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919881 tn?1243660771

Continue treatment or not???

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.

Tracy Hopkins
89 Responses
Avatar universal
Tracy,

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.  

Grrr, I don't like your NP.....she's a fool!!!

Good Luck, I'm sure others will chime in.  

Trinity


919881 tn?1243660771
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.
919881 tn?1243660771
See a hepatologist instead of gastroenterologist?
Avatar universal
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.

Trish
Avatar universal
I just read your recent posts.  How far are you into your ribavirin dosage reduction?

919881 tn?1243660771
1 week dose reduction and 24 hours past when my interferon shot was due
Avatar universal
Tracy,

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.  
Avatar universal
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.

-- Jim
Avatar universal
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
919881 tn?1243660771
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
919881 tn?1243660771
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.
Avatar universal
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.


179856 tn?1333550962
Tracy

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.

179856 tn?1333550962
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.

deb
Avatar universal
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.
Avatar universal
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.
919881 tn?1243660771
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!








Avatar universal
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.

Good luck!
179856 tn?1333550962
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!  :)
Avatar universal
Does this doc have drees up in a duck suit??...QUACKy QUACK
919881 tn?1243660771
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.
Avatar universal
I would do the shot and resume my original dose of Riba while I looked for a new doc.  I would not discontinue meds on the word of the NP.  Good luck.  Let us know what you decide.  
Avatar universal
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.




  
179856 tn?1333550962
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!

debby
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