I was on procrit for many many months at 40,000 units a week. Hepo wrote me a RX and i did the shots weekly at home. Never had any sx effects from it. Lets hope you don't have to reduce your meds......Wishing you the very best
I was taking Procrit for 36 weeks on my first round and then I took it for 70 weeks on the second round. I never did a dose reduction. My HGB hovered between 10 and 11 with procrit.
Thank you for getting back to me. I was sure I had read that before.
She seems pretty firm on not relying on Procrit alone. She say's that she is comfortable dropping it to 800 because I was UND at 4wks and 12 wks. I am nervous about dropping the dose because I really don't want to do this again.
I would not reduce your riba at this point. I would also hang in there on the procrit at the moment as in hold off. 11.2 is not really procrit range just yet.
I wouldn't rely on procrit alone either, but ONLY if procrit is not doing the job, your hgb is still low and the fatigue is hitting you hard mentally and physically and you are out of strategies to deal with your fatigue - that is a very individual thing. What one person can handle at low 10's is different than another and the goal is adherence and to get through treatment = essentially to run your own race, which you will understand. You may be one of those people who have to drastically reduce your physical activities and switch your quality of life over to other activities that are non physical. That may be hard for you when your QOL *is* the physical activities however treatment is one year out of a life and as you said, you never want to have to do this again. You have the coveted RVR under your belt so I encourage you to take whatever alternate steps you need to take to deal with your fatigue issues and suck it up for the remainder of your treatment. THEN your first runs will be sweet and it will all come back to you. You will lose the weight again and you WILL be able to run again.
I WOULD rely on procrit as first line of defense BEFORE doing a ribavirin reduction. From the research I've done and the questions I've asked of Dr. Dieterich, always preferable to use a rescue drug over reducing treatment drugs when there is no physical risk to continuing with the treatment drug.
What week of treatment are you in now?
Good luck, CMcH.
Thank you for your kind and thoughtful post. I am willing to tolerate the sides and I do not want a reduction. I have been OK'd for SDI but cont. to work to keep mentally and physically active.
It is my doc that does not want me to keep relying on Procrit. They don't give it until <11 and mine is up now from the extra shots. I have felt better this last week and even went for a "jog" for the first time in 2 1/2 months.
She said that she would rather reduce than give me weekly Procrit shots.?
That because of my RVR she is comfortable with that but I am not.
She said that she wanted my bone marrow to make the RBC.
I was wondering, if you rely on artificial means to keep up your HGB does that perhaps cause your natural systems to back down?
I will cont. to insist on keeping up the meds. I do like her and she is at the same hospital I work at so it makes it convenient. She is GI but only handles HCV at a very busy County Hospital. She goes to all the conferences and is quite knowledgeable.
If anyone has some info I can present to her I would appreciate it.
I am on week 18 or 48 so not even 1/2 way!
I just got in the door and I will send you some links regarding reducing ribavirin vs using rescue drugs.
I don't think you're far enough along yet to get complacent about the ribavirin. I think your gut is bang on. My first GI assured me he goes to all the conferences and is quite knowledgable yet wanted to treat me based on my viral load alone with no biopsy. It tends to make one very skeptical.
Hang in there, you seem to be doing okay this week and I hope your hgb hangs in there ... resist the riba reduction for now, would be my advice, you don't need it yet nor the procrit. In the meantime, buys you time to do your research. I'll get back to you on the bit I do have info on, not sure about your question regarding artificial means .. I think epogen stimulates your body's natural processes to get them producing by natural means but don't quote me on that...that's just my initial guess. Hopefully others will kick in and I'll be checking that hunch out as well. Good question.
Your medical team sounds inexperienced and my guess is that they are not liver specialists (hepatologists). Many here, like myself, took Procrit for much of treatment -- so to answer your question, -- no, there is no limit on how long you should take Procrit as long as you need it which in your case appears to be "yes", since the alternative is to reduce the riba. Reducing the riba can lower your chance of SVR. If you can't convince your medical team to continue with weekly Procrit, time to look for another team.
If you pull out your procrit insert, it explains what the medication does, what it's made from and how it works. It also goes into great detail on recommended dosages. If you have it, I would suggest reading it. If you don't have it, I'll try to find the link. I don't have any of my links handy at the moment but wanted to point you in the meantime to your package insert.
It states to start with 40,000 IU/ml injectons WEEKLY for cancer patients until one attains 12.0 and that hgb levels should not exceed 12.0. You're at 11.2.
Are they talking about giving you a ribavirin reduction NOW or instead of procrit IF your hgb drops? At what point does your doctor insist on reducing your ribavirin rather than re-introducing procrit? When your hgb drops below a certain level and if yes, what is that level? Or, when you call "uncle" and ask for intervention?
Regardless, the dispute is whether to reduce the riba or re-introduce procrit pro-actively and I would, hands down, go for the procrit when your physical health and hgb is at a level that does not cause health concerns but rather requires alternate maintenance strategies.
There are no concerns with maintenance dosing procrit as long as you're not consistently keeping yourself above 12.0 and continuing with procrit at the same time...and even that is a bit debatable on how it applies to persons with HCV as those guidelines are for persons on cancer treatment. We're not exactly the same.
The maintenance dosing section talks about titrating down the amount of procrit once the desired effect has been achieved, not discontinuing it. In my case, we discontinued it and now I'm back on it and we'll end up titrating it rather than turning it on and off, at least that's my hope. My story is still being written as is yours.
Again, good luck.
As I understand it, "12" is simply a recommended guidelines, probably conservative, and has to be adjusted for numerous variables including how the patient is handling a certain level of hgb at a certain point in treatment. Bottom line is that if the decision is between Procrit (epo)or riba dose reduction due to numbers/symptons, then Procrit should be administered based on what I've read and heard.
So again, in the real world, guidelines are simply guidelines and good liver specialist with treat the patient and not guidelines. And this isn't just deciding whether to
continue Procrit or not, but also when to initiate Procrit. Often you hear "My doc won't give me Procrit until my hgb reaches 10" or someone else posts the same but the number is now "11".
This by-the-number doctoring is bad doctoring in my opinion and probably inexperienced doctoring where a doctor will fall back on guidelines to compensate for lack of current knowledge, clinical experience or a combination of the two.
I ended up in the ER with hgb 11.8 and was given Procrit immediately. No guidelines here, but I was treated based on symptons and my hgb drop from pre-treatment baseline -- which I believe is also covered somewhere in one of the Procrit I once read.
Later in treatment, I would have functioned just fine at 11.8 but at week 2 the drop from baseline was more than I could handle. Without Procrit (epo) I would not have been able to treat the duration without reducing the riba.
If your doctors insist on treating by the numbers, then get the number of another doctor.
I guess, Jim, that's what I'm trying to avoid when it comes to my ANC, by-the-number doctoring. My ANC doesn't indicate neupogen but keeping me from INF reductions does, IMO. It's all relative, isn't it.
Anyway. I'm suggesting that the insert be read as there is some really good information there, even if it is "by the book". My prior comments would indicate agreement with your sentiment on that as I mention how it's impacting her specifically both physically and mentally.
Beyond that...I don't know enough about the specifics of CMcH's situation .. so asking for information and sounds like she'll need links to information that shows rescue drugs are preferable to dosage reductions.
Some reading, some articles, and I hope some of this helps you advocate for yourself. Incidentally, in the course of compiling this for you, I also found articles that will help me advocate for myself in fighting the interferon reductions I've been getting. :)
Note as you work your way through these that while adherence during the first 12 weeks is critical, the goal of maximum adherence in general is cited as important.
"What treatments are available to help me?
If anemia is caused by ribavirin and/or interferon, early studies show drugs that stimulate red blood cell production are effective in treating anemia in people with hepatitis C and allow more people to stay on their full dose of ribavirin.7-13 If anemia remains untreated, people often need to take a lower dose of ribavirin or discontinue the therapy altogether, which can affect how well their hepatitis C treatment works.4-6 Close communication with your doctor will help him or her provide the treatment that is best for you based on what is causing the anemia."
This one is one of my most used articles on this subject and talks about the importance of adherence to your drug therapy, the importance of keeping your dosage at 100% and not JUST after reaching UND or RVR , it mentions "particularly in the first 12 months" but not ONLY in the first 12 months.
An article on the importance of adherence to treatment in general:
This study clearly shows that the greater the adherence, the greater the chances of SVR for both INF and Ribavrin for genotype 1's in particular
The difference in SVR rates between those maintaining >80% adherence compared to those with <80% adherence.
Excerpt: "Adherence beyond 12–24 weeks will be advantageous only for those patients who have achieved such an early virologic response." This applies to those who have met the criteria for continuing treatment and suggests for those who are continuing treatment because of RVR or EVR, that adherence beyond 12 - 24 weeks (geno 2/3 and geno 1 respectively) is still important.
This one in particular details the dosages based on weight and the difference in SVR rates between a fixed dose of 800mg which your NP proposes to put you on vs a weight based dose which you were on at start of treatment - also goes into the importance of adherence and usage of procrit/erythropoeitin in "effectively" maintaining adherence...short reference to it but it IS there. I have found this following article very encompassing of many things and may cover alot of this ground all on it's own.
"INDIVIDUALISATION AND OPTIMISATION OF THE CURRENT STANDARD THERAPY Adherence to therapy
Adherence to therapy is one of the most important factors associated with the success of therapy.17 The definition of adherence used here is the 80/80/80 rule, as patients who received more than 80% of IFN, more than 80% of ribavirin, and were treated for more than 80% of the planned duration of treatment are considered adherent. One of the first studies investigating the effect of adherence demonstrated that patients who fulfilled the 80/80/80 rule had a 63% sustained response compared with 52% of those with less than 80% adherence.17 This was statistically significant for HCV genotype 1 patients. Therefore, it is important to reduce side effects and motivate patients to adhere to treatment in order to optimise treatment responses, especially in difficult to treat genotype 1 patients."
"Ribavirin side effects
The main side effect of ribavirin is haemolytic anaemia as this complication may frequently result in ribavirin dose reduction or even discontinuation, which may significantly affect the overall SVR, especially in patients with HCV genotype 1.16
Treatment with erythropoietin can effectively reverse ribavirin associated anaemia and allow full adherence to ribavirin therapy.56 This will improve response rates but the treatment is expensive and not reimbursed in many countries. " I daresay your country is not one of them and I hope your insurance covers procrit.
I could continue, but the 80/80/80 rule at minimum is well-established. These articles blow her theory out of the water, in my opinion, to say that she doesn't have to adhere beyond 12 weeks for a a 48 week treatment regimen. The most she can get away with is 9 weeks IF she wants to play Russian Roulette with this when the 80/80/80 is the bare minimum. And who wants their doc operating at bare minimum of adherence when you can get as close to maximum as possible? If she reduces after 12 weeks, that's 36 weeks at reduced ribavrin. You're also in the unique position of not having lost weight but increasing. Her saying she can reduce you after you're RVR and UND at 12 weeks is similar to the people who come on here asking if they can stop taking their drugs now or can cut back because they're UND at 12 weeks. They'd get a resounding "No!!!" from the chorus.
I concur with Jim that I think your doc is not so experienced with treating HCV and regardless of the conferences she's going to, I would suggest that you get a second opinion if you can get one. That's a rather firm statement on my part .. just the more I read the more I get concerned with her suggestion that it's okay to reduce your drugs after 12 weeks instead of giving you procrit to keep your adherence percentage as high as possible.
Once more, I'd encourage you to maintain your ribavirin dosage and advocate for procrit use....and add to that my support for Jim's suggestion to get a second opinion.
And once again...good luck in advocating for yourself and in your quest to understand what is best for you.
You are making an excellent case for making best efforts at 100% adherence by either convincing your med team or finding a team that does not need convincing. Hopefully, you -- er I mean CMcH -- will take action on it :)
Funny. I did see the irony in that much of that applied to my own current dilemma as well. That did not escape me .. just so you know. :)
I stayed on 80,000 a week epo every five days I'd do 40k for 69 weeks. I ran into trouble at week 3 and then needed it from there on in. I did NOT dose reduce and literally refused to do so - but my doc was pretty good about listening to what I believed I needed.
As soon as I was off treatment after my last shot I stopped.
If your doctor is really not going to help you out by letting you have weekly shots, can you go find a hemotologist who would have a better understanding of what procrit does and why you need it so that you don't have to dose reduce? Dose reduction is such a dangerous thing - especially in the first 12/24 (personally I would try like hell to not reduce until after 24 just because I am a freak and want ALL the odds in my favor.
Some GIs just don't have a full understanding of hemolytic anemia, dose reductions and the need for procrit on a regular basis - if you can work around that and find a hemo doc who treats many cancer type patients maybe you can just get it there and not tell the GI a damn thing!
I would certainly start working on that avenue just in case. In most cases the procrit doesnt really raise up your hemo level THAT greatly that she would even notice...you could just go on with treatment and regular riba like nothing at all happened.
That would be what I would definitely do. it's certainly worth a shot!
Hi, First I would like to say hang in there the road may get a little rougher if you can not get the hgb corrected and agree with Trish and Jim on the documentation presented and Trish’s last statement in that it may be in the best interest of you to possibly get another treating NP or doctor if when presenting the facts listed here are ignored because of ego which is probably what’s going to happen unless you have the tenacity as some : -) to be adamant in stressing your point about the riba reduction and the pro’s of the Procrit.
The two Procrit shots, I am sure you did start to a little feel better for a short time because the Procrit started to do is job, then it was stopped. Procrit takes anywhere from 0 to six weeks in some cases to kick in and am not sure why the NP is bouncing you up and down with it, which is not good for you. If she had any salts with her she would know that these meds hammer the hgb through out treatment. Some get hit hard at first and others may get hit anywhere in between but this is the first time I’ve heard the on again off again approach to regulating the floating hgb, does not make since to me.
I went from 15.9 to 11.2 in 4 weeks and there was no hesitation by the doc to start me on Procrit 40k once a week. I stayed on it through out treatment with an overall average of 12.6 except with a little modification at the end because of tapering off the meds.
I did reduce the Ribavirin at week 20 because of the side effects but was cautioned quite frequently here about doing so but had no choice, had to work. I was lucky in that I was und at weeks 8, 12, and 32 and remained that way up to today but I was also on 1200mg up to week 20 and lost 30lbs before reducing the riba. I personally do not feel that the reduction at week 18 is in the best interest of you because at that stage and being on 1000mg a day your system might not have been on it long enough to have an effective cmax time. It can take anywhere from 4 to 8 weeks to reach a steady maximum level in the system, jim or Trish can correct me if I’m wrong but is also up to the individual and the absorption factor of how well it is absorbed into the persons body.
I did work around the dilemma of the riba reduction outside the box at the end of treatment which has given me my piece of mind.
If they are stingy with the Procrit then take the riba reduction now and save the extra riba for later. You should know better than anybody else how you feel without the Procrit and what your blood work had look like in the first 6 weeks of treatment and what the 1000mg of riba has done to your system and body. If the 200mg reduction brings up your hgb and your next pcr still shows UND and subsequent pcr’s you’ll know the minimum 800mg riba has worked for you and if your really worried at say week 44 then reevaluate if it would be better to up the dose back to 1000mg going into the end of treatment and if side effects start to get more than you can handle back off. Read as much as you can between now and then as in this thread and others or find another doctor who is more liberal in the treatment area than the present NP?
I can't make blood adequately on my own and I've been on procrit (well, epogen, but its the same thing) for several years with no noted ill effect. On tx I used a whomping 40k units twice a week as have many others here, such as NYGirl and others whose names escape me at the moment. I am back to my old much smaller dose now, post treatment. There is a black box warning about not using it to get your hemaglobin up much above 12 due to risk of thrombosis, so I try to keep mine right about 12.5. I would actually consider switching doctors in order to stay on whatever helper drugs you need in order to keep your riba up. Just my opinion.
p.s. I was super proactive about my treatment. I had FOURTEEN blood transfusions on top of the procrit and didn't let them take my riba down at the beginning of treatment. If you are going to go through interferon, it just makes sense to me that you do the best you can to make certain the treatment is successful. And while your doctor can be cavalier about quality of life issues, you are risking enough "quality of life" with the interferon, much less if it doesn't work because of an early reduction in riba.
Thank you for getting back to me. It really does help me feel better about my gut decision to not reduce. I will cont. w/1000 Riba and just got a new script for a couple of months worth. If she is dead set against using Procrit to keep my levels up I will have to look around. As I have mentioned b4 I do like her and she has a lot of experience. It is also very convenient that she is at the hospital I work at. The Hepatologist at Stanford was booked last time I checked but I will look around.
Thank you for sharing your strength with me. I am usually a very stubborn redhead but these meds tend to take the fight out of me. When I finally got into the Dermatologist about this crazy rash I was in such a Hep C haze that I just sat there. I felt like I was watching a movie and not really participating in it. I barely remember what they said.
Hopefully the next time I see my NP I'll have the strength to stand up for myself
I'm not sure of the dosage, but I used Aranesp instead of procrit.It was less expensive than procrit for my insurance It was a bi weeky injection & I stretched it out to 3 weeks
From what I hear procrit is probably a better drug,but the Aranesp got me through 2 shots in 6 weeks held my hgh over 10 actually brought it up to 12 at one pt...also it onlly took 4 shots to get me through...48 weeks fwiw
I took the third shot when it fell below 10 it held pretty good...I wouldn't reduce the riba get as much in as you can also.hgh below 10 is no fun ...it's nice to have a choice good luck