Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Tammie... Every person is different in how they react to treatment. I didn't have any problems until 6-8 weeks ago (and I have 2 weeks to go). Both my platelets and rbc dropped. Platelets don't make you feel bad, but they are your clotting factor so it's important they don't get too low. Pegasys says at 50,000 to go to a half dose of interferon...at 25,000 go off treatment. RBC drops are the ribavarinn...and it's not a fun time. Fatigue, breathlessness and rapid heart rate if you exert yourself. And of course your thyroid. But it is very easily controlled with synthroid. So if you start feeling a lot of fatigue, get your TSH and RBC checked so you can stay on top of it. You are doing great and we're here to hold your hand... Tatezi update on first shot I HAVE SURVIVED THE WHOLE DAY!!!!!!!!!! LOLOLOLOL I didn't even feel the shot. Very easy...no problem at all. I have to admit that I am feeling a little yucky, but only a little. I will see what happens after I take my next pills tonight. When do you start noticing any sides? Is there different time lengths depending on the person? or does it seem that after a few weeks things start to happen? Thanks for being there and holding my hand. <><TammieD><> a.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Tammie... Every person is different in how they react to treatment. I didn't have any problems until 6-8 weeks ago (and I have 2 weeks to go). Both my platelets and rbc dropped. Platelets don't make you feel bad, but they are your clotting factor so it's important they don't get too low. Pegasys says at 50,000 to go to a half dose of interferon...at 25,000 go off treatment. RBC drops are the ribavarinn...and it's not a fun time. Fatigue, breathlessness and rapid heart rate if you exert yourself. And of course your thyroid. But it is very easily controlled with synthroid. So if you start feeling a lot of fatigue, get your TSH and RBC checked so you can stay on top of it. You are doing great and we're here to hold your hand... Tatezi update on first shot I HAVE SURVIVED THE WHOLE DAY!!!!!!!!!! LOLOLOLOL I didn't even feel the shot. Very easy...no problem at all. I have to admit that I am feeling a little yucky, but only a little. I will see what happens after I take my next pills tonight. When do you start noticing any sides? Is there different time lengths depending on the person? or does it seem that after a few weeks things start to happen? Thanks for being there and holding my hand. <><TammieD><> a.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Way to go Tammie!! I know you're a happy camper to be feeling OK (after anticipating the worst). I had no sides at all (after the first night) for the three weeks I was on treatment except for a rather dramatic drop in wbcs, rbcs, and platelets (which is expected and which can be treated if the counts begin to fall too low). My GI doc advised me that mine dropped more rapidly than anticipated. That, he said, kind of concerned him with respect to " next time " . (He indicated that most patient's counts don't begin dropping that soon). I had to come off treatment in order to get my wbcs back up so the peridontist could treat my underlying peridontal disease, which " came busting loose " when those wbcs dropped. You may be one who goes through your course of treatment with little or no sides, but be prepared -- it's not likely (but it's possible!) Some on treatment can continue working while on treatment; some cannot. The more commonly reported side effects (the milder ones) are fatigue, depression, insomnia, headache, feeling generally ill. One side effect that gives docs much concern is the psychiatric events associated with treatment (severe depression, agitation, psychosis, suicidal ideation and suicide attempt). Both GI docs I consulted prior to beginning treatment (while being worked up after diagnosis) warned me that -- if I did decide to treat -- treatment is no fun at all and can be pure hell for some. ( " pure hell " was the phrase one GI doc used to describe treatment). Some might think his advising me in these terms was inappropriate or intended to scare me. I don't think so -- I think he was just being quite frank about what treatment can do to some. Which combo are you on? Did you get the patient starter kits (the nice little " gift set " and goodies from the the drug manufacturer, i.e. from Roche or Schering Plough. I was enrolled in a program (through Roche -- makers of Pegasys and Copegus) called " Peggasist " . They gave me reams of information about treatment, about what to expect, about what to do to minimize side effects, and they also had a 24 hour hot line for the patient to call a nurse if the patient had a concern. A nurse from this program also called the patient every three months to collect information from the patient to see how they were doing on the treatment and to gather information on any side effects the patient was reporting. Treatment affects everyone differently. There are several places on the internet you can go to find how to best manage sides. You will find so much information, you won't know what to do with it all -- lol. This is from Roche's link http://www.pegasys.com/why/managing.asp Does PEGASYS have side effects?There is no way to know exactly how PEGASYS may affect you until you take it. So, be sure to talk with your doctor or nurse if you have questions about side effects. Your doctor or nurse will help you understand what you can expect from therapy, as well as offer advice how to deal with any side effects that may occur. Sometimes simple steps—such as drinking plenty of water every day—may help some patients feel better.The most serious possible side effects of treatment with PEGASYS include mental health problems such as irritability, depression, anxiety, and suicidal behavior (including thoughts about suicide and suicide attempts); blood problems such as a drop in the number of white blood cells and platelets, which can lead to increased risk for infections or bleeding; heart problems, body organ problems, which can result in autoimmune disease (the body's own immune system attacks itself) such as psoriasis (skin turns reddish and scaly) and systemic lupus erythematosus (skin lesions).The most common possible side effects of PEGASYS treatment include flu-like symptoms such as fever, chills, muscle aches, joint pain and headaches; difficulty in controlling blood sugar levels, which may lead to diabetes; and skin reactions such as rash, dry or itchy skin, temporary hair loss and redness and swelling at the site of injection. Other common side effects include extreme fatigue, upset stomach and trouble sleeping.PEGASYS is often taken in combination with COPEGUS. In clinical trials, COPEGUS also caused some side effects. COPEGUS therapy may cause birth defects and/or death of an unborn child. Extreme care must be taken to avoid pregnancy during therapy and for 6 months after completion of treatment in female patients and in female partners of male patients. Female patients and female partners of male patients must have a negative result from a pregnancy test immediately before starting treatment. Once therapy begins, negative pregnancy tests must be obtained each month during therapy and for 6 months after stopping therapy. Both partners must begin using two forms of effective birth control at least 1 month before starting treatment and continue until 6 months after completing treatment. For female patients, at least one of the two separate methods of birth control must be a primary method of birth control. For male patients, a condom with spermicide must be used as one of the two effective methods of birth control; the second method must be a primary form of birth control.COPEGUS therapy may cause your red blood cell count to decrease (anemia). This may cause a worsening of heart (cardiovascular) or circulatory problems. Some patients may experience chest pain and very rarely a heart attack. Patients with a history of heart disease could be at greatest risk. Talk with your healthcare provider before taking COPEGUS if you have or have ever had any heart problems. Your healthcare provider will check your red blood cell count before you start therapy and often during the first month of treatment. These tests may be done more often if you have heart problems.If you are taking PEGASYS alone or in combination with COPEGUS, you should call your healthcare provider immediately if you develop any of these symptoms: New or worsening mental health problems such as depression or thinking about ending your life, trouble breathing, chest pain, change in your vision, unusual bleeding or bruising, high fever or worsening of psoriasis.If you or your partner becomes pregnant during or within 6 months after treatment with COPEGUS, immediately report the pregnancy to your doctor. You or your doctor should also call Roche at 1-800-526-6367.The most common adverse events associated with COPEGUS are nausea and appetite loss, rash and itching, trouble breathing, and cough. Pregnancy and Family Planning.In this section, you'll find information on: How PEGASYS works The effectiveness of PEGASYS Managing side effects How to take PEGASYS and COPEGUS Is PEGASYS right for me? Important Safety InformationAlpha interferons, including PEGASYS (Peginterferon alfa-2a), may cause or aggravate fatal or life-threatening neuropsychiatric, autoimmune, ischemic, and infectious disorders. Patients should be monitored closely with periodic clinical and laboratory evaluations. Therapy should be withdrawn in patients with persistently severe or worsening signs or symptoms of these conditions. In many, but not all cases, these disorders resolve after stopping PEGASYS therapy (see CONTRAINDICATIONS, WARNINGS, PRECAUTIONS and ADVERSE REACTIONS in complete product information).Use with Ribavirin. Ribavirin, including COPEGUS®, may cause birth defects and/or death of the fetus. Extreme care must be taken to avoid pregnancy in female patients and in female partners of male patients. Ribavirin causes hemolytic anemia. The anemia associated with ribavirin therapy may result in a worsening of cardiac disease. Ribavirin is genotoxic and mutagenic and should be considered a potential carcinogen (see CONTRAINDICATIONS, WARNINGS, PRECAUTIONS and ADVERSE REACTIONS in complete product information). ======================================== This is from schering plough's link. http://www.pegintron.com/index_main.html I couldn't paste any of it here, so I hope you can pull it up. ================================================ While it's good to know that all of these things can happen, it's also good to know (as someone here advised me) " keep it in perspective " . As you can see, almost anything can happen to you while you're on treatment -- ranging from mild to severe to awfully severe. Hopefully -- no matter what sides you experience -- the docs will be able to manage them. Hang in there! In a message dated 6/16/2004 8:05:09 PM Eastern Standard Time, t1d1r1d1@... writes: > I HAVE SURVIVED THE WHOLE DAY!!!!!!!!!! LOLOLOLOL > I didn't even feel the shot. Very easy...no problem at all. > I have to admit that I am feeling a little yucky, but only a little. > I will see what happens after I take my next pills tonight. > When do you start noticing any sides? Is there different time lengths > depending on the person? or does it seem that after a few weeks > things start to happen? > Thanks for being there and holding my hand. > <><TammieD><> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Way to go Tammie!! I know you're a happy camper to be feeling OK (after anticipating the worst). I had no sides at all (after the first night) for the three weeks I was on treatment except for a rather dramatic drop in wbcs, rbcs, and platelets (which is expected and which can be treated if the counts begin to fall too low). My GI doc advised me that mine dropped more rapidly than anticipated. That, he said, kind of concerned him with respect to " next time " . (He indicated that most patient's counts don't begin dropping that soon). I had to come off treatment in order to get my wbcs back up so the peridontist could treat my underlying peridontal disease, which " came busting loose " when those wbcs dropped. You may be one who goes through your course of treatment with little or no sides, but be prepared -- it's not likely (but it's possible!) Some on treatment can continue working while on treatment; some cannot. The more commonly reported side effects (the milder ones) are fatigue, depression, insomnia, headache, feeling generally ill. One side effect that gives docs much concern is the psychiatric events associated with treatment (severe depression, agitation, psychosis, suicidal ideation and suicide attempt). Both GI docs I consulted prior to beginning treatment (while being worked up after diagnosis) warned me that -- if I did decide to treat -- treatment is no fun at all and can be pure hell for some. ( " pure hell " was the phrase one GI doc used to describe treatment). Some might think his advising me in these terms was inappropriate or intended to scare me. I don't think so -- I think he was just being quite frank about what treatment can do to some. Which combo are you on? Did you get the patient starter kits (the nice little " gift set " and goodies from the the drug manufacturer, i.e. from Roche or Schering Plough. I was enrolled in a program (through Roche -- makers of Pegasys and Copegus) called " Peggasist " . They gave me reams of information about treatment, about what to expect, about what to do to minimize side effects, and they also had a 24 hour hot line for the patient to call a nurse if the patient had a concern. A nurse from this program also called the patient every three months to collect information from the patient to see how they were doing on the treatment and to gather information on any side effects the patient was reporting. Treatment affects everyone differently. There are several places on the internet you can go to find how to best manage sides. You will find so much information, you won't know what to do with it all -- lol. This is from Roche's link http://www.pegasys.com/why/managing.asp Does PEGASYS have side effects?There is no way to know exactly how PEGASYS may affect you until you take it. So, be sure to talk with your doctor or nurse if you have questions about side effects. Your doctor or nurse will help you understand what you can expect from therapy, as well as offer advice how to deal with any side effects that may occur. Sometimes simple steps—such as drinking plenty of water every day—may help some patients feel better.The most serious possible side effects of treatment with PEGASYS include mental health problems such as irritability, depression, anxiety, and suicidal behavior (including thoughts about suicide and suicide attempts); blood problems such as a drop in the number of white blood cells and platelets, which can lead to increased risk for infections or bleeding; heart problems, body organ problems, which can result in autoimmune disease (the body's own immune system attacks itself) such as psoriasis (skin turns reddish and scaly) and systemic lupus erythematosus (skin lesions).The most common possible side effects of PEGASYS treatment include flu-like symptoms such as fever, chills, muscle aches, joint pain and headaches; difficulty in controlling blood sugar levels, which may lead to diabetes; and skin reactions such as rash, dry or itchy skin, temporary hair loss and redness and swelling at the site of injection. Other common side effects include extreme fatigue, upset stomach and trouble sleeping.PEGASYS is often taken in combination with COPEGUS. In clinical trials, COPEGUS also caused some side effects. COPEGUS therapy may cause birth defects and/or death of an unborn child. Extreme care must be taken to avoid pregnancy during therapy and for 6 months after completion of treatment in female patients and in female partners of male patients. Female patients and female partners of male patients must have a negative result from a pregnancy test immediately before starting treatment. Once therapy begins, negative pregnancy tests must be obtained each month during therapy and for 6 months after stopping therapy. Both partners must begin using two forms of effective birth control at least 1 month before starting treatment and continue until 6 months after completing treatment. For female patients, at least one of the two separate methods of birth control must be a primary method of birth control. For male patients, a condom with spermicide must be used as one of the two effective methods of birth control; the second method must be a primary form of birth control.COPEGUS therapy may cause your red blood cell count to decrease (anemia). This may cause a worsening of heart (cardiovascular) or circulatory problems. Some patients may experience chest pain and very rarely a heart attack. Patients with a history of heart disease could be at greatest risk. Talk with your healthcare provider before taking COPEGUS if you have or have ever had any heart problems. Your healthcare provider will check your red blood cell count before you start therapy and often during the first month of treatment. These tests may be done more often if you have heart problems.If you are taking PEGASYS alone or in combination with COPEGUS, you should call your healthcare provider immediately if you develop any of these symptoms: New or worsening mental health problems such as depression or thinking about ending your life, trouble breathing, chest pain, change in your vision, unusual bleeding or bruising, high fever or worsening of psoriasis.If you or your partner becomes pregnant during or within 6 months after treatment with COPEGUS, immediately report the pregnancy to your doctor. You or your doctor should also call Roche at 1-800-526-6367.The most common adverse events associated with COPEGUS are nausea and appetite loss, rash and itching, trouble breathing, and cough. Pregnancy and Family Planning.In this section, you'll find information on: How PEGASYS works The effectiveness of PEGASYS Managing side effects How to take PEGASYS and COPEGUS Is PEGASYS right for me? Important Safety InformationAlpha interferons, including PEGASYS (Peginterferon alfa-2a), may cause or aggravate fatal or life-threatening neuropsychiatric, autoimmune, ischemic, and infectious disorders. Patients should be monitored closely with periodic clinical and laboratory evaluations. Therapy should be withdrawn in patients with persistently severe or worsening signs or symptoms of these conditions. In many, but not all cases, these disorders resolve after stopping PEGASYS therapy (see CONTRAINDICATIONS, WARNINGS, PRECAUTIONS and ADVERSE REACTIONS in complete product information).Use with Ribavirin. Ribavirin, including COPEGUS®, may cause birth defects and/or death of the fetus. Extreme care must be taken to avoid pregnancy in female patients and in female partners of male patients. Ribavirin causes hemolytic anemia. The anemia associated with ribavirin therapy may result in a worsening of cardiac disease. Ribavirin is genotoxic and mutagenic and should be considered a potential carcinogen (see CONTRAINDICATIONS, WARNINGS, PRECAUTIONS and ADVERSE REACTIONS in complete product information). ======================================== This is from schering plough's link. http://www.pegintron.com/index_main.html I couldn't paste any of it here, so I hope you can pull it up. ================================================ While it's good to know that all of these things can happen, it's also good to know (as someone here advised me) " keep it in perspective " . As you can see, almost anything can happen to you while you're on treatment -- ranging from mild to severe to awfully severe. Hopefully -- no matter what sides you experience -- the docs will be able to manage them. Hang in there! In a message dated 6/16/2004 8:05:09 PM Eastern Standard Time, t1d1r1d1@... writes: > I HAVE SURVIVED THE WHOLE DAY!!!!!!!!!! LOLOLOLOL > I didn't even feel the shot. Very easy...no problem at all. > I have to admit that I am feeling a little yucky, but only a little. > I will see what happens after I take my next pills tonight. > When do you start noticing any sides? Is there different time lengths > depending on the person? or does it seem that after a few weeks > things start to happen? > Thanks for being there and holding my hand. > <><TammieD><> > Quote Link to comment Share on other sites More sharing options...
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