Aa
Riba Dose reduction
.A. week or so ago I decided to reduce Riba instead of doing Procrit shot, One, I am getting closer to the end and also I, on that particular day,I could not consider another drug or shot. I was having melt downs, was pale, fatigued, sleeping in each morning, my husband was getting very concerned about me. I finally called doctor with new blood work results hoping she would say to reduce drug. My Hgb was sitting around 9.2 for a while. She felt I was stable (really???) and to try to hang in there but I knew I could not. The anemia was getting to me. I was afraid to drive, I was seeing things that were not there, etc...Under all that I was feeling like a failure with treatment. I knew that doing treatment was not going to make me feel "good" and I was expecting the worse but mentally I was tired. So, we reduced it from 1000 to 800. I can't tell you what a difference this has made. This past week has been fantastic. Been to gym each day, did spinning bike and 3 pilates classes, have motivating thoughts about what I can do next....it has been amazing. I guess where my head goes is why did she not recommend this sooner. All those months of feeling crappy but I guess I thought that is how I was suppose to feel. I don't know if this is making sense and I have an appointment in Seattle on Weds to discuss this so I guess my question is...did anyone else get quick results when they reduced the Riba dose???
Thanks....Mo
Thanks....Mo
i had my riba reduced from 800 to 600 because my hgb went down to 9.7. i've gone to cardio classes 3x/weekly since the beginning of tx. but honestly i haven't broke into a sweat the whole time. i figure that just moving is good and it's a social thing for me also. i have great friends in my classes that always ask about my health. i have 9 1/2 weeks left. can't wait to feel like me again. good luck with your future. belle
For me it was a few days when I started noticing a difference but when they tested me 10 days after dose reduction I had gone from 9.2 to about 9.4 which I was really shocked,I thought for sure it was up to 10!!
Hang in there, you are new into tx just about at the phase where you body is going to figure out there is something really big going on and with all the chemicals your putting in your body be sure to drink TONS of water, all day I remember seeing the doctor about week 6 for the same symptoms you are having. They did an EKG, all was fine. Keep in close contact with your doctor..
Hang in there, you are new into tx just about at the phase where you body is going to figure out there is something really big going on and with all the chemicals your putting in your body be sure to drink TONS of water, all day I remember seeing the doctor about week 6 for the same symptoms you are having. They did an EKG, all was fine. Keep in close contact with your doctor..
My doctor just reduced my RIBA from 1000 to 800 2 days ago. My hemoglobin went from 13.5 to 11.3 in a week, not too low, but I am unable to catch my breath and I feel like a brick is sitting on my chest. This is the worst symptom so far, I'm miserable and I'm only on week 4! How long should it be before I notice a difference?
Thank you so much for this information. I have been forcing myself to walk thinking it would help me get stronger. I appreciate your information
Ddd
Ddd
Thanks everyone and please don.t get the wrong idea, I am not pushing it! I do casual spinning, lay on floor during Pilates when I need and basically I go to gym just to move!! I am not trying to get in shape or workout. Trust me on this. I stop when I need to. But, thanks for your concerns and input.
I will see doctor on weds. In Seattle to discuss all this.
Hang in there everyone, there seems to be a lot of us on the last stretch of tx. I have looked at each week as each mile in a marathon. Will be glad when I can feel the finish line. Mo
I will see doctor on weds. In Seattle to discuss all this.
Hang in there everyone, there seems to be a lot of us on the last stretch of tx. I have looked at each week as each mile in a marathon. Will be glad when I can feel the finish line. Mo
I think I may ask my doc at my next appt if I could reduce from 1000 to 800. I just took shot 39 and Friday and would like to start tapering off for the last few weeks. I am on procrit and would like to get off of that ASAP! Would also like to start tapering off interferon instead of just stopping cold turkey... :) Hang in there and glad you are felling better.
I am reduced down to 400 again, hgb at 8.6 I kept it at 800 as long as I could and hgb just kept dropping, he said 400 I dropped to 600 and finally the last couple of days I have gone down to 400 mgs, only 3 -4 weeks to go, and yes I am working on the farm just have to stop alot and rest. except for the blood transfusion in Dec I have been at mid to low 8s the whole time, I am ready to be off this crap I don't like the way my heart pounds all the time.
yikes spinning on riba! i have been spinning 4x weekly since a few months after tx ended. i could barely climb one flight of steps at work when my hemoglobin was at 10 during most of my tx. and i was on 800 the entire time as i have always been a skinny dame. please dont over do even when it is tempting. i believe this is the message from frijole but i did not have the attention span to read the medical jargon. my patience has barely improved since ending tx but was never good! i am glad u are feeling better as the reduction is better than the rescue drugs as long as it is sufficient to keep virus at bay. best of luck, babs
Mo
I don't know about going to the gym and pilates right now. I think you may be pushing yourself too much. When you have anemia there is only so much blood that can be pushed out by the heart. You don't need you heart to be under strain.
This is from a book on understanding anemia about how the body reacts to anemia:
http://web2.iadfw.net/uthman/unanemia/unanemia_ch1.html
Increased cardiac output. The volume of blood the heart pumps through itself per unit time is called the cardiac output. In the normal resting state, the heart pumps about 5 liters of blood every minute, abbreviated 5 L/min. This means that the heart is easily capable of pumping the body's total blood volume through its chambers in one minute. Actually it is capable of much more than that. When there is a greater demand for oxygen, as during vigorous exercise, the heart can increase its output manyfold, to as much as 30 L/min. It does this by increasing not only the number of beats per minute (the heart rate) but also the volume of blood pumped with each stroke (the stroke volume). Mathematically, the cardiac output can be calculated by multiplying the heart rate times the stroke volume. In anemia, the cardiac output increases, and that allows more hemoglobin to be exposed to the peripheral tissues, making up for the decreased hemoglobin concentration. Accordingly, the heart rate increases, which gives us one of the cardinal clinical manifestations of anemia, tachycardia, or fast heart rate.
The heart does not act alone to increase the cardiac output. It has to have cooperation from the peripheral tissues and the blood itself. If nothing changes in the body but the heart rate and stroke volume, the heart will be trying to pump blood faster into a fixed, unchanging bed of blood vessels. This is like trying to squeeze thick dishwasher detergent gel out of its container by pushing harder. The only way to make the gel dribble out faster is to increase the pressure. Analogously, in the body, to push more blood through an ungiving vascular bed would require a higher blood pressure. Higher blood pressure would cause the heart to work harder, because it would have to pump against a high pressure head, just like a muscle has to work harder to lift a heavier weight. Clearly this is not in the best interest of the body. Fortunately, the blood pressure is kept from going up by two factors. The first is the viscosity of anemic blood. Viscosity is the quality of a fluid which tends to cause it to resist being propelled through a tube or opening. Thin, anemic blood is less viscous than normal blood and can be pushed through the vascular bed with less pressure. The second factor is the blood vessels themselves. The wall of each small artery or vein contains one or more layers of muscle capable of responding to nerve signals by contracting. This causes the vessel to close down to a smaller caliber and be more resistant to the flow of blood. Other nerve impulses cause the muscles to relax, letting the vessels expand to a wider caliber and allowing more blood to flow with less resistance. In the anemic patient, the brain sends signals to the muscles around the small vessels telling them to relax and open up. The result is less impediment to the flow of blood. Therefore, because of less peripheral vessel resistance and thinnet, less viscous blood, the cardiac output can rise without causing the blood pressure to go up.
Redistribution of blood flow. The various organs of the body are quite capable of cutting deals among themselves when times are bad. In the case of anemia, all the organs conjoin to protect the two most oxygen-demanding organs in the body, the brain and the heart. If these organs don't get enough oxygen, the rest of the body is in real trouble. Fortunately, two other organs can get by without nearly as much blood as they normally enjoy in good times. The first of these is the skin. As a response to anemia, small blood vessels in the skin contract, causing a greater resistance to the flow of blood than is present in more vital organs. Since the blood being pumped out of the heart will preferentially follow the path of least resistance, it will go through the more vital organs faster than it will through skin with contracted vessels. The result is a partial diversion of blood from the skin to other organs. The second organ which sacrifices its right to blood supply is the kidney. Now the kidney is a very vital organ, to be sure, but it is normally endowed with much more blood flow than it needs to stay alive and function properly. Both kidneys, taken together, weight about 350 grams (or about 1/2 of 1 percent of the total body weight), but they receive 20 percent of the cardiac output, or about 1 liter per minute. Gram for gram, then, the kidneys receive 50 times the cardiac output of the body as a whole. Clearly they could give up some of that for the benefit of their fellow organs, and as part of the adaptation to anemia, they do so.
The diversion of blood flow from the skin causes one of the cardinal clinical features of anemia--pallor. Pallor is the pale color observed in the skin of a light-skinned anemic individual, and in the mucous membranes and nailbeds of all anemic individuals, light-skinned or otherwise. It should be noted that anemic patients are pale not because their blood is thin (anemic blood is just as opaque and highly colored as normal blood), but because the diversion of blood means that there is less of it in the skin, and more of the pale color of bloodless human tissue shows through.
Decrease of hemoglobin-oxygen affinity. Earlier we discussed how the affinity (or the "willingness" to bind) between oxygen and hemoglobin changed with the number of oxygen molecules gained or lost by hemoglobin. It turns out that hemoglobin-oxygen affinity can be accomplished by other chemical means as well. There is a simple organic acid, called 2,3-diphosphoglycerate (2,3-DPG) that is elaborated within the red cell under anemic conditions. This 2,3-DPG causes hemoglobin to bind oxygen less avidly and to give up as much to the starved tissues as possible. Of course, the other side of the coin is that oxygen is more difficult to pick up in the lungs, but, since the respiratory system is not the main concern in an anemic patient, something has to give, and the healthy system ends up taking up the slack for the sick one.
I don't know about going to the gym and pilates right now. I think you may be pushing yourself too much. When you have anemia there is only so much blood that can be pushed out by the heart. You don't need you heart to be under strain.
This is from a book on understanding anemia about how the body reacts to anemia:
http://web2.iadfw.net/uthman/unanemia/unanemia_ch1.html
Increased cardiac output. The volume of blood the heart pumps through itself per unit time is called the cardiac output. In the normal resting state, the heart pumps about 5 liters of blood every minute, abbreviated 5 L/min. This means that the heart is easily capable of pumping the body's total blood volume through its chambers in one minute. Actually it is capable of much more than that. When there is a greater demand for oxygen, as during vigorous exercise, the heart can increase its output manyfold, to as much as 30 L/min. It does this by increasing not only the number of beats per minute (the heart rate) but also the volume of blood pumped with each stroke (the stroke volume). Mathematically, the cardiac output can be calculated by multiplying the heart rate times the stroke volume. In anemia, the cardiac output increases, and that allows more hemoglobin to be exposed to the peripheral tissues, making up for the decreased hemoglobin concentration. Accordingly, the heart rate increases, which gives us one of the cardinal clinical manifestations of anemia, tachycardia, or fast heart rate.
The heart does not act alone to increase the cardiac output. It has to have cooperation from the peripheral tissues and the blood itself. If nothing changes in the body but the heart rate and stroke volume, the heart will be trying to pump blood faster into a fixed, unchanging bed of blood vessels. This is like trying to squeeze thick dishwasher detergent gel out of its container by pushing harder. The only way to make the gel dribble out faster is to increase the pressure. Analogously, in the body, to push more blood through an ungiving vascular bed would require a higher blood pressure. Higher blood pressure would cause the heart to work harder, because it would have to pump against a high pressure head, just like a muscle has to work harder to lift a heavier weight. Clearly this is not in the best interest of the body. Fortunately, the blood pressure is kept from going up by two factors. The first is the viscosity of anemic blood. Viscosity is the quality of a fluid which tends to cause it to resist being propelled through a tube or opening. Thin, anemic blood is less viscous than normal blood and can be pushed through the vascular bed with less pressure. The second factor is the blood vessels themselves. The wall of each small artery or vein contains one or more layers of muscle capable of responding to nerve signals by contracting. This causes the vessel to close down to a smaller caliber and be more resistant to the flow of blood. Other nerve impulses cause the muscles to relax, letting the vessels expand to a wider caliber and allowing more blood to flow with less resistance. In the anemic patient, the brain sends signals to the muscles around the small vessels telling them to relax and open up. The result is less impediment to the flow of blood. Therefore, because of less peripheral vessel resistance and thinnet, less viscous blood, the cardiac output can rise without causing the blood pressure to go up.
Redistribution of blood flow. The various organs of the body are quite capable of cutting deals among themselves when times are bad. In the case of anemia, all the organs conjoin to protect the two most oxygen-demanding organs in the body, the brain and the heart. If these organs don't get enough oxygen, the rest of the body is in real trouble. Fortunately, two other organs can get by without nearly as much blood as they normally enjoy in good times. The first of these is the skin. As a response to anemia, small blood vessels in the skin contract, causing a greater resistance to the flow of blood than is present in more vital organs. Since the blood being pumped out of the heart will preferentially follow the path of least resistance, it will go through the more vital organs faster than it will through skin with contracted vessels. The result is a partial diversion of blood from the skin to other organs. The second organ which sacrifices its right to blood supply is the kidney. Now the kidney is a very vital organ, to be sure, but it is normally endowed with much more blood flow than it needs to stay alive and function properly. Both kidneys, taken together, weight about 350 grams (or about 1/2 of 1 percent of the total body weight), but they receive 20 percent of the cardiac output, or about 1 liter per minute. Gram for gram, then, the kidneys receive 50 times the cardiac output of the body as a whole. Clearly they could give up some of that for the benefit of their fellow organs, and as part of the adaptation to anemia, they do so.
The diversion of blood flow from the skin causes one of the cardinal clinical features of anemia--pallor. Pallor is the pale color observed in the skin of a light-skinned anemic individual, and in the mucous membranes and nailbeds of all anemic individuals, light-skinned or otherwise. It should be noted that anemic patients are pale not because their blood is thin (anemic blood is just as opaque and highly colored as normal blood), but because the diversion of blood means that there is less of it in the skin, and more of the pale color of bloodless human tissue shows through.
Decrease of hemoglobin-oxygen affinity. Earlier we discussed how the affinity (or the "willingness" to bind) between oxygen and hemoglobin changed with the number of oxygen molecules gained or lost by hemoglobin. It turns out that hemoglobin-oxygen affinity can be accomplished by other chemical means as well. There is a simple organic acid, called 2,3-diphosphoglycerate (2,3-DPG) that is elaborated within the red cell under anemic conditions. This 2,3-DPG causes hemoglobin to bind oxygen less avidly and to give up as much to the starved tissues as possible. Of course, the other side of the coin is that oxygen is more difficult to pick up in the lungs, but, since the respiratory system is not the main concern in an anemic patient, something has to give, and the healthy system ends up taking up the slack for the sick one.
Agree with working dog, hope you take it easy even though feeling better. It seems to defy logic but the more active I am the more anemic I get. Good luck.
Hi Mo, my husband is in week 19 of triple with Inc. His NP reduced his Riba in week 12 from 1200 to 800. His hgb was only in the 11's, so not technically anemic, but he had symptoms of anemia (shortness of breath, fatigue, weakness, pale, etc.). He felt almost immediately better, and was able to increase it back up to 1200 two weeks later, about week 14, and he's been OK.
Advocate1955
Advocate1955
Good to hear of your improvment.
Hope you remain stable.
It's so motivating to hear from braves souls like you.
Hope you continue to feel better.
Reva
Hope you remain stable.
It's so motivating to hear from braves souls like you.
Hope you continue to feel better.
Reva
Thanks everyone. Yes, it is amazing how some doctors think one way and some the others. I am looking forward to having a conversation with the clinic while in Seattle on weds. I do know that my doctor goes by studies only beings she is at a research hospital and she did say that with no studies being done on dose reduction in small women (no small women in the study)
That why she was hesitant to reduce my dose. Anyway, I know I feel better and if this is how I will feel until the end of tx, I will take it!
That why she was hesitant to reduce my dose. Anyway, I know I feel better and if this is how I will feel until the end of tx, I will take it!
Mo, I was on Vic and at week 14 my hgb went down to 9.2, I felt terrible and thought I was having a heart attack! I reduced from 1000 to 800 and remained there thru the end of tx. I felt much better within a couple of days. A few times I tried to up the dose again, but it affected me immediately so I went right back to 800. I am 5 weeks post tx and was UND at week 4 post! I feel great already, nearly back to normal.. except no hair yet! Good luck to you and glad you are feeling better.
Hi I am so glad you are feeling better and that the doctor allowed you to reduce. My HBGB was 9.7 from a normal of 14.8 and for whatever reason my doc said I was "stable" too. It is odd to me how some docs will let a patient go low while others treat as soon as you get below 10.
It was frustrating on the days I could not get out of bed or catch my breath.
So glad you were able to get through to the doc
Dee.
It was frustrating on the days I could not get out of bed or catch my breath.
So glad you were able to get through to the doc
Dee.
Hi Mo - I too reduced my dosage for the last 10 days or so but I had been UND from 2 weeks on. My HGB was the same as yours - hovering around low 9's high 8's and I was very sick. The other thing tough is I was on 1200 mg at 130 pounds and had dropped to 120 pounds but was really not being monitored by the Dr. So, unauthorized, I went to 100o mg on my own and I have to say that the small reduction allowed me to start a new job and finish tx.
Best to you - you're almost there!!
Best to you - you're almost there!!
hi mo....i hope you can take it easy....i worry about folks that push it while on tx or even a while after....i did reduce my riba a couple times and yes it did help right away but it only made it possible for me to continue tx...i still couldn't do much at all....i'm sure you'll be alright just take it easy...billy
So happy to hear you're feeling better Mo. Amazing how such a small dose reduction can make such a big difference in how you feel. And "having motivating thoughts about what I can do next" - now THAT is inspiring. Big smiles.
I have no personal experience with Riba dose reductions.
I have no personal experience with Riba dose reductions.
Mine was reduced from 800 to 600 when I complained of getting short of breath. I'm feeling better too:)
The first week I only noticed a slight change but by week 2 I was feeling better, however my interferon got reduced then, too.
The first week I only noticed a slight change but by week 2 I was feeling better, however my interferon got reduced then, too.
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