that i am still clear. good luck to you! hang tough.
Hey everyone - I was searching for the Berg study that someone referred me to and came accross this - it is from the Hepatitis Association from April 2009 - fairly recent and I think the number that they quote is 98%. I have included the URL and the paragraph where i got the stat from - any thoughts on this?
Stopping Treatment in Likely Nonresponders
The absence of an early virologic response [EVR] at week 12, defined as undetectable HCV RNA ( 2-log decrease in HCV RNA at week 12 who have not become HCV RNA negative by week 24. Recent studies show that this information can be used to individualize the duration of therapy.
The HCV RNA status at week 4 also provides useful prognostic information that can be used to individualize the duration of therapy in genotype 1 patients (4,5). Normalization of ALT on treatment is an indicator of a therapeutic response but lacks specificity, and, thus cannot be used in place of serum HCV RNA determinations.
Thanks for your input - I read the info on the Url that you posted and it said that EVR defined as undetectable or greater than 100-fold decline in HCV RNA by week 12 have a 70% chance of svr whereas those who do not have less than 3%. With my numbers going from 700,000 down to 3,000 and then down to 99 by week 12 my reduction was a 100 fold right?
"The absence of an early virologic response [EVR] at week 12, defined as undetectable HCV RNA ( 2-log decrease in HCV RNA at week 12 who have not become HCV RNA negative by week 24."
You started with a viral load of 700,000. A 2 log drop means you remove the last two zeros.....a decrease down to 7,000 at week 12 would be a two log drop. And your results were 99 so you got more than a 2 log drop.
Thanks for your input but the specific url that antman posted discussed who could be called an evr - his contention was that i was not an early responder (the EVR was actually a 4 week number in this study) I was telling him that i thought i was an evr based on the 100 fold decline. did you read the url he posted? It would be cool if you did that way i would know if i am reading correctly.
I have another question - everyone is telling me that i need to fight fight fight for longer tx but then here is this study from just a week ago???
Extended Treatment Duration in Chronic Hepatitis C Genotype 1-Infected Slow Responders: Final Results of the SUCCESS Study(2)
The primary objective of the SUCCESS study was to evaluate the effect of extending treatment duration to 72 weeks with PEGINTRON and REBETOL(R) (ribavirin, USP) combination therapy in genotype 1-infected patients who have slow response to therapy, defined as having detectable virus (HCV RNA) with at least a 2 log10 reduction in viral load at treatment week 12 and undetectable virus at treatment week 24. In this large, prospective, randomized, multinational clinical trial, slow responders were randomized at treatment week 36 to receive PEGINTRON combination therapy for a total of 48 weeks (n=86) (standard approved duration) or 72 weeks (n=73). Patients with undetectable virus at week 12 (complete early virologic response), received treatment for 48 weeks (n=816), whereas patients who did not respond to treatment (less than a 2 log10 reduction in viral load at week 12) were discontinued from the study. In total, 1,419 patients were treated.
In this study, sustained virologic response (SVR)(3) with 72-week treatment was not statistically superior to the 48-week treatment in slow responders (47.9 percent (35/73) vs. 43.0 percent (37/86), respectively), the primary endpoint of the study. Relapse rates between these two arms also were not significantly different (32.7 percent (16/49) vs. 47.1 percent (32/68), respectively) and adverse events were similar among treatment groups (secondary endpoints). Early discontinuation rates were higher in the 72-week arm compared to the 48-week arm (23.3 percent (17/73) vs. 9.3 percent (8/86), respectively).
You did have a very significant response to the medications. It's true that you didn't become undetectable by week 12, but you came quite close. Although there are no guarantees, you are on a likely path to clear the virus before week 24. Thus your chances of beating the virus are significant – not great but substantial.
The article you cite concerns 48 vs 72 week treatment regimens. I think most people on this board are advocating that you fight to maintain your treatment dosages and maintain 48 weeks of uninterrupted treatment. The question of whether you would continue past 48 weeks is a separate question, and one that only your treating physician could answer. According to the article you mentioned, there are a higher drop out rate for those treating for 72 weeks, which makes sense, since it doesn't necessarily get much easier.
Hey everyone - i tried to post this earlier and got a message that the site was being updated so - my limited typing skills will have to give it another go!!.
Wanted to give an update after seeing doc - who i liked very much (he was a gi) he spent the 1st 10 minutes completely silent reading everything in my chart which i found encouraging - did not just try to breeze through, glance and ask questions - Told him issues with np - he understood - told him upset about being so conservative about stopping treatment - at 4/4 don't have time to be conservative.
The first thing out of his mouth was "well you are not a cut an dry case - we will have to tailor our treatment plan" - my husband and i both just took a big sigh of relief and almost gave him a big kiss right then ha. Anyway another thing he said was that even though i am not a super early responder i am definately responding and that is encouraging. Also - when he found out that my last biopsy in 2002 was stage 3 fibrosis/borderline cirr. He said well we know that your virus is a busy one and even if we cannot get SVR we should have a goal of und for as long as possible - even if we have to do a maintenance dose of intf/riba for even up to 3 years until something else comes along...
That was the first i had heard about a maintenance dose and I rather liked that idea if i did not have chance for a cure this time around. With regard to restarting the meds - i had my cbc and he told me to call np tomorrow for results (i will still have to deal w/her but he will be involved too). He said there is some debate starting about staying on rescue drugs all during tx - something about people developing blodd clot disorders...he did not really give me anything more concrete about that and said the numbers would determine his decision.
Because my body is having a hard time he wants me to stay on 800 riba and depending on white count tomorrow I can take either my full dose of interferon and if they are bad then i will take 3/4 of my dose.
In addition he have me a referral to a hepatologist - and agreed that would be a great idea.
So thank you all for arming me with info AND ammo!!! Truthfully after he talked about tailoring my tx i knew i would really not need either of those things. He was nice. I am still disappointed somewhat about reduced dosages but will deal w/that with a hepa and if my numbers come up from procrit and neupa then i will definatley lobby the gi to go back up.
Thanks again to all of you - i was concerned to read the study that was just released like last month showing that there was NO STATISTICALLY significant difference between the 48 and 72 week tx patients?? It seems as though everyone is advocating long-term but the stdies are showing otherwise??? I posted the URL a few posts back.
first of all let me say how relieved I am you were able to "reason with your DOCtor...as we had spoken privately of doing. First line of defense is always to get to the DOC not the GNP...it's faster than waiting for a liver guy, and in this case bore some good results.
secondly I would RUN don't walk from that GNP, the fact that she wouldn't even look, when half the treaters get riba rashes, or even refer you to an ASAP immunologist or other specialist is malpractice if shingles are suspected.
third, if you have shingles you really need close monitoring. In fact the usual treatment for that is very hard on the liver so you would really want a hepatologist involved then, and it might be wisdom to consider treating the shingles, and postponing any further HCV treatment until you've won that battle. It would depend on what they put you on and how you tolerated it, but it get tricky treating an ill liver for too many conditions. This is what can drive a real shutdown and it is a concern.
Assuming you don't have shingle let's look at that study that concerns you:
In this study, sustained virologic response (SVR)(3) with 72-week treatment was not statistically superior to the 48-week treatment in slow responders (47.9 percent (35/73) vs. 43.0 percent (37/86), respectively), the primary endpoint of the study. Relapse rates between these two arms also were not significantly different (32.7 percent (16/49) vs. 47.1 percent (32/68), respectively) and adverse events were similar among treatment groups (secondary endpoints). Early discontinuation rates were higher in the 72-week arm compared to the 48-week arm (23.3 percent (17/73) vs. 9.3 percent (8/86), respectively).
What I noticed there was that there was only a 4% drop in SVR treating out, but 2 sentence later they mention 23% dicontinuation. Question is, did they factor that discontinuation into their outcomes, because if not, then the 4% loss would be a 19% gain if it were factored in.
It gets better:
next they deal with type 2 and 3 and here they conclude with shorter treatments, (and hence no dropouts mentioned that
>>>>>>>>>>Relapse rates were lower with 24 weeks compared to 16 weeks of therapy (17.8 percent (29/163) and 16.3 percent (27/166) vs. 29.3 percent (49/167), respectively). Adverse events were similar, regardless of treatment duration or PEGINTRON dose.
ok, so here they say that there is a 12% LESS relape when treating 8 extra weeks.
see the contradiction here? This is what makes me question their type 1a stats.
That and other studies have also confirmed that the time one treats after going UND does effect outcome. Obviously everyone can't be telling the truth. The more studies I read the more I realize how easily the numbers can be made to tell truth or lies.
It is in ShP' interest to sell more INF, so I'm not thinking they would deliberately try to stop entended treatment, quite the opposite actually, but I have seen some pretty strange mistakes in the math and dosing departments, so nothing would surprise me.
Anyway, that first set of numbers definitely don't jive at all with the second set.
And while it is true 1a is harder to treat and that could account for the disparity there it's also a good question to ask, did they figure the dropout rate into their outcomes. Without knowing the answer to that one wonders are our odds the same or less, or are they better with ex. treatment.
Might be a good idea for us to write the researchers and ask!
p, glad also you got on the procrit/neupo. The only thing I read as far a long term is that it can stress out the marrow for a few...which means only take the higher dose if the lower doses aren't helping you. They started me at 40,000 procrit and went to 60,000 when that wasn't helping, but said any more would do no good and could do harm...it's important to test for available transferrin(iron) and make sure you have some for the procrit to work.
Read a few iron threads in here so you'll know what to do and not do.
and keep on trucking!
Thank you as always for your thoughtful and obviously time consuming response to my questionsl - I am not worthy! ha ha. Tracy - curious - have you heard of people on "maintenance" doses for up to 3 years?
I've heard of the maintenance dosage treatment. It is not widely practiced and has not shown to provide marked improvement in liver histology.
Don't understand why you would consider maintenance dosage but not extension. Tracy you a stage 4. I'm a late stage 3 and giving it everything I have this go round. Statistically, you chances of SVR are increased when you extend. Given your history, like me, what other choice do we have? I can't recall anyone on this board with the degree of liver damage you and I have and the fact they were late responders that SVR'd after 48 wks of treatment. No one! I don't want to do this again and I will not consider Infergen as a backup. If I don't SVR after 72 wks I'm done. That's it for me until the PI's come out.
Talk with the hepatologist and see what he recommends. I think the maintenance thing is a very questionable. 3 years is way too much exposure to interferon even a reduced dosages. These drugs are toxic and the less exposure, the better off you are.
thanks for your input - did not say that i would not consider extension - would do it in a heartbeat - things are constantly changing i know - and i read the study that showed no "statistically significant" success rates in patients who went 48 or 72 - so of course that made me curious about maintenance dose as i had never heard of that. My dr's reasoning was - that since my virus is so active going from stage 3 fibrosis to complete 4/4 in 5.5 years that ifwe could somehow keep the virus gone as long as possible (maybe until new meds come out) that just by the fact that the dsease was not active then i would have a better chance of maintining what healthy liver i have left.
I am definately on the trail of a hepatologist AS WE SPEAK.
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