Hi folks. Thought I would take a poll from the people who have had to deal with Anemia during treatment. Please tell me which of the options below you recommend, and why. How did you respond to the changes? For the record, I was instructed to dose reduce on Tuesday, I go back to see my doc on Monday. I know we are going to have a discussion about Blood Transfusions, but nothing is set in stone and I wanted to know your experiences. Everybody's body reacts differently, so I am trusting my doc to do what is best for me and my circumstances. Having your opinions means I don't walk in there 'cold', with no idea of possible outcomes. Many thanks!
Unfortunately "Other" isn't a real option... it's really too bad there are no other choices than dose reduction, procrit or transfusion for anemia on treatment... wish there were. My husband experienced all three while on treatment, and each has their benefits and drawbacks.
No one wants dose reduction, but in my husband's case, he was undetected, and his nurse assured us it was less of a risk than early in treatment. His hemoglobin dropped to 8 before Procrit got started, so he had to dose reduce a couple of times. He also had 2 transfusions in addition to all that because he was slow to respond to Procrit and even docs didn't want to dose reduce below 800 riba for him. Personally, I would have rather they transfused at 8 rather than dose reducing, but I wasn't calling the shots :).
Riba reduction and transfusion offer the immediate solution; both will generally raise your hemoglobin fairly quickly; but of course, both come with possible baggage -- you don't want to be off full dose Riba too long, nor do you want to spend treatment getting transfused every month. Theoretically either one, the riba reduction after undetected or a severe reaction to transfusion causing problems is unlikely, but definitely not a consolation if one of those "unlikely" scenarios ends up being your outcome.
Procrit offers the better long term solution so that you can stay on full dose treatment, but it also has risks, and has different levels of efficacy on different people (my husband had procrit 2x a week and dose reduced, and still couldn't keep hgb above 10). It's good to keep all the options open and discuss with your doctor what approach works best for you. Good luck! ~eureka
Bee your early in treatment and doing victrelis, while it says in the trials a "slight" dose reduction did not seem to hurt one's chances for SVR they also called a drop in 200mg slight, going from 1000 to 400 is not a slight reduction. Anemia is going to be a problem the rest of your treatment, i really hope their plan is not to keep reducing you to 400. You have had such a good response i wouldn't want to risk that. When i was on victrelis i had to be on 40,000 procrit twice a week.
When you say "so I am trusting my doc to do what is best for me and my circumstances."....... I agree up to a point, but he's not the one with Hep-C and at the end of the day for him dose reducing is easier. Being African American with and early und you have upped your odds greatly, don't give that back.
Bee.. couple of things ..You say in your journal that your last HGB. was at 9.1 and they reduced Riba at that time . What was your original Riba amt. and how much did they reduce it to and have you had any labs reflecting HGB. since?
can do has put it eloquently. If you have been reduced to 400mg, that is significant. Interferon has always been the drug that knocks out the virus initially, but it is the ribavirin that keeps it suppressed, and that suppression is critical.
Relying on the doctor's advice can be frustrating. We know how we feel. Like can do says, you will be anemic for the rest of your treatment. Procrit can keep that on keel without dose reductions. I have never seen, in the 6 years I have been on MH this amount of transfusions ordered by doctors. The doctors have let hondapatches HGB go to 6. This is unconscientable. Although a transfusion may do wonders, your HGB will go back down and in a month or so, from what I have read you will need another one. This cannot be good for your cardiovascular system - to allow your hemoglobin to bounce from 12 to 8 or 7 every month.
If your doctor will not rx it, I suggest turning to a hemotologist (Blood specialist)
I couldnt do this without the procrit. on 40,000 once a week probably for the rest of treatment. Week 25 for me. I have also gone down to 600mg from 1000 riba for a week or so somewhere between week 6 and 7 I would not want to have a transfusion unless it was critical. Sometimes the procrit doesnt work on everyone and reducing treatment or transfusion is the only way to stay on treatment . Sometimes I dont think the docs react quickly enough.
3rd week of treatment I was taken off riba because my hgb tanked at 8 and I figure it did that the very first week of treatment as I was flat on my back from exhaustion. I was off riba for two weeks and still was undetected on week 4. I am on procrit 3 times a week right now and still can't get hgb over 9.7 and it actually dropped to 9 last week, but I am feeling better as far as not melting into the couch and sleeping hours on end. Wish the nausea would go away now.
You have given me a lot to think about here. Thank you all so much for joining this poll.
EUREKA -- thanks for the details, that's what I was looking for so I could see some pros and cons
WORKING DOG -- okay, thank you :)
CAN-DO-MAN -- I agree with you and truly appreciate your honest kick in the pants; my guess is that the reduction is temporary and I will certainly mention that I want it increased again
BELLE -- Oh wow, that's great to hear that you are getting by on just the reduction! Thanks :)
WILLBB -- On Tuesday, reduced RIBA from 1000 to 400. Will most likely do labs again Monday or sometime in the next week to see where my HGB is now (9.1 was the last check)
PCDS -- thanks, I have been following your posts and praying you feel better
FRIJOLE -- I know hunh? I wondered about so many transfusions too. That was always something I figured they did if there was no other way, a last resort, but I am finding that not to be the case here
HIS3707 -- you voice my concerns exactly on the Procrit not working for everyone, or at least not to a dramatic degree
SCREAMING -- oh is that what happened? I didn't realize you tanked so soon. Thanks for the Procrit info. Try some Tums, Big Red Gum, 7 Up, or Ginger Chews for the nausea. Saltines or Ritz is you don't have salt restrictions
Members of this forum........we always take good care of each other. Thanks for your support and invaluable information. Seems like when I think all my questions are answered, something else comes up. Wishing each of you the absolute best!!
Bee.... Transfusion is usually only reserved for someone who would be in a dangerous area as far as HGB. Altho 9.1 is fairly low and very well may make you feel crappy ,it usually is not considered dangerous,(unless there is some underlying cardiac issues,)
It seems the general wisdom (according to Dr. Shiffman in the presentation I have linked below) that if one is UND .then a slight dose reduction in Riba is a good course of action ,given that there was no decrease in overall SVR in trials with Victrelis when this was done.
However, your reduction of 600mg at one time is certainly not a "slight " one and hopfully your doctor is aware of the protocol.
If your HGB. has risen and you can increase the dose of Riba(at least closer to ideal amount.that would be great, however it sounds like .as others have said Procrit may be necessary as you are still quite early in tx.
Good luck Bee..and here is that presentation by Shiffman if you have not seen it and are interested in having a look.... go to the 5th slide titled " Strategies for Mgmt. of Adverse Effects"
If you have not already ,you will have to register for the site ,however it is free and is one of the better ones for reference.
Oops, I should have read more carefully when I did your poll, what I actually voted on was what my own experience was, and that was Riba dose reduction. I was in a trial with Incivek where no rescue drugs were used. My hgb dropped below 10 at wk 3 so my Riba was cut from 1200 to 600 for the next 3 wks. Then I was increased to 1000mg for a couple of wks. I pushed to have my dose upped to 1200 again. Then after just 2 more wks on the 1200 I dropped below 10 again and kept going all the way down to 9.1. It took 4 wks of Riba dose reduction to 600 before I came back up above 10, at which point I went back to 1000 and stayed there for the remainder of tx. Out of 24 wks, I was dose-reduced for a total of 7 wks, and still SVR'ed with Incivek. So, that's just my experience and I know you're txing with Victrelis, not Incivek. I, too, was very concerned about the Riba reductions, so I wanted to offer you a scenario with a happy outcome : ) knowing that you and your doc will make the best decision for you.
I'd be pushing for procrit in your circumstances to give your HGB a chance to come up on a continuous basis. Transfusion will help but only so long. Your dosage reductions have been significant and ongoing and I'd want to reduce any negative impact from that by reducing or eliminating dosage reduction where necessary. If they'll give you procrit, I'd go for that. You could also ask for an iron stores test to determine if your iron levels will work with you or against you with regards to procrit, you may need supplementation to make it work effectively and might as well find out.
A number of us were on procrit as a maintenance dose for the duration of treatment after an initial improvement because our HGB would come back up but not stay up so if your doc does go for procrit, be aware that withdrawing it may see your hgb go back down...maybe, maybe not, but be prepared to discuss maintenance dosage of procrit if necessary ongoing until you're much further along in treatment or simply for the duration to avoid dosage reduction.
Thanks again for this information. I am rushing this morning, but I am reading this over again, as it gives me some footing. Not sure how this thread looks on your screen, but if you click on "view results" of this poll, you will see a pie chart that (at the time of this posting) shows the majority of you leaning toward Procrit. I am taking everything into consideration.
This is my 7th day of dose reduction, and since I am feeling better, I see no reason why the dose can't be increased again (even if it's not a full one). Enjoy your day :)
I agree with the comments made by can do and frijole, 400 riba is too low and a drastic adjustment and considering a transfusion with HGB in the 9s is quite unusual unless you have a cardiac issues or some other medical condition that warrants it. When my HGB when to the 9s my doc reduced me from 1200 to 1000 units per day, I was in a trial for victrelis.
RBC transfusions should not be given simply in response to a given blood hemoglobin or hematocrit laboratory value; a clinical indication must also be present.
No Further Justification for RBC Transfusion is Required if One or More of the Following can be found in the medical record:
1. Critically ill patients (e.g., trauma, perioperative period, sepsis):
a. < 7 g/dL (< 21% HCT) without significant heart, lung, vascular, renal or neural disease.
b. <9 g/dL ( 30%.
2. Acutely bleeding patients as might be indicated by: Rapid (within four hours) blood loss of > 15% of total blood volume regardless of the measured blood hemoglobin or hematocrit value. This would correspond to a recorded volume lost, or need to replace with intravenous fluids, of 10 ml per kg patient body weight (e.g. 700 ml blood loss with 4 hrs in a 70 kg patient).
Other evidence for serious acute bleeding might include mention in the medical record of circumstances often associated with acute, rapid, serious, massive bleeding (e.g., "massive or serious gastrointestinal bleeding" or "acute hemoptysis") in a patient with hemoglobin < 10 g/dl (hematocrit < 30%).
3. Patients with marrow failure and blood hemoglobin concentration < 10 g/dl (HCT < 30%) PLUS a diagnosis of progenitor cell transplant or cancer such as leukemia, lymphoma, carcinoma, sarcoma, or precancerous state or evidence of severe bone marrow hypoplasia as by the diagnosis of aplastic or hypoplastic anemia.
4. Patients with chronic anemia (myelofibrosis, refractory anemia, chronic inflammation) with blood hemoglobin concentration < 8 g/dl (HCT < 24%) PLUS evidence of either diminished circulating blood volume (hypovolemia), poor oxygen delivery to tissues (hypoxia or cyanosis), congestive heart failure, or angina (chest pains believed to be of ischemic cardiac origin). If the clinical criteria for transfusion are not mentioned in the physician's note, they may be suggested by the following criteria present in the medical record:
a. systolic blood pressure 40 mm Hg within 4 hrs prior to transfusion
b. diastolic blood pressure 40 mm Hg within 4 hrs prior to transfusion
c. Heart rate > 100/min. within 4 hrs prior to transfusion
d. Pulse oximetry of < 90% saturation or arterial blood PO2 < 70 mm Hg
e. radiology report noting cardiomegaly or pulmonary edema
f. peripheral edema and/or, rales in chest and/or, gallop heart sounds"
In my trial for victrelis transfusions were not allowed if you were to continue treatment. HGB had to drop below 7.5 before treatment was stopped. A combination of procrit and dose reductions were used to control anemia. Riba reductions or increases were methodical.
Regardless of whether procrit was used or not, In the 9s there was a reduction of 200mgs riba per day, in the 8s another 200 mgs per day, in the 7s, another 200 mgs per day. Increases worked in the same manner. Less then 600 MGs per day of riba was considered ineffective.
thanks for posting - that was very informative.
I must say, to all of my treating friends with hemoglobin under 10, this is a new world for me. I am now at 9.6 and waiting word from the doctor's office about Procrit. I am wiped out and functioning is limited. I never got into the 9s during my first treatment because I had procrit when I reached 10.8. I am finding the 9s a lot harder to deal with than the 10s and cannot even imagine what it is like to have hemoglobin under 9.
I have no desire to dose reduce. I have read all the data on Clinical Care Options and still don't trust the information. I do not want to reduce treatment drugs even though I have been UND since week 6. First treatment I was UND for over 36 weeks and still relapsed. I feel that maxiimum ribavirin is essential for success.
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