Guest guest Posted February 13, 2002 Report Share Posted February 13, 2002 >>As much as I hate to say this, eat MEAT!!!!!!!!! << To the best of my understanding, the ribavarin induced anemia is not iron deficiency related, but has a different cause, so assuming that iron levels are normal then eating meat will not help. High iron levels are a known negative for HCV, so increasing them may not be a good thing, unless someone already had the iron deficiency anemia unrelated to the treatment. The other thing was there is some preliminery evidence that vit E may slow the onset of ribavarin induced anemia. From: Highlights in Liver Disease: News Service 10/7/99 Anti-Oxidant Vitamins Delay Ribavirin-Related Anemia in Patients on Combination Therapy Patients on combination therapy who took the antioxidant vitamins C and E delayed the onset of anemia. Hemolytic anemia is a serious side effect of combination therapy, attributable to the ribavirin component in the combination. This complication necessitates a reduction in the ribavirin dose for about 15% of all patients, according to Piken, M.D., Director of Research at South Bay Gastroenterology in Torrance, California. " Patients become anemic: they feel short of breath, become weaker, are unable to do their normal workload, " Dr. Piken says. One hypothesis is that ribavirin accumulates in red blood cells. " The red cells, because of the medications, are under what's called an oxidative stress, and the red cells break down at an earlier point in their life cycle. " To investigate a solution to this problem, Dr. Piken enrolled 12 previously untreated HCV patients in a study to look at the effects of antioxidant vitamins on anemia. Patients received 1,200 milligrams of ribavirin daily along with 3 million units of interferon alfa-2b three times a week. They also took two common over the counter vitamins daily-1000 milligrams of vitamin C and 800 IU(internatinal nits) of vitamin E. " We chose them because they have essentially no side effects, and many people are already taking them, " Dr. Piken says. Results were compared to a control group of 14 relapse patients who received combo therapy without any antioxidants. According to Dr. Piken, patients receiving the antioxidants show an initial benefit from the vitamins but that benefit declined by the end of three months of treatment. The antioxidants " appear to delay the onset and severity of the anemia, and patients receiving antioxidants do not require (ribavirin) dose reductions, compared to 22% of the people in the control group, " he says. Dr. Piken says the results merit further research. " We plan to run a larger study and also are currently making a decision on which type of antioxidant to use, " he says. " We would like to use more bio-available and perhaps stronger antioxidants. The forms of the vitamins, particularly C, could be improved to a more bio-avaiable vitamin C. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2002 Report Share Posted February 13, 2002 A second or third voice on eating meat for low RBC...don't do it. The anemia that is induced by tx is not an iron deficiency related anemia. Claudine can explain this much better than I can....but eating a lot of meat will do more harm then good. Iron is so bad for us and we need to stay away from it. Try folic acid...it helps the body produce red blood cells and has nothing to do with iron. Tatezi > >>As much as I hate to say this, eat MEAT!!!!!!!!! << > > To the best of my understanding, the ribavarin > induced anemia is not iron deficiency related, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2002 Report Share Posted February 13, 2002 yes it happened to me, i have been on tx for 8 wks. and I am loosing to much weight, 20,lbs,in 8 weeks, so the DR. told me to go and eat a hamburger once inwhile, I ALMOST PASSED OUT..lol good luck martine Re: Procrit >>As much as I hate to say this, eat MEAT!!!!!!!!! << To the best of my understanding, the ribavarin induced anemia is not iron deficiency related, but has a different cause, so assuming that iron levels are normal then eating meat will not help. High iron levels are a known negative for HCV, so increasing them may not be a good thing, unless someone already had the iron deficiency anemia unrelated to the treatment. The other thing was there is some preliminery evidence that vit E may slow the onset of ribavarin induced anemia. From: Highlights in Liver Disease: News Service 10/7/99 Anti-Oxidant Vitamins Delay Ribavirin-Related Anemia in Patients on Combination Therapy Patients on combination therapy who took the antioxidant vitamins C and E delayed the onset of anemia. Hemolytic anemia is a serious side effect of combination therapy, attributable to the ribavirin component in the combination. This complication necessitates a reduction in the ribavirin dose for about 15% of all patients, according to Piken, M.D., Director of Research at South Bay Gastroenterology in Torrance, California. " Patients become anemic: they feel short of breath, become weaker, are unable to do their normal workload, " Dr. Piken says. One hypothesis is that ribavirin accumulates in red blood cells. " The red cells, because of the medications, are under what's called an oxidative stress, and the red cells break down at an earlier point in their life cycle. " To investigate a solution to this problem, Dr. Piken enrolled 12 previously untreated HCV patients in a study to look at the effects of antioxidant vitamins on anemia. Patients received 1,200 milligrams of ribavirin daily along with 3 million units of interferon alfa-2b three times a week. They also took two common over the counter vitamins daily-1000 milligrams of vitamin C and 800 IU(internatinal nits) of vitamin E. " We chose them because they have essentially no side effects, and many people are already taking them, " Dr. Piken says. Results were compared to a control group of 14 relapse patients who received combo therapy without any antioxidants. According to Dr. Piken, patients receiving the antioxidants show an initial benefit from the vitamins but that benefit declined by the end of three months of treatment. The antioxidants " appear to delay the onset and severity of the anemia, and patients receiving antioxidants do not require (ribavirin) dose reductions, compared to 22% of the people in the control group, " he says. Dr. Piken says the results merit further research. " We plan to run a larger study and also are currently making a decision on which type of antioxidant to use, " he says. " We would like to use more bio-available and perhaps stronger antioxidants. The forms of the vitamins, particularly C, could be improved to a more bio-avaiable vitamin C. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2002 Report Share Posted February 13, 2002 Hey Connie I'm great! Will restart the high does interferon next monday ick! I keep telling myself, it's only a month I can do it. The 3 shots a week I give myself will be half the IV dose, the IV dose is 20mu, so surely it will be easier then. I hope I'm still miffed that the onc I'm using said he never had anyone on high dose interferon complain of side effects. I just wanted to slap him silly. I see him next Monday before tx. oy. Still dealing with the itching. Allergist gave me Clarinex and a cream with a steriod and cortisone in it. We'll see. Will let yall know what happens! Stay warm alley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2002 Report Share Posted February 13, 2002 In a message dated 2/13/2002 2:00:40 PM Eastern Standard Time, patriciajean@... writes: > Wierd, my gastro told me not to take Vitamin E on treatment and gave me a > prescription for folic acid. Man sometimes I wish these guys would make up > their collective minds! > Okay, my doc said take the Vitamin E, and the folic acid and EAT meat. However, I have a tendency towards iron deficiency anemia. So maybe you shouldn't eat meat. I followed the " can I eat it and have it stay in my body long enough to do any good " diet. grew me a garden that summer and I ate vegetables galore. But I can say, that I felt MUCH worse when I ate no meat. This includes energy level, too. Also Doc may have told me that because I was losing weight so rapidly, that he would have been happy if I'd eaten his desk. They can't be consistent, Alley, they don't know a lot more about this disease than we do. We are the OJT bunch. Oops. LOL, Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2002 Report Share Posted February 13, 2002 --- martine <photoart@...> wrote: > yes it happened to me, i have been on tx for 8 wks. and I am > loosing to much weight, 20,lbs,in 8 weeks, so the DR. told me to go > and eat a hamburger once inwhile, I ALMOST PASSED OUT..lol good > luck Make sure your doctor is checking your thyroid function! That can be a cause of excessive, fast weight gain. Especially is you are eating and eating, and STILL are loosing weight. Good luck! Claudine __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2006 Report Share Posted September 5, 2006 Is it true that procrit costs thousands of dollars? Does insurance pay for this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2006 Report Share Posted September 6, 2006 Right now insurance companies will not pay for it unless your IG is below 12. (Because your are using it for a " off-label use " ). Dr. Shoemaker uses it to bring down C4a levels. I was supposed to take 5 doses of 80 unit vials (if memory serves me correctly) over two weeks (injection every third day). You have to shop around. Walgreens had the 5 vials for $2,500. Walmart had them for $561.00. The other option I had here in AZ was to take a trip to Mexico. But called a few places and they didn't carry it. --- In , LiveSimply <quackadillian@...> wrote: > > Is it true that procrit costs thousands of dollars? > > Does insurance pay for this? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2006 Report Share Posted September 6, 2006 " 5 vials for $561 - $2500 " How often do people have to take this? I hope you don't mind me asking. Thats highway robbery... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2006 Report Share Posted September 8, 2006 Yes - it is highway robbery. That's why you have to shop around.... Dr. Shoemaker has you do a two week one-time dosing of it. Once every three days. So five doses total over 2 weeks.... --- In , LiveSimply <quackadillian@...> wrote: > > " 5 vials for $561 - $2500 " > > How often do people have to take this? I hope you don't mind me asking. > > Thats highway robbery... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 To find out if Dr. Shoemaker's Procrit trial is registered with the Government's Clinical Trial web site, as REQUIRED BY LAW, ask him for the " clinical trial I.D.# " . That number always begins with the prefix " NCT " . If he does not have an " NCT " number, then ask him for the I.D. number that HE assigned to his trial. You can search, by either number, on the web site. You also have to get the name of HIS RESEARCH INSTITUTE that is conducting the trial, because clinical trials are NOT searchable, on the government web site, under the personal names of the researchers. If you are afraid that he might be offended by your questions, the only other way to find out if his trial is registered with the government is to go to their web site, www.ClinicalTrials.gov, and read through ALL 214 REGISTERED TRIALS. I looked at the 2 line description of ALL 63 trials that are " still recruiting " , and did not see anything that fit the description. But, to do a thorough search,you would have to click on all 214 trials, to open up the 2 PAGE description of each trial, and read them carefully. REMEMBER, the personal name of researchers(doctors) are never mentioned in the descriptions. Good Luck! > > Is anyone participating in Dr. Shoemaker's procrit trial? > > Theresa > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 Thank You! It was jsut approved and I will look! > > > > Is anyone participating in Dr. Shoemaker's procrit trial? > > > > Theresa > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2006 Report Share Posted November 4, 2006 Theresa, If you find Dr. Shoemakers Procrit trial listed on the " ClinicalTrials " website, please post the trial number, so we can all look at it. It sounds interesting. Thanks. > > > > To find out if Dr. Shoemaker's Procrit trial is registered with > the > > Government's Clinical Trial web site, as REQUIRED BY LAW, ask him > > for the " clinical trial I.D.# " . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2006 Report Share Posted November 4, 2006 I didn't find it listed but someone had called the office and they told that person it was approved. Has anyone taken procrit as indicated and have their c4a go down? If so, what changes in tehir health were noted? I amw odnering what happens if the c4a gets very hgih.. Theresa > > > > > > To find out if Dr. Shoemaker's Procrit trial is registered with > > the > > > Government's Clinical Trial web site, as REQUIRED BY LAW, ask him > > > for the " clinical trial I.D.# " . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2006 Report Share Posted November 5, 2006 I'm not telling anyone else what to do, but if I were considering particpating in a clinical trial, I would, at least, ask the doctor for the clinical trial number that HIS OFFICE has given to his trial. With that number, it would be possible for me to review his clinical trial application on the government's clinical trials website, even BEFORE the government assigns it's own " NCT " number to the trial. Also, if I were a participant in a clinical trial, I would ask for a copy of the " informed consent " form that the doctor asks me to sign, to be a clinical trial participant. If the doctor gives me some medicine to take, WITHOUT asking me to sign such a form, I would RUN, NOT WALK, to the nearest exit. If I wanted to be extra-polite, I might pause long enough to say to the doctor: " Is this a clinical trial, or is this simply your decision to use Procrit for an OFF- LABEL treatment? " Under some circumstances, doctors are permitted to prescribe a drug that is FDA approved for a specific illness or medical condition, to persons suffering from a different medical condition. I don't know the details of such " off-label " use decisions, by doctors, but I DO KNOW that they usually don't tell the patient that it is an " off- label " use of the medication. I have experienced MANY instances, of such " off-label " prescribing, for my elderly parents, and I can't recall a single instance of any doctor asking them to sign any acknowledgement that they were being prescribed the medicine for an " off-label " use. There was one time, when a doctor suggested to my father, that he try injections of BOTOX for the " off-label " use of treating his headaches. Botox injections are ONLY FDA approved as a " cosmetic treatment " to reduce wrinkles in skin. Many doctors use it for various " off-label " treatments. In this ONE INSTANCE, the doctor sai that my father would have to sign a consent form for the injections. Since my father decided NOT to take the Botox injections, I have no way of knowing if the doctor would have had my father sign the consent form. I ASSUME, since Procrit is ALSO an injected medicine, your doctor might ask you to sign a consent form, since his use of Procrit, on you, is definitely an " off-label " use, since the term " c4a " is probably not printed on the medicines prescribing information. In a future posting, I will post a link to the Procrit " prescribing information " , so we can all look for the mention of " c4a " . I could be wrong, in my assumption. I am not a very trusting person. If YOU make your medical decisions, based on your trust of ANY doctor, without feeling the need for the legally required paperwork, I can only wish you the best of luck- you'll need it. > > I didn't find it listed but someone had called the office and they > told that person it was approved. > > Has anyone taken procrit as indicated and have their c4a go down? > If so, what changes in tehir health were noted? I amw odnering what > happens if the c4a gets very hgih.. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2006 Report Share Posted November 5, 2006 ph, The doctor is having folks sign the appropriate informed consent forms and you are right that you won't find current literature describing how this can lower C4A - that's the point of this trial. So, this trial follows the appropriate processes. But, certainly, everyone needs to be conscientiously make their decisions about participating. And, I can understanding your not being a very trusting person - I had just about given up on doctors altogether until I started seeing Dr. S. Procrit is only typically used for folks that have severe anemia due to cancer treatments, etc. However, one of the most popular " off-label " uses is by athletes to improve their endurance and performance by improving the oxygenation of the tissue. This was the drug that they had accused Lance of using in the Tour De France. My personal perspective is that those of us that have the opportunity to participate in this trial may finally actually have the energy to get through a normal day and actually still feel like a normal person. Of course, that also requires that we be away from the sources of molds and any potential contamination - I am far, far more worried about that than I am about an adverse outcomes or even legality of the Procrit trial itself. B. -------------- Original message -------------- From: " joseph salowitz " <josephsalowitz@...> I'm not telling anyone else what to do, but if I were considering particpating in a clinical trial, I would, at least, ask the doctor for the clinical trial number that HIS OFFICE has given to his trial. With that number, it would be possible for me to review his clinical trial application on the government's clinical trials website, even BEFORE the government assigns it's own " NCT " number to the trial. Also, if I were a participant in a clinical trial, I would ask for a copy of the " informed consent " form that the doctor asks me to sign, to be a clinical trial participant. If the doctor gives me some medicine to take, WITHOUT asking me to sign such a form, I would RUN, NOT WALK, to the nearest exit. If I wanted to be extra-polite, I might pause long enough to say to the doctor: " Is this a clinical trial, or is this simply your decision to use Procrit for an OFF- LABEL treatment? " Under some circumstances, doctors are permitted to prescribe a drug that is FDA approved for a specific illness or medical condition, to persons suffering from a different medical condition. I don't know the details of such " off-label " use decisions, by doctors, but I DO KNOW that they usually don't tell the patient that it is an " off- label " use of the medication. I have experienced MANY instances, of such " off-label " prescribing, for my elderly parents, and I can't recall a single instance of any doctor asking them to sign any acknowledgement that they were being prescribed the medicine for an " off-label " use. There was one time, when a doctor suggested to my father, that he try injections of BOTOX for the " off-label " use of treating his headaches. Botox injections are ONLY FDA approved as a " cosmetic treatment " to reduce wrinkles in skin. Many doctors use it for various " off-label " treatments. In this ONE INSTANCE, the doctor sai that my father would have to sign a consent form for the injections. Since my father decided NOT to take the Botox injections, I have no way of knowing if the doctor would have had my father sign the consent form. I ASSUME, since Procrit is ALSO an injected medicine, your doctor might ask you to sign a consent form, since his use of Procrit, on you, is definitely an " off-label " use, since the term " c4a " is probably not printed on the medicines prescribing information. In a future posting, I will post a link to the Procrit " prescribing information " , so we can all look for the mention of " c4a " . I could be wrong, in my assumption. I am not a very trusting person. If YOU make your medical decisions, based on your trust of ANY doctor, without feeling the need for the legally required paperwork, I can only wish you the best of luck- you'll need it. > > I didn't find it listed but someone had called the office and they > told that person it was approved. > > Has anyone taken procrit as indicated and have their c4a go down? > If so, what changes in tehir health were noted? I amw odnering what > happens if the c4a gets very hgih.. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2006 Report Share Posted November 5, 2006 Thank You so much for your comments. I am going to take them all to ehart and follow-up....won't be for amonth or so until I see the doctor....you sound very knowledeable in this area... I had never heard of an off label treatment. It is very interesting. is this what he does with the cholestyramine? It is fda approved for cholesterol but not for chronicneurotoxins? Theresa > > > > I didn't find it listed but someone had called the office and they > > told that person it was approved. > > > > Has anyone taken procrit as indicated and have their c4a go down? > > If so, what changes in tehir health were noted? I amw odnering > what > > happens if the c4a gets very hgih.. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2006 Report Share Posted November 5, 2006 , Are you participating i nthis trial? Have you started and if so do you notice any difference? > > > > I didn't find it listed but someone had called the office and they > > told that person it was approved. > > > > Has anyone taken procrit as indicated and have their c4a go down? > > If so, what changes in tehir health were noted? I amw odnering > what > > happens if the c4a gets very hgih.. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2006 Report Share Posted November 5, 2006 I took Procrit and improved greatly!! I had horrible fatigue which made me stay in bed most of the day. I slept for at least 10 hrs. a night and many times needed a nap in the afternoon .Using Procit every 5 days increased my hemoglobin and the severe pain in my elbows also disappeared along with the morning stiffness in all my joints!!! Worked for me!! Sue Are you participating i nthis trial? Have you started and if so do > you notice any difference?- you notice I Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2006 Report Share Posted November 5, 2006 > Are you participating i nthis trial? Have you started and if so do > you notice any difference?--- I am signed up for the trial, but can't start it until I'm out of the house that we believe has been contributing to my ongoing illness. I'm hoping to move within a week. At that time, I've first got to verify that the new place is safe by going off the CSM for two weeks (after I've been there for 2 wks to allow residual toxins to get removed). So, my plan is to move into the new house with minimal stuff - all new (except for my kids and pets . Although, at this point, I'm debating whether I should move alone first and then gradually introduce kids and pets. The kids part, though, I think I have to do all at the same time, since they are both impacted by the toxins. We may end up with a tent in the backyard for them to do homework since their school books and backpacks have been in the old house. Fortunately, we live in Texas, so that's not quite as bad as it sounds. Also, it's been recommended that I stay on the CSM twice a day after that 2 week period since mold is so u biqutious and I am so sensitive. If all goes well with the move, I should start the procrit in 3-5 weeks. B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2006 Report Share Posted November 5, 2006 Nope, not one! When I first started it was for a short period of time but I can't remember how long. A month or two or three may be?! My mind is a blank at times. Each time I had my HGB checked at the hospital. It didn't go up right away but slowly it did then it leveled off and then rose a bit more. I think the highest was about 15 and then held very steady. After a trial period he took me off and down it went and the fatigue set in once again. SO I went back on it taking only 0.1cc every 5 days or on Fridays and Mondays which was easier for me to remember. It really made all the difference in the world for me. Sue That's the way I am, Sue. I need about ten hours sleep and a nap. I am always tired. Did you have any side effects? Theresa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2006 Report Share Posted November 5, 2006 That's the way I am, Sue. I need about ten hours sleep and a nap. I am always tired. Did you have any side effects? Theresa > > > > > I took Procrit and improved greatly!! I had horrible fatigue which made me > stay in bed most of the day. I slept for at least 10 hrs. a night and many > times needed a nap in the afternoon .Using Procit every 5 days increased my > hemoglobin and the severe pain in my elbows also disappeared along with the > morning stiffness in all my joints!!! > Worked for me!! > Sue > > Are you participating i nthis trial? Have you started and if so do > > you notice any difference?- you notice > > > > I > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 That's great. Hope you can keep getting the procrit whe needed. Theresa > > > > > Nope, not one! When I first started it was for a short period of time but I > can't remember how long. A month or two or three may be?! My mind is a blank > at times. Each time I had my HGB checked at the hospital. It didn't go up > right away but slowly it did then it leveled off and then rose a bit more. I > think the highest was about 15 and then held very steady. After a trial > period he took me off and down it went and the fatigue set in once again. SO I > went back on it taking only 0.1cc every 5 days or on Fridays and Mondays which > was easier for me to remember. It really made all the difference in the world > for me. > > Sue > > That's the way I am, Sue. I need about ten hours sleep and a nap. > I am always tired. Did you have any side effects? > Theresa > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 Great to hear! I tried it for a two week treatment. But since I was getting whacked by spores at the time (and MCS), it didn't bring down my C4a level, in fact, it went up. I've got to get more spore free and stable before trying it again because Dr. Shoemaker insists that C4a levels remain high and constant until treated with Procrit. So I'll probably do another session soon. > > > > > I took Procrit and improved greatly!! I had horrible fatigue which made me > stay in bed most of the day. I slept for at least 10 hrs. a night and many > times needed a nap in the afternoon .Using Procit every 5 days increased my > hemoglobin and the severe pain in my elbows also disappeared along with the > morning stiffness in all my joints!!! > Worked for me!! > Sue > > Are you participating i nthis trial? Have you started and if so do > > you notice any difference?- you notice > > > > I > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2008 Report Share Posted June 24, 2008 Yes it is a treatment for anemia. It helps build red blood cells. But it is temporary, as soon as your hemoglobin goes up you stop it. ____________________________________________________________________________ it is for treating anemia SeaLady DONNA - what exactly is this PROCRIT INJECTIONS - is it a steroid or an immunosuppressive, like steroids or 6MP? or is it just another crohn's med? don't remember ever hearing of it!! Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.