Aa
Extension of Treatment Due to Reduction of Riba Dosage
There was a thread a while back regarding late/delayed responders and extension of treatment. Generally, the consensus was that it's beneficial to extend treatment to 36 weeks from the point you clear the virus.
I had a two point log drop at my 12 week VL count, which I guess is on track. Unfortunately, I've had to significantly drop my riba dosages to half due to anemia. We're trying to get the anemia under control with procrit and the lowered dosages of riba. My hope is to eventually be able to increase the riba to at least 80% of the intended dose.
My question is, my doctor pretty much refused to talk about extending treatment. My fear is that if he can keep me on at this rate, he will; but it'll be worthless to stop at 48 weeks at such a low dose (600 mg of riba). He says he's never extended treatment; however, he's also never worked with Infergen and admits to not having as much experience as the nurse practitioner.
He also has said that he assumes I won't be able to stay the course due to anemia, so the discussion of extension of treatment is moot. Thankfully, he has agreed to refer me to a hepatologist in my insurance group. Does anyone have any information of extension of treatment due to temporary drop in dose? At 7.6-8.4 hgb, transfusions are out of the question, for some reason. Anyone hear of anemia being treated with both procrit and transfusions. I'm on 60,000 a week now for procrit.
I had a two point log drop at my 12 week VL count, which I guess is on track. Unfortunately, I've had to significantly drop my riba dosages to half due to anemia. We're trying to get the anemia under control with procrit and the lowered dosages of riba. My hope is to eventually be able to increase the riba to at least 80% of the intended dose.
My question is, my doctor pretty much refused to talk about extending treatment. My fear is that if he can keep me on at this rate, he will; but it'll be worthless to stop at 48 weeks at such a low dose (600 mg of riba). He says he's never extended treatment; however, he's also never worked with Infergen and admits to not having as much experience as the nurse practitioner.
He also has said that he assumes I won't be able to stay the course due to anemia, so the discussion of extension of treatment is moot. Thankfully, he has agreed to refer me to a hepatologist in my insurance group. Does anyone have any information of extension of treatment due to temporary drop in dose? At 7.6-8.4 hgb, transfusions are out of the question, for some reason. Anyone hear of anemia being treated with both procrit and transfusions. I'm on 60,000 a week now for procrit.
Thank you both for your kind words. Angela you have been through so much! I appreciate all you have been through and thank you so much for sharing your story. That "off" button or when you are "done" with the anemia I understand very much...but mine come at unfortunate times of the day while I have alot to do! I seem to have less energy in the afternoon and more at night! It seems at evening hours I get a "rush" of energy that is lacking often at peak day hours!! Odd I'm sure? (which is why I'm typing you at 12:15 A.M.!!! I'm glad I don't feel like I'm going through this blood battle alone.... Most of the battle in my opinion is beat by a postitive attitude....it can get you through ALOT as you know....and you also have a wonderful attitude Angela!
I'll keep you posted on what happens with my situation. I look forward to see the hemotologist to get additional advice and help. In the meantime YOU take care of yourself and I'm hoping the best to you Angela.
MN: Thank you for your words again. I appreciate you informing me on how to get the ANC number. I usually pride myself in being armed with a list of questions for the doctor as well as getting every lab report in my hands as copies which is why I'm embarrassed I didn't know the details of my last labs very well (not knowing the ANC for the first time in 25 weeks as the doctor usually figures it and writes it on my labs which I didn't get this time!) Sometimes I get overwhelmed with all the information as I did this past week when they told me I'm in "danger" zone with my whites and reds and I think I forgot to ask pertinent qeustions and get my lab copies! I scolded myself later as once your out of the office it gets harder to get the attention as you know! I got rattled with the news I guess. Anyway thank you for thinking of me .....and ANGELA ...as we face our ongoing blood battles. I will keep you posted as I learn more but it is wonderful knowing you both are "out there" wishing me and everyone here well in this journey!
Best to you both,
Scott
I'll keep you posted on what happens with my situation. I look forward to see the hemotologist to get additional advice and help. In the meantime YOU take care of yourself and I'm hoping the best to you Angela.
MN: Thank you for your words again. I appreciate you informing me on how to get the ANC number. I usually pride myself in being armed with a list of questions for the doctor as well as getting every lab report in my hands as copies which is why I'm embarrassed I didn't know the details of my last labs very well (not knowing the ANC for the first time in 25 weeks as the doctor usually figures it and writes it on my labs which I didn't get this time!) Sometimes I get overwhelmed with all the information as I did this past week when they told me I'm in "danger" zone with my whites and reds and I think I forgot to ask pertinent qeustions and get my lab copies! I scolded myself later as once your out of the office it gets harder to get the attention as you know! I got rattled with the news I guess. Anyway thank you for thinking of me .....and ANGELA ...as we face our ongoing blood battles. I will keep you posted as I learn more but it is wonderful knowing you both are "out there" wishing me and everyone here well in this journey!
Best to you both,
Scott
I'll hold both of you in the Light.
Angela, it's no wonder you didn't protest that first time when they took you off the drugs. The way it seemed to me when I was so low in the water, it was like my energy and even my life had a volume knob, and it was gradually getting turned down. It was fairly painless, but I had visions of it being turned all the way down, with me less and less visible, audible... going out without a whimper, until everything was just still. Luckily that didn't happen, but that's what that consistent very low RBC felt like.
Scott, I think you can estimate the ANC by halving the WBC. That is usually pretty close to the truth.
I hope both of you are getting copies of every lab; by and by, you can see the patterns. Insist on copies of all the labs, back to the beginning of this. You'll be glad you did. Someday you may have to go see somebody new, and you'll have all the info you need. In any case, every time you go to the doc, have your questions written down; if you hand a doc a finite list, docs are more likely to give decent answers to all of them. AND you don't have to remember all the questions, just the answers... Write down notes after the appointments, too. Angela, knowing when you started tx may be interesting as a reference point... make some very graphic counting thing, that helped me a lot. Never mind how corny... it helps you graph progress. MN
Angela, it's no wonder you didn't protest that first time when they took you off the drugs. The way it seemed to me when I was so low in the water, it was like my energy and even my life had a volume knob, and it was gradually getting turned down. It was fairly painless, but I had visions of it being turned all the way down, with me less and less visible, audible... going out without a whimper, until everything was just still. Luckily that didn't happen, but that's what that consistent very low RBC felt like.
Scott, I think you can estimate the ANC by halving the WBC. That is usually pretty close to the truth.
I hope both of you are getting copies of every lab; by and by, you can see the patterns. Insist on copies of all the labs, back to the beginning of this. You'll be glad you did. Someday you may have to go see somebody new, and you'll have all the info you need. In any case, every time you go to the doc, have your questions written down; if you hand a doc a finite list, docs are more likely to give decent answers to all of them. AND you don't have to remember all the questions, just the answers... Write down notes after the appointments, too. Angela, knowing when you started tx may be interesting as a reference point... make some very graphic counting thing, that helped me a lot. Never mind how corny... it helps you graph progress. MN
Hey Scott,
Thanks so much for all your kind encouragement. It really helps to feel that solidarity with someone going through the same thing. And it really means a lot that you're thinking of my PCR. Thank you. I think I'll go in on Saturday morning to do that test, right after Friday's interferon test. I will definitely keep you posted.
As for my tx hx, this is actually my second attempt. Last year I started at a VL of over 1 million (I'm pretty sure, but not positive). Hgb dropped to 7's about Week 12. They tried to intervene with Procrit, but I only was allowed one dose before they cancelled tx. So the procrit was never given enough time to work. The sad part is that a few weeks later, my PCR came back at 832. The really unfortunate part that I regret is that I thought I could do it myself. I just followed what the doc said. Didn't really go online and seek support or do research. I think things would have been different had I done that. In any event, I was really basically told, sorry, you can't tolerate it, but you're young. Wait for something else to come down the pipeline.
As you can imagine, my initial response was sadness, really. After a week of moping, I started to get mad. It finally occurred to me to ask for a second opinion or an appeal. I don't know why I didn't ask while I was sitting in that office being dismissed from the gastro dept.
Anyway, it was surprisingly easy. I requested a new GI doc, who I'm really loving right now. He's easy to talk to, he calls me whenever he has any information, and he's open-minded and has no ego problems (meaning he'll listen to what I've researched, admit that in some areas the nurse practitioner is more experienced, and check with other specialists for advice -- my first GI doc wouldn't even talk to me after the consult. I only saw him once. He basically treated me on paper through the N.P.)
I saw a hematologist just to put into context my history of thalassemia. The new doc thought to put me on iron for a month or two just to see if it would help raise my hgb before starting a new round. Figured it wouldn't hurt and would be great if that's all I needed. I agreed.
After simple iron pills didn't work, they put me on procrit pre-tx and got my hgb from a baseline of 11.3 to 13.3. Wow. What a feeling. I have never in my life been that energetic before. I was out in the backyard pulling weeds taller than myself. <sigh> <g>
That was in February of this year I believe. Once I was at 13.3, I recommenced tx. So I think I may be around the same time frame as you. Oh, and I'm a genotype 1. I don't know if it's a or b though. I'm kind of embarrassed I don't know which week I'm at. I was writing it down in a calendar book that I have seemed to misplace, but I gather I'm at around month 5.
This time around I started with a VL of 370,000, and dropped to 3,700 at around week 12, the necessary 2 log drop. Actually, it was a little more. I wasn't sure if it was because they switched me from PegIntron (which I was on last year), but the N.P. thinks it's interferon resistance. I'm not sure. I still wish they would have kept me in PegIntron, but I have to admit my sx are so much lessened on Pegasys.
Actually, I've been very grateful about the sx. The first shot of Pegasys rendered me on the couch with a goodly-sized headache, remedied by pizza and a movie. After that, I really haven't had any sx. I wake up the next morning and go about my thing.
The low hgb is a weird sx. Like you, I'm okay during the day. Even if I feel particularly energetic, once I get home I usually run out of steam. I have stopped going into the restaurant after work during the weekdays, and I tend to go to bed directly after dinner, which can be as early as 6:00, if I can get out of work early enough and traffic is good. It's kind of funny. It's like an off button. Once I hit that part of the day, it's over. Stick a fork in me. I'm done. <G> And sometimes when I wake up, I feel like I'm waking up underwater and moving underwater as I make my way across the house. After the blood gets flowing, it tends to get a little better.
As for the 80,000 units of procrit, my mom told me that she was once put on that dosage (for low hgb due to thalassemia). Her doctor was very aggressive and had her due two shots weekly of 40,000 units each (which is where I'm at now). After a little while though, he tapered her off. She ended up at a point where she could take 20,000 units once a month to maintain basically a comfortable lifestyle. But she didn't have to deal with another drug trying its best to maim and kill her RBCs. That kind of makes it more of a fight.
In any event, my mom's now 57 years old. She no longer takes procrit. She has her weekly pilates, spinning, and some other class that she takes at the gym. Her only concerns are with hemachromatosis, which she's working on. In general, things are good.
You seem to be doing very well with the lowered hgb, though that seems quite low for a male. But your attitude's great, and your doctors sound like they're willing to consult with you and make decisions WITH you, which is wonderful.
I do hope your WBC's start to come up. I'll be thinking about you on Tuesday. Just have to hang in there, keep calm (that advice is for me <g>), smile a lot, and know that there's a light at the end of the tunnel, and it'll be so worth it.
Let me know how your appt goes with your hematologist.
Have a happy Wednesday!
Angela
Thanks so much for all your kind encouragement. It really helps to feel that solidarity with someone going through the same thing. And it really means a lot that you're thinking of my PCR. Thank you. I think I'll go in on Saturday morning to do that test, right after Friday's interferon test. I will definitely keep you posted.
As for my tx hx, this is actually my second attempt. Last year I started at a VL of over 1 million (I'm pretty sure, but not positive). Hgb dropped to 7's about Week 12. They tried to intervene with Procrit, but I only was allowed one dose before they cancelled tx. So the procrit was never given enough time to work. The sad part is that a few weeks later, my PCR came back at 832. The really unfortunate part that I regret is that I thought I could do it myself. I just followed what the doc said. Didn't really go online and seek support or do research. I think things would have been different had I done that. In any event, I was really basically told, sorry, you can't tolerate it, but you're young. Wait for something else to come down the pipeline.
As you can imagine, my initial response was sadness, really. After a week of moping, I started to get mad. It finally occurred to me to ask for a second opinion or an appeal. I don't know why I didn't ask while I was sitting in that office being dismissed from the gastro dept.
Anyway, it was surprisingly easy. I requested a new GI doc, who I'm really loving right now. He's easy to talk to, he calls me whenever he has any information, and he's open-minded and has no ego problems (meaning he'll listen to what I've researched, admit that in some areas the nurse practitioner is more experienced, and check with other specialists for advice -- my first GI doc wouldn't even talk to me after the consult. I only saw him once. He basically treated me on paper through the N.P.)
I saw a hematologist just to put into context my history of thalassemia. The new doc thought to put me on iron for a month or two just to see if it would help raise my hgb before starting a new round. Figured it wouldn't hurt and would be great if that's all I needed. I agreed.
After simple iron pills didn't work, they put me on procrit pre-tx and got my hgb from a baseline of 11.3 to 13.3. Wow. What a feeling. I have never in my life been that energetic before. I was out in the backyard pulling weeds taller than myself. <sigh> <g>
That was in February of this year I believe. Once I was at 13.3, I recommenced tx. So I think I may be around the same time frame as you. Oh, and I'm a genotype 1. I don't know if it's a or b though. I'm kind of embarrassed I don't know which week I'm at. I was writing it down in a calendar book that I have seemed to misplace, but I gather I'm at around month 5.
This time around I started with a VL of 370,000, and dropped to 3,700 at around week 12, the necessary 2 log drop. Actually, it was a little more. I wasn't sure if it was because they switched me from PegIntron (which I was on last year), but the N.P. thinks it's interferon resistance. I'm not sure. I still wish they would have kept me in PegIntron, but I have to admit my sx are so much lessened on Pegasys.
Actually, I've been very grateful about the sx. The first shot of Pegasys rendered me on the couch with a goodly-sized headache, remedied by pizza and a movie. After that, I really haven't had any sx. I wake up the next morning and go about my thing.
The low hgb is a weird sx. Like you, I'm okay during the day. Even if I feel particularly energetic, once I get home I usually run out of steam. I have stopped going into the restaurant after work during the weekdays, and I tend to go to bed directly after dinner, which can be as early as 6:00, if I can get out of work early enough and traffic is good. It's kind of funny. It's like an off button. Once I hit that part of the day, it's over. Stick a fork in me. I'm done. <G> And sometimes when I wake up, I feel like I'm waking up underwater and moving underwater as I make my way across the house. After the blood gets flowing, it tends to get a little better.
As for the 80,000 units of procrit, my mom told me that she was once put on that dosage (for low hgb due to thalassemia). Her doctor was very aggressive and had her due two shots weekly of 40,000 units each (which is where I'm at now). After a little while though, he tapered her off. She ended up at a point where she could take 20,000 units once a month to maintain basically a comfortable lifestyle. But she didn't have to deal with another drug trying its best to maim and kill her RBCs. That kind of makes it more of a fight.
In any event, my mom's now 57 years old. She no longer takes procrit. She has her weekly pilates, spinning, and some other class that she takes at the gym. Her only concerns are with hemachromatosis, which she's working on. In general, things are good.
You seem to be doing very well with the lowered hgb, though that seems quite low for a male. But your attitude's great, and your doctors sound like they're willing to consult with you and make decisions WITH you, which is wonderful.
I do hope your WBC's start to come up. I'll be thinking about you on Tuesday. Just have to hang in there, keep calm (that advice is for me <g>), smile a lot, and know that there's a light at the end of the tunnel, and it'll be so worth it.
Let me know how your appt goes with your hematologist.
Have a happy Wednesday!
Angela
Hey Maj,
Wow! Thanks so much for sharing your story. That makes me feel so much more encouraged...you just don't know. And I'm so happy you were able to achieve SVR.
Best of health to you. And thanks again!
Angela
Wow! Thanks so much for sharing your story. That makes me feel so much more encouraged...you just don't know. And I'm so happy you were able to achieve SVR.
Best of health to you. And thanks again!
Angela
I am REALLY HAPPY FOR YOU! Great that your team is willing to work with yoou and be flexible this time.
best to you
best to you
Wasabi Pea, I've been thinking about you during your anemia challenges as it looks like we are in similar situations. Talk about an inspiration......YOU ARE the inspiration. You have such a great outlook faced with what you are dealing with AND being told you may have to extend tx for an additional year. Now that is inspirational! I will have you on my mind as you get your PCR...I am so hoping that your PCR is great news. Please keep us posted as I will be anxious to hear your news...either way you deserve to be complimented on your great attitude. I KNOW how frustrating these blood levels can be. Forgive me but I don't know some of your history such as when did you start tx and how far along are you at this point?
I was impressed your doctor was willing to get you on 80,000 units of Procrit...That gives me hope. I was told the max would be 60,000 which I still am discussing with the doctor.
As for myself along with the anemia which is now (got the results back yesterday) at a whopping 7.5 hemoglobin....down from 7.8 at my last test. I've been there now for over 2 months. I am still functioning well but have increased dizzy spells and some vision blurriness, (heart palpaltaions have stopped....VERY happy about that!)..The doctor however is less concerned with my hemoglobin and now is more concerned with the WBC counts...never a dull moment but I refuse to let this intimidate me! My WBC is now at 1.7 down from last 2.0 and the doctor is now sending me to a hemotologist this coming tuesday. I assume neupogen will be in order now. The doctor told me they won't address my low hemoglobin until I get in a more "safe" zone with my WBC. (I don't know what my ANC is right now but I assume it is not good....dummy me forgot to ask last phone meeting) I will discuss with the new doctor all my blood problems and come up with a plan of attack.....I/m of course hoping that I can remain on my current dosing but I will listen, educate myself even more, and hold on tight for this next 5 months of tx and do what I have to to not jeapordize my health.....I'm afraid it is going to be a roller coaster ride.
I am thinking of you with your upcoming PCR. In a strange way I feel very conected to you as we are going through alot of the same stresses......If only the blood would cooperate all else would be positive!
Best to you Wasabi Pea...I'll look for a future post from you with news on your situation and especially news with your PCR.
Scott
I was impressed your doctor was willing to get you on 80,000 units of Procrit...That gives me hope. I was told the max would be 60,000 which I still am discussing with the doctor.
As for myself along with the anemia which is now (got the results back yesterday) at a whopping 7.5 hemoglobin....down from 7.8 at my last test. I've been there now for over 2 months. I am still functioning well but have increased dizzy spells and some vision blurriness, (heart palpaltaions have stopped....VERY happy about that!)..The doctor however is less concerned with my hemoglobin and now is more concerned with the WBC counts...never a dull moment but I refuse to let this intimidate me! My WBC is now at 1.7 down from last 2.0 and the doctor is now sending me to a hemotologist this coming tuesday. I assume neupogen will be in order now. The doctor told me they won't address my low hemoglobin until I get in a more "safe" zone with my WBC. (I don't know what my ANC is right now but I assume it is not good....dummy me forgot to ask last phone meeting) I will discuss with the new doctor all my blood problems and come up with a plan of attack.....I/m of course hoping that I can remain on my current dosing but I will listen, educate myself even more, and hold on tight for this next 5 months of tx and do what I have to to not jeapordize my health.....I'm afraid it is going to be a roller coaster ride.
I am thinking of you with your upcoming PCR. In a strange way I feel very conected to you as we are going through alot of the same stresses......If only the blood would cooperate all else would be positive!
Best to you Wasabi Pea...I'll look for a future post from you with news on your situation and especially news with your PCR.
Scott
Congrats on such a rapid and dramatic VL drop. Wow! Bodes well. Hope it just disappears on ya!
Apparently, Procrit can be dosed up to 80,000 units weekly.
I just got a call my GI doctor yesterday. Although he seems inexperienced, he made my day by contacting a hepatologist, and they've come up with a treatment plan that I'm fairly comfortable with.
Because my hgb dropped back down to 7.8 (it seems to vary quite often....7.6 to 8.4. to 7.8 in the span of a week or two), they've decided to up me from 20,000 units three times a week to 40,000 units twice a week.
What they've decided to do is discontinue Ribavirin for now, continue with the Pegasys injections, wait until my hgb comes back up to 9.0, then start the riba back up again, and then just play with it until they find a good balance between the Procrit and the Riba. Once I start back on Riba, then I'll stay on tx another year. Wow. Trying to keep my eye on the big picture.
The only hitch is that my PCR test has to show that the virus hasn't rebounded significantly from my last test. I go and get that test done in a couple days, so keep your fingers crossed for me. If the VL has rebounded, they're going to discontinue tx, period. Trying very, very hard not to worry about that.
But I wanted to thank everyone for all their responses. You guys really made my day, and you really help give me the confidence to demand to be involved in tx decisions with my doctor. If it weren't for you guys, I wouldn't know what to ask for. If I didn't ask, my doctors would have discontinued me again without bothering with all the adjustments in Procrit and what have you.
Thank you.
I just got a call my GI doctor yesterday. Although he seems inexperienced, he made my day by contacting a hepatologist, and they've come up with a treatment plan that I'm fairly comfortable with.
Because my hgb dropped back down to 7.8 (it seems to vary quite often....7.6 to 8.4. to 7.8 in the span of a week or two), they've decided to up me from 20,000 units three times a week to 40,000 units twice a week.
What they've decided to do is discontinue Ribavirin for now, continue with the Pegasys injections, wait until my hgb comes back up to 9.0, then start the riba back up again, and then just play with it until they find a good balance between the Procrit and the Riba. Once I start back on Riba, then I'll stay on tx another year. Wow. Trying to keep my eye on the big picture.
The only hitch is that my PCR test has to show that the virus hasn't rebounded significantly from my last test. I go and get that test done in a couple days, so keep your fingers crossed for me. If the VL has rebounded, they're going to discontinue tx, period. Trying very, very hard not to worry about that.
But I wanted to thank everyone for all their responses. You guys really made my day, and you really help give me the confidence to demand to be involved in tx decisions with my doctor. If it weren't for you guys, I wouldn't know what to ask for. If I didn't ask, my doctors would have discontinued me again without bothering with all the adjustments in Procrit and what have you.
Thank you.
Hey Sue,
Thanks so much for all your support. You're right. Doug is pretty darn amazing. Actually, I'm finding all of you guys on the forum are pretty darn amazing.
Things are starting to look up. I received an appt. yesterday for September 1, to see the hepatologist. Later on in the day, my GI doc called and told me he conferred with another hepatologist, and laid out a plan of treatment I can live with. I just didn't want to continue tx without even considering extension of the duration.
Just keep your fingers crossed for me. I have to take my PCR this week. If the virus has popped back up significantly, they're going to take me off altogether. If not, then we're looking at another year of tx. I really want that chance at the tx.
Thanks again. Hope all's going well for you.
Angela
Thanks so much for all your support. You're right. Doug is pretty darn amazing. Actually, I'm finding all of you guys on the forum are pretty darn amazing.
Things are starting to look up. I received an appt. yesterday for September 1, to see the hepatologist. Later on in the day, my GI doc called and told me he conferred with another hepatologist, and laid out a plan of treatment I can live with. I just didn't want to continue tx without even considering extension of the duration.
Just keep your fingers crossed for me. I have to take my PCR this week. If the virus has popped back up significantly, they're going to take me off altogether. If not, then we're looking at another year of tx. I really want that chance at the tx.
Thanks again. Hope all's going well for you.
Angela
Hi Scott,
How are you doing today? I'm in awe of you walking everyday. You're an inspiration.
I guess my hgb last Thursday came back at 7.8, back down from 8.4. But yesterday I was extremely energetic...shopped for two hours, commuted for four hours, and did some prep work at my family's restaurant after my regular job. Pretty good day for me.
I did get my iron stores taken on Thursday. All the doc told me is that the saturation's a little high, but that's probably being caused by the interferon. Although the docs don't seem to want to address this for some reason, I think part of the problem is my thalassemia. It's a hemoglobinopathy that runs in the family. I'm not familiar with Hypo Homo Cysteine, but if your brother has it, it sounds reasonable that you might have this trait...which could be a factor in your RBC production abilities.
They also raised my procrit from 60,000 to 80,000. I really was only on the 40,000 maybe two or three weeks, and the 60,000 for one week. I wonder if they're just panicking over the low hgb. They seem to get really excited about it. I realize their fears about the risks involved. But I don't know. I had an uncle who was a professor in Taiwan who taught regularly. He was either at a 4 point something or a 6 point something. That was due to his thalassemia. The point is, though, people adjust to these levels. He was always low. He did take a nap after every lecture, but he did all right for himself. <g> Lived a fairly long life.
As I mentioned in the above posts, as long as my PCR remained low during this period of the lowered riba, then they'll continue to treat me. If not, then they want to pull the plug. Trying so hard not to stress about it. Keep your fingers crossed. I'll have my PCR done this week.
Hope things are working out with you? Any luck on getting that test run?
Angela
How are you doing today? I'm in awe of you walking everyday. You're an inspiration.
I guess my hgb last Thursday came back at 7.8, back down from 8.4. But yesterday I was extremely energetic...shopped for two hours, commuted for four hours, and did some prep work at my family's restaurant after my regular job. Pretty good day for me.
I did get my iron stores taken on Thursday. All the doc told me is that the saturation's a little high, but that's probably being caused by the interferon. Although the docs don't seem to want to address this for some reason, I think part of the problem is my thalassemia. It's a hemoglobinopathy that runs in the family. I'm not familiar with Hypo Homo Cysteine, but if your brother has it, it sounds reasonable that you might have this trait...which could be a factor in your RBC production abilities.
They also raised my procrit from 60,000 to 80,000. I really was only on the 40,000 maybe two or three weeks, and the 60,000 for one week. I wonder if they're just panicking over the low hgb. They seem to get really excited about it. I realize their fears about the risks involved. But I don't know. I had an uncle who was a professor in Taiwan who taught regularly. He was either at a 4 point something or a 6 point something. That was due to his thalassemia. The point is, though, people adjust to these levels. He was always low. He did take a nap after every lecture, but he did all right for himself. <g> Lived a fairly long life.
As I mentioned in the above posts, as long as my PCR remained low during this period of the lowered riba, then they'll continue to treat me. If not, then they want to pull the plug. Trying so hard not to stress about it. Keep your fingers crossed. I'll have my PCR done this week.
Hope things are working out with you? Any luck on getting that test run?
Angela
Scott, I'm glad I could help you (and others) with my story. The struggle was worth it.
That cough: it has everything to do with getting oxygen around in your body. It's a Riba Cough. It can be sooooo exhausting. Do not take stuff like Tessalon, a typical Rx cough depressant, which is liver unfriendly; or guafenesin syrup, which is an expectorant - your pipes are probably dry as it is. Neither of these will touch the cough as long as you're anemic. You may get some relief with a single-ingredient Dextromethorphan syrup -DM (I think Delsym brand is alcohol free). Benadryl or Tavist type antihistamine may help, too, and benadryl is a good sleep aid; avoid decongestants, avoid other ingredients in multi-symptom remedies.
A fascinating thing I learned about good doctors: as they shake hands with you, they may linger on your hand for a mini-second, give you a little squeeze, and look down. They look at your nails, they feel your skin tone and temperature. That tells them quite a bit about your overall condition! If you pinch down on the inside of a finger, or pinch the tip of your finger, you can drain it of blood and turn it "white"... how fast does the color return? Another gauge of anemia. So is whether you have half-moons in your nails. In my case, my lips virtually disappeared...
As for weight loss, I went down 27lb. I actually loved that, since I have been fighting the battle of the bulge for decades. But all that weight flooded back; just after I bought a bunch of new clothes, about 3-7 months post tx. Alas, I'm trying to lose it again. The fun never ends.
Maj Neni
That cough: it has everything to do with getting oxygen around in your body. It's a Riba Cough. It can be sooooo exhausting. Do not take stuff like Tessalon, a typical Rx cough depressant, which is liver unfriendly; or guafenesin syrup, which is an expectorant - your pipes are probably dry as it is. Neither of these will touch the cough as long as you're anemic. You may get some relief with a single-ingredient Dextromethorphan syrup -DM (I think Delsym brand is alcohol free). Benadryl or Tavist type antihistamine may help, too, and benadryl is a good sleep aid; avoid decongestants, avoid other ingredients in multi-symptom remedies.
A fascinating thing I learned about good doctors: as they shake hands with you, they may linger on your hand for a mini-second, give you a little squeeze, and look down. They look at your nails, they feel your skin tone and temperature. That tells them quite a bit about your overall condition! If you pinch down on the inside of a finger, or pinch the tip of your finger, you can drain it of blood and turn it "white"... how fast does the color return? Another gauge of anemia. So is whether you have half-moons in your nails. In my case, my lips virtually disappeared...
As for weight loss, I went down 27lb. I actually loved that, since I have been fighting the battle of the bulge for decades. But all that weight flooded back; just after I bought a bunch of new clothes, about 3-7 months post tx. Alas, I'm trying to lose it again. The fun never ends.
Maj Neni
I am so glad you shared that one maj neni, it always helps those venturing into unknown territory to hear how it went for others before them. I too have read where people have SVR in spite of riba reduction.
dutch, at wk 27, reducing riba by 200mg for a few wks should not impact a lot. we want you safe! have you had a cardiac eval before tx?
dutch, at wk 27, reducing riba by 200mg for a few wks should not impact a lot. we want you safe! have you had a cardiac eval before tx?
You guys are now going through territory I had to wade through. I started Procrit in week 4 at 40K; this was my third try, the first two being rather short due to anemia and nutropenia. One of these starts ended with transfusions and a 3-day stay in the ICU. But the third time, I was clear at 12 weeks, and I wasn't about to mess this up.
We ruled out anemia due to other causes. To cover my bases, I took Super-B complex, Folic acid, Vitamin E, Vitamin C, Calcium w/Vit.D, Zinc, and a Centrum Silver type multivitamin daily throughout the 48 weeks (and have continued this). My apetite was poor; most foods tasted yukky. I took my water, though.
I was ordered off Riba totally for about 16 days wk.24-27, and started taking iron; started Riba again wk.27 at 600, increasing weekly back up to 1200; wk.32, back down to Riba at 800; then upped Procrit to 60K/wk; Riba to 600 wk.37, then stopped iron.
I was seriously concerned about Riba reduction; I consulted Erin/GIPA. On her advice, I went back up to Riba 800 at wk.42 with Procrit up to 80K/wk.; pushed up to Riba 1000 wk.44-48 (with Procrit still at 80K/wk.)
Most of the time during the whole tx, my HGB hovered between 7 and 8. (I also had to do Neupogen starting wk.15 at 3 shots/wk. for 4 weeks; wks.17-27, 2 shots/wk.; wks.28-32, 1shot/wk.; and then back to 2 shots/wk. to the end of tx.)
In spite of all the Riba reduction - about 1/3 off in the second half of tx - I remained clear, and now have SVR past the one year mark. My red blood counts took about 8 - 10 weeks after tx to rebound to normal; the white count was back to normal within 2 weeks.
I don't encourage you to lower your Ribavirin dose, but it is possible to get to SVR even with reductions. It is not hopeless. Keep up your positive attitude, and try to laugh a lot. Quite possibly Riba is less critical in the second half of the tx, after you are undetectable. A CURE THAT KILLS YOU IS NOT ACCEPTABLE; so just be careful, stay closely monitored. There's no reason to think that the anemia management would change if you extend, so weigh extending separately. Chest pains and dizziness are anemia danger signals; caughing, pale lips and nails can give you an idea of your anemia status.
Good luck to all of you; hope you get SVR, too.
Maj Neni (former 1B with high VL)
We ruled out anemia due to other causes. To cover my bases, I took Super-B complex, Folic acid, Vitamin E, Vitamin C, Calcium w/Vit.D, Zinc, and a Centrum Silver type multivitamin daily throughout the 48 weeks (and have continued this). My apetite was poor; most foods tasted yukky. I took my water, though.
I was ordered off Riba totally for about 16 days wk.24-27, and started taking iron; started Riba again wk.27 at 600, increasing weekly back up to 1200; wk.32, back down to Riba at 800; then upped Procrit to 60K/wk; Riba to 600 wk.37, then stopped iron.
I was seriously concerned about Riba reduction; I consulted Erin/GIPA. On her advice, I went back up to Riba 800 at wk.42 with Procrit up to 80K/wk.; pushed up to Riba 1000 wk.44-48 (with Procrit still at 80K/wk.)
Most of the time during the whole tx, my HGB hovered between 7 and 8. (I also had to do Neupogen starting wk.15 at 3 shots/wk. for 4 weeks; wks.17-27, 2 shots/wk.; wks.28-32, 1shot/wk.; and then back to 2 shots/wk. to the end of tx.)
In spite of all the Riba reduction - about 1/3 off in the second half of tx - I remained clear, and now have SVR past the one year mark. My red blood counts took about 8 - 10 weeks after tx to rebound to normal; the white count was back to normal within 2 weeks.
I don't encourage you to lower your Ribavirin dose, but it is possible to get to SVR even with reductions. It is not hopeless. Keep up your positive attitude, and try to laugh a lot. Quite possibly Riba is less critical in the second half of the tx, after you are undetectable. A CURE THAT KILLS YOU IS NOT ACCEPTABLE; so just be careful, stay closely monitored. There's no reason to think that the anemia management would change if you extend, so weigh extending separately. Chest pains and dizziness are anemia danger signals; caughing, pale lips and nails can give you an idea of your anemia status.
Good luck to all of you; hope you get SVR, too.
Maj Neni (former 1B with high VL)
majneni: I feel MORE encouraged from your letter than I've felt in some time! This doesn't have to be a dead end as you have proved! Wow, you went thgough alot and the outcome was wonderful for you! I'm so pleased you accomplished your goal of SVR and the advice you have given above to not only myself but anyone who is fighting this severe anemia problem will feel so much encouragement from reading this thread. I now feel so much more confident that not only can I continue to "design" this tx to my anemia but also not necessarily compromise the final SVR outcome by dose reduction.....although that option will still be my last hold out....it still makes me nervous. My doctor keeps telling me he has never had any other patients with Geno #4 and he says that I'm an "experiment" and he doesnt' know how dose reduction will impact my outcome....so I'd rather try many of the other "tricks" you mentioned and help myself get through this. Obviously the first thing I need to do is get an increased dose of Procrit, and discuss with my doctor intaking iron which up to this point has been off my list of things I can take. This will have to be evaluated.
As for my symptoms so far I've had a cough that WAS persistant but for the past several weeks has been minimal even though my hemo is 7.7. I get dizzy alot but it isn't constant all day long. My doctor is monitoring me to keep me safe but he is suspecting my body is actually getting used to these low levels as he keeps reminding me I'm NOT having the same reaction to other patients at these very low numbers. He said most of his patients are in bed at these numbers but I'm very active still. I guess I consider myslef lucky but have been very worried about how this story is going to go for the next 5 months. Your thread was SO HELPFUL to relieve my mind that this will not be a dead end road to my tx! I may not panic now when I hear those words that dose reduction are in order.....at least for a temporary time if need be. I thank you for sharing your story and am so very happy for you majneni that your goals of SVR were yours to have!!!! You hung in there through alot and the reward at the end was yours to have!....wonderful! Scott
Cuteus: Thank you again for your support with all your kind words. I too want to be sure I'm safe and between me being the constant squeeky wheel at my doctors office and all the blood work that is done regularly I feel fairly safe for the moment. I have had a cardio evaluation before tx and all was well....I did however 4 weeks ago have what was diagnosed as heart palpaltations (never had them and didn't know what was happening) which lasted for almost 2 days which was unnerving and the doctor didn't seem to be too terribly concerned....he said alot of his anemic patients have these on and off but to let them know if it happens again and I will get a Cardio workup if it lasts more than a day next time. So for 4 weeks I've had no palpaltations at all so I think my body is doing alright. I'm waiting on the new blood work results tomorrow so I will know much more about if I've again dropped lower or if I'm status quo. Thank you for your ongoing support. I don't know what I'd do without the care and understanding I get here. I hope you are well cuteus. Scott
As for my symptoms so far I've had a cough that WAS persistant but for the past several weeks has been minimal even though my hemo is 7.7. I get dizzy alot but it isn't constant all day long. My doctor is monitoring me to keep me safe but he is suspecting my body is actually getting used to these low levels as he keeps reminding me I'm NOT having the same reaction to other patients at these very low numbers. He said most of his patients are in bed at these numbers but I'm very active still. I guess I consider myslef lucky but have been very worried about how this story is going to go for the next 5 months. Your thread was SO HELPFUL to relieve my mind that this will not be a dead end road to my tx! I may not panic now when I hear those words that dose reduction are in order.....at least for a temporary time if need be. I thank you for sharing your story and am so very happy for you majneni that your goals of SVR were yours to have!!!! You hung in there through alot and the reward at the end was yours to have!....wonderful! Scott
Cuteus: Thank you again for your support with all your kind words. I too want to be sure I'm safe and between me being the constant squeeky wheel at my doctors office and all the blood work that is done regularly I feel fairly safe for the moment. I have had a cardio evaluation before tx and all was well....I did however 4 weeks ago have what was diagnosed as heart palpaltations (never had them and didn't know what was happening) which lasted for almost 2 days which was unnerving and the doctor didn't seem to be too terribly concerned....he said alot of his anemic patients have these on and off but to let them know if it happens again and I will get a Cardio workup if it lasts more than a day next time. So for 4 weeks I've had no palpaltations at all so I think my body is doing alright. I'm waiting on the new blood work results tomorrow so I will know much more about if I've again dropped lower or if I'm status quo. Thank you for your ongoing support. I don't know what I'd do without the care and understanding I get here. I hope you are well cuteus. Scott
Leany: thank you for confirming that Transfusions are based on how symptomatic a person is. Also for confirming that I can take up to 60,000 units/week of Procrit. I'm sure I'll be approaching the doctor this coming week about increasing my Procit to 60,000. Since I'm not terribly symptomatic as of yet at 7.7 hemo I assume I have alot of leeway regarding considering the transfusion at this point. My doctor did mention it but seems to not pushing this on me as I'm functioning reasonably well with the low numbers. Thank you for your input Leany. I appreciate the information and support.
Cuteus: I too couldn't find any information supporting increased dose of Procrit to the 80,000 units...this must have been as you suspected an unconventional approach for the person on dialysis. I will however try to get the increased dose to 60,000 to see if it helps at all if my counts are still under 8.0 when I get the results next week. I am suspect there is something else going on in my body creating the severe anemia which will take time to figure out. I've come too far in tx to let this anemia get in my way so I'm keeping very positive and in the meantime I'm continuing to live my life as normal as possible and in a way I'm enjoying mystifying my doctors! They keep saying they don't understand where I'm getting my energy from but keep doing what I'm doing! My quality of life is still intact and I still feel SVR is within my reach. I'm starting week 27/48 tomrrow night and my biggest worry is that I will have to reduce my dose of Riba or cut my tx short which I'm very fearful about. In the meantime thank you for your kind words and support. It makes so much difference knowing others are there who understand what we are going through and support one another.....not just this anemia issue but ALL the issues we confront while trying to become Hep C free and achieve SVR and move on with our lives.
Thank you Cuteus.
Scott
Cuteus: I too couldn't find any information supporting increased dose of Procrit to the 80,000 units...this must have been as you suspected an unconventional approach for the person on dialysis. I will however try to get the increased dose to 60,000 to see if it helps at all if my counts are still under 8.0 when I get the results next week. I am suspect there is something else going on in my body creating the severe anemia which will take time to figure out. I've come too far in tx to let this anemia get in my way so I'm keeping very positive and in the meantime I'm continuing to live my life as normal as possible and in a way I'm enjoying mystifying my doctors! They keep saying they don't understand where I'm getting my energy from but keep doing what I'm doing! My quality of life is still intact and I still feel SVR is within my reach. I'm starting week 27/48 tomrrow night and my biggest worry is that I will have to reduce my dose of Riba or cut my tx short which I'm very fearful about. In the meantime thank you for your kind words and support. It makes so much difference knowing others are there who understand what we are going through and support one another.....not just this anemia issue but ALL the issues we confront while trying to become Hep C free and achieve SVR and move on with our lives.
Thank you Cuteus.
Scott
the person on 80,000units of Procrit was on dialysis, but I did not find anything resembling that dose in the recommendations. I believe the nephrologist was dosing beyond the protocol in hopes of assisting this patient. I did see some studies where the dose was increased to 600units/kg biw or tiw. It is advisable to also check the folic acid and vit b12 titer in the blood, make sure the hemolytic anemia is not compounded by other types of anemia. I can't believe dutch boy can power walk at 7.7 hgb! I could hardly breathe at 10.2! trutly amazing.
Hopefully the hematologist can come up with a way to ensure your svr, those of you struggling with severe anemia.
I had to fight my GI to extend but if my counts were not holding, I doubt it that he would have agreed. As long as the counts held, he finally agreed to continue.
Hopefully the hematologist can come up with a way to ensure your svr, those of you struggling with severe anemia.
I had to fight my GI to extend but if my counts were not holding, I doubt it that he would have agreed. As long as the counts held, he finally agreed to continue.
Transfusion usually takes place depending upon symptoms. I have encountered those with 2.0- 4.0 hgb without any symptoms . However, in the Oncology 7.5 is rough number.
Procrit is used up to 60k a week .
I have had my Riba reduced to 600 mg related to anemia and other side effects. Just drew my 12 week labs , so I will see the results of the dose reduction . I had dropped from 4.6 million viral load to 54 at 4 weeks.
Procrit is used up to 60k a week .
I have had my Riba reduced to 600 mg related to anemia and other side effects. Just drew my 12 week labs , so I will see the results of the dose reduction . I had dropped from 4.6 million viral load to 54 at 4 weeks.
Angela, I am basically in a similar boat as you are right now regarding my anemia. I've been stuck at about 7.7 hemoglobin for nearly 2 months and the doctor is now mentioning dose reduction (which I told him I would not agree to yet!). Transfusions have been mentioned but not yet seriously discussed. I too gather that you have to have even lower numbers to get the transfusion and any other means to help boost the hemoglobin should be taken. Does anyone know how low your hemoglobin must go before a transfusion is needed? My doctors are amazed and mystified that I'm doing as well as I am with the quality of my life issues with 7.7 hemoglobin but I think it is starting to take it's toll on me. Increased dizzy spells, and blurry vision to name two....but I remain very "up" and active, working, and keeping up my excercise of walking every day. I am always in good spirits( thank goodness no riba rage at all!) and don't let it get me down.
As per jmjm's suggestion regarding iron stores....I got my blood drawn this a.m. and had my CBC as well as ferratin levels and iron/tibc checked..no news as of today on the test. I told my doctor I refuse to lower my dose (which he agrees with...I'm so lucky!) of Riba so we are now looking into other solutions like my iron stores and raising my Procrit to 60,000/units week from 40,000/units week. The odd thing to my doctor is that I responded beautifully in the first several months of tx with Procrit and then it dropped drastically and stayed there. I recently learned my brother just tested positive for Hyper Homo Cysteine which is a gene for Hyper coagulation. If one has this the body lacks the enzyme that metabolizes vitamins B12, B6, and Folic acid....all aids in building rec blood cells. So I'm going to have a phone conference with my doctor regarding this to see if I may also have this problem and possibly get this test done. Does any one have any experience with this Hypo Homo Cysteine and it interfering with tx by creating severe anemia for Hep C? Angela you may want to discuss this with your new doctor when you see him. As for now I'm hoping to raise the Procrit and hope I just need more iron.....If it were not for the anemia I would be feeling very good minus the occassional brain fog and flu like symptoms.
Angela I hope you get the help you need from the hepatologist and you get clear advice and is willing to work with you in anyway to keep your tx in place. You are obviously responding.....now to just find a way to stay on tx! I feel for you as this has become a major issue for me as well......Everyone here is so caring and wonderful and filled with so much knowledge....it is great to have the support when things don't go quite as we hope! Everyone here has been through challenges. Best to you Angel and let us know what you learn.....I will be personally very interested.
Scott
As per jmjm's suggestion regarding iron stores....I got my blood drawn this a.m. and had my CBC as well as ferratin levels and iron/tibc checked..no news as of today on the test. I told my doctor I refuse to lower my dose (which he agrees with...I'm so lucky!) of Riba so we are now looking into other solutions like my iron stores and raising my Procrit to 60,000/units week from 40,000/units week. The odd thing to my doctor is that I responded beautifully in the first several months of tx with Procrit and then it dropped drastically and stayed there. I recently learned my brother just tested positive for Hyper Homo Cysteine which is a gene for Hyper coagulation. If one has this the body lacks the enzyme that metabolizes vitamins B12, B6, and Folic acid....all aids in building rec blood cells. So I'm going to have a phone conference with my doctor regarding this to see if I may also have this problem and possibly get this test done. Does any one have any experience with this Hypo Homo Cysteine and it interfering with tx by creating severe anemia for Hep C? Angela you may want to discuss this with your new doctor when you see him. As for now I'm hoping to raise the Procrit and hope I just need more iron.....If it were not for the anemia I would be feeling very good minus the occassional brain fog and flu like symptoms.
Angela I hope you get the help you need from the hepatologist and you get clear advice and is willing to work with you in anyway to keep your tx in place. You are obviously responding.....now to just find a way to stay on tx! I feel for you as this has become a major issue for me as well......Everyone here is so caring and wonderful and filled with so much knowledge....it is great to have the support when things don't go quite as we hope! Everyone here has been through challenges. Best to you Angel and let us know what you learn.....I will be personally very interested.
Scott
Don't know about any studies but I agree with Califia that you should be having monthly PCR's during your lowered riba dose to make sure you're still clear.
Assuming you stay clear, I'd play it safe and extend treatment by the number of weeks you had your dose reduced. This is assuming you're a stage 0,1 or 2. If you're a stage 3 or 4, I'd do the same or 72 weeks, whichever is longer.
Regarding Procrit, make sure you have your iron stores checked. Procrit won't work if they're too low and you may need supplementation.
In any event, sounds like you need to see a doctor that is experienced with extended treatment, Infergen, Procrit intervention, etc.
Assuming you stay clear, I'd play it safe and extend treatment by the number of weeks you had your dose reduced. This is assuming you're a stage 0,1 or 2. If you're a stage 3 or 4, I'd do the same or 72 weeks, whichever is longer.
Regarding Procrit, make sure you have your iron stores checked. Procrit won't work if they're too low and you may need supplementation.
In any event, sounds like you need to see a doctor that is experienced with extended treatment, Infergen, Procrit intervention, etc.
Angela,
You are so right, Doug is amazing. He even has his brother-in-law in his home and is caring for him. His brother-in-law is on hospice due to liver failure but has made such strides since being at Doug's home! I am a little low on several of my blood counts and it's kind of beating me up, but Doug just keeps my spirits up. If he can go through what he does...I know I can handle this! I hope that he'll be able to respond back to you with some helpful info. I'm not sure if he'll be on the boards with his next transfusion on Monday, hopefully all will be well for him! I hope you find some better info from the hepatologist. How long before you get to see him?
Take care and rest as if you have any choice right now!
Smiles, Sue
You are so right, Doug is amazing. He even has his brother-in-law in his home and is caring for him. His brother-in-law is on hospice due to liver failure but has made such strides since being at Doug's home! I am a little low on several of my blood counts and it's kind of beating me up, but Doug just keeps my spirits up. If he can go through what he does...I know I can handle this! I hope that he'll be able to respond back to you with some helpful info. I'm not sure if he'll be on the boards with his next transfusion on Monday, hopefully all will be well for him! I hope you find some better info from the hepatologist. How long before you get to see him?
Take care and rest as if you have any choice right now!
Smiles, Sue
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
