Guest guest Posted August 28, 2009 Report Share Posted August 28, 2009 Hi Debbie, I totally understand your situation! I think this is an example yet again how everyone is different! But in general I believe that supplementing Iron is not the way to go. For you this was not the case. I had chronic low iron and bad anemia for years.. I had an iron allergy/intolerance to every supplement/prescription under the sun.. had Iron IV's- had anaphylaxsis to one and the other type they used on me they gave me so much benadryl that I remember not even being able to control my eye lids- basically like paralyzed me with the benadryl. I needed transfusions etc. Iron always made me very sick. This was years ago though.. and they have much safer types today. Thank goodness. Sally talks about a type she has used with her son. I personally feel after reading data out there that if one can avoid iron they should. I feel lucky in one sense that my reaction was so stevere to Iron. With fanatical adherence my Anemia and Iron have stabilized on the SCD. It has been the only thing to turn *my* situation around besides bandaiding with transfusions. I remember the days it got so bad I needed to get a bone marrow test to rule out all kinds of crazy stuff. So, we are all different. I am glad you found an Iron that helps you. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2009 Report Share Posted August 28, 2009 Two stories stand out in my mind and it's the only reason I respond to 'medicine or iron' posts. There was a mom who posted on her 9yo daughter on SCD. She said after being scoped the doctor put her on Pentasa. She started smiling and laughing after that so she must have felt that much better. I think I remember she posted if she hadn't been on SCD, it could have been a lot worse for that kid. The other is a story my doctor told me about a woman who refused blood and medicine for religious reasons. She died at 1.5 hemoglobin. I've read where Elaine says if it's prescribed then follow doctor's instructions. For some people it may not help, it may make it worse but most of us start pretty ill in this group. Why let a problem go and like you said 'have to bandaid' a problem then with transfusions? We are all different but then I've read other people's stories (thinking I must be some freak of nature) and there story could be mine. I've always been slightly anemic also but I don't think we are talking slightly anemic, are we? We're talking serious 'do something now' type of problem. And this is the only thing wrong with this group--we aren't doctors. And her doctor says she needs iron. See ya, Debbie 40 cd Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2009 Report Share Posted August 28, 2009 Two stories stand out in my mind and it's the only reason I respond to 'medicine or iron' posts. There was a mom who posted on her 9yo daughter on SCD. She said after being scoped the doctor put her on Pentasa. She started smiling and laughing after that so she must have felt that much better. I think I remember she posted if she hadn't been on SCD, it could have been a lot worse for that kid. The other is a story my doctor told me about a woman who refused blood and medicine for religious reasons. She died at 1.5 hemoglobin. I've read where Elaine says if it's prescribed then follow doctor's instructions. For some people it may not help, it may make it worse but most of us start pretty ill in this group. Why let a problem go and like you said 'have to bandaid' a problem then with transfusions? We are all different but then I've read other people's stories (thinking I must be some freak of nature) and there story could be mine. I've always been slightly anemic also but I don't think we are talking slightly anemic, are we? We're talking serious 'do something now' type of problem. And this is the only thing wrong with this group--we aren't doctors. And her doctor says she needs iron. See ya, Debbie 40 cd Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2009 Report Share Posted August 28, 2009 Two stories stand out in my mind and it's the only reason I respond to 'medicine or iron' posts. There was a mom who posted on her 9yo daughter on SCD. She said after being scoped the doctor put her on Pentasa. She started smiling and laughing after that so she must have felt that much better. I think I remember she posted if she hadn't been on SCD, it could have been a lot worse for that kid. The other is a story my doctor told me about a woman who refused blood and medicine for religious reasons. She died at 1.5 hemoglobin. I've read where Elaine says if it's prescribed then follow doctor's instructions. For some people it may not help, it may make it worse but most of us start pretty ill in this group. Why let a problem go and like you said 'have to bandaid' a problem then with transfusions? We are all different but then I've read other people's stories (thinking I must be some freak of nature) and there story could be mine. I've always been slightly anemic also but I don't think we are talking slightly anemic, are we? We're talking serious 'do something now' type of problem. And this is the only thing wrong with this group--we aren't doctors. And her doctor says she needs iron. See ya, Debbie 40 cd Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2009 Report Share Posted August 28, 2009 Sure Debbie.. And I respect this. Yes, I was not slightly Anemic.. I was do it now kind of situation too.. Chronic for years and at points very dangerous. And yet- The SCD helped me stabilize this without Iron and transfusions. So, what I am saying is there are many stories to consider. As always follow gut instinct and listen to your doctor. Not everyone is in my situation.. not everyone is in your situation. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2009 Report Share Posted August 28, 2009 Hi Debbie, You are absolutely right what you have said. When you have a ferritin level of 1 you need to do something about it. I myself have had to have iron transfusions and they are scary. I currently take a iron pill and when I get to the ferritin level I need hopefully I can stop. Sky To: BTVC-SCD Sent: Friday, 28 August, 2009 9:49:02 PMSubject: Re: Re: Iron-again Two stories stand out in my mind and it's the only reason I respond to 'medicine or iron' posts. There was a mom who posted on her 9yo daughter on SCD. She said after being scoped the doctor put her on Pentasa. She started smiling and laughing after that so she must have felt that much better. I think I remember she posted if she hadn't been on SCD, it could have been a lot worse for that kid. The other is a story my doctor told me about a woman who refused blood and medicine for religious reasons. She died at 1.5 hemoglobin. I've read where Elaine says if it's prescribed then follow doctor's instructions. For some people it may not help, it may make it worse but most of us start pretty ill in this group. Why let a problem go and like you said 'have to bandaid' a problem then with transfusions? We are all different but then I've read other people's stories (thinking I must be some freak of nature) and there story could be mine. I've always been slightly anemic also but I don't think we are talking slightly anemic, are we? We're talking serious 'do something now' type of problem. And this is the only thing wrong with this group--we aren't doctors. And her doctor says she needs iron. See ya, Debbie 40 cd Find local businesses and services in your area with Yahoo!7 Local. Get started. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2009 Report Share Posted August 28, 2009 Hi Debbie, You are absolutely right what you have said. When you have a ferritin level of 1 you need to do something about it. I myself have had to have iron transfusions and they are scary. I currently take a iron pill and when I get to the ferritin level I need hopefully I can stop. Sky To: BTVC-SCD Sent: Friday, 28 August, 2009 9:49:02 PMSubject: Re: Re: Iron-again Two stories stand out in my mind and it's the only reason I respond to 'medicine or iron' posts. There was a mom who posted on her 9yo daughter on SCD. She said after being scoped the doctor put her on Pentasa. She started smiling and laughing after that so she must have felt that much better. I think I remember she posted if she hadn't been on SCD, it could have been a lot worse for that kid. The other is a story my doctor told me about a woman who refused blood and medicine for religious reasons. She died at 1.5 hemoglobin. I've read where Elaine says if it's prescribed then follow doctor's instructions. For some people it may not help, it may make it worse but most of us start pretty ill in this group. Why let a problem go and like you said 'have to bandaid' a problem then with transfusions? We are all different but then I've read other people's stories (thinking I must be some freak of nature) and there story could be mine. I've always been slightly anemic also but I don't think we are talking slightly anemic, are we? We're talking serious 'do something now' type of problem. And this is the only thing wrong with this group--we aren't doctors. And her doctor says she needs iron. See ya, Debbie 40 cd Find local businesses and services in your area with Yahoo!7 Local. Get started. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2009 Report Share Posted August 28, 2009 Hi Debbie, You are absolutely right what you have said. When you have a ferritin level of 1 you need to do something about it. I myself have had to have iron transfusions and they are scary. I currently take a iron pill and when I get to the ferritin level I need hopefully I can stop. Sky To: BTVC-SCD Sent: Friday, 28 August, 2009 9:49:02 PMSubject: Re: Re: Iron-again Two stories stand out in my mind and it's the only reason I respond to 'medicine or iron' posts. There was a mom who posted on her 9yo daughter on SCD. She said after being scoped the doctor put her on Pentasa. She started smiling and laughing after that so she must have felt that much better. I think I remember she posted if she hadn't been on SCD, it could have been a lot worse for that kid. The other is a story my doctor told me about a woman who refused blood and medicine for religious reasons. She died at 1.5 hemoglobin. I've read where Elaine says if it's prescribed then follow doctor's instructions. For some people it may not help, it may make it worse but most of us start pretty ill in this group. Why let a problem go and like you said 'have to bandaid' a problem then with transfusions? We are all different but then I've read other people's stories (thinking I must be some freak of nature) and there story could be mine. I've always been slightly anemic also but I don't think we are talking slightly anemic, are we? We're talking serious 'do something now' type of problem. And this is the only thing wrong with this group--we aren't doctors. And her doctor says she needs iron. See ya, Debbie 40 cd Find local businesses and services in your area with Yahoo!7 Local. Get started. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2009 Report Share Posted August 28, 2009 Have you heard bad things about iron infusions. I went for eightand that didn't help so he ordered eight more. That sounds like alot of iron!I am getting ferlecit. Any help would be appreciated.ThanksLiz MattesonSCD 13 yearsTo: BTVC-SCD Sent: Thursday, August 27, 2009 1:03:52 PMSubject: Re: Iron-again In my peri-menopausal years I bled so much I was very short of iron and my doctor added iron to my regular weekly B12 shots. As small as they can grind it, the iron still was like little rocks and boy could I feel them going in! DH, who gives me my shots, said it was hard to push, too. However, as an intra-muscular shot, I had no gut troubles at all with them and of course this would also bypass any infusion problems. It's been almost 14 years since I needed these so I don't remember what type of iron it was, but it sure helped keep my test levels up with no other problems except sometimes a little bruising. (Of course I was happy when I no longer needed them, too!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2009 Report Share Posted August 28, 2009 Have you heard bad things about iron infusions. I went for eightand that didn't help so he ordered eight more. That sounds like alot of iron!I am getting ferlecit. Any help would be appreciated.ThanksLiz MattesonSCD 13 yearsTo: BTVC-SCD Sent: Thursday, August 27, 2009 1:03:52 PMSubject: Re: Iron-again In my peri-menopausal years I bled so much I was very short of iron and my doctor added iron to my regular weekly B12 shots. As small as they can grind it, the iron still was like little rocks and boy could I feel them going in! DH, who gives me my shots, said it was hard to push, too. However, as an intra-muscular shot, I had no gut troubles at all with them and of course this would also bypass any infusion problems. It's been almost 14 years since I needed these so I don't remember what type of iron it was, but it sure helped keep my test levels up with no other problems except sometimes a little bruising. (Of course I was happy when I no longer needed them, too!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2009 Report Share Posted August 28, 2009 Have you heard bad things about iron infusions. I went for eightand that didn't help so he ordered eight more. That sounds like alot of iron!I am getting ferlecit. Any help would be appreciated.ThanksLiz MattesonSCD 13 yearsTo: BTVC-SCD Sent: Thursday, August 27, 2009 1:03:52 PMSubject: Re: Iron-again In my peri-menopausal years I bled so much I was very short of iron and my doctor added iron to my regular weekly B12 shots. As small as they can grind it, the iron still was like little rocks and boy could I feel them going in! DH, who gives me my shots, said it was hard to push, too. However, as an intra-muscular shot, I had no gut troubles at all with them and of course this would also bypass any infusion problems. It's been almost 14 years since I needed these so I don't remember what type of iron it was, but it sure helped keep my test levels up with no other problems except sometimes a little bruising. (Of course I was happy when I no longer needed them, too!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2009 Report Share Posted August 28, 2009 I'm sorry Liz, I have no familiarity with infusions for iron, just the shots in the rear. But I'm sure someone else will be able to answer you on this. Have you heard bad things about iron infusions. I went for eight and that didn't help so he ordered eight more. That sounds like alot of iron! I am getting ferlecit. Any help would be appreciated. Thanks Liz Matteson SCD 13 years ________________________________ From: My-Stitches <My-Stitches@... > To: BTVC-SCD Sent: Thursday, August 27, 2009 1:03:52 PM Subject: Re: Iron-again In my peri-menopausal years I bled so much I was very short of iron and my doctor added iron to my regular weekly B12 shots. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2009 Report Share Posted August 28, 2009 I'm sorry Liz, I have no familiarity with infusions for iron, just the shots in the rear. But I'm sure someone else will be able to answer you on this. Have you heard bad things about iron infusions. I went for eight and that didn't help so he ordered eight more. That sounds like alot of iron! I am getting ferlecit. Any help would be appreciated. Thanks Liz Matteson SCD 13 years ________________________________ From: My-Stitches <My-Stitches@... > To: BTVC-SCD Sent: Thursday, August 27, 2009 1:03:52 PM Subject: Re: Iron-again In my peri-menopausal years I bled so much I was very short of iron and my doctor added iron to my regular weekly B12 shots. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2009 Report Share Posted August 28, 2009 I'm sorry Liz, I have no familiarity with infusions for iron, just the shots in the rear. But I'm sure someone else will be able to answer you on this. Have you heard bad things about iron infusions. I went for eight and that didn't help so he ordered eight more. That sounds like alot of iron! I am getting ferlecit. Any help would be appreciated. Thanks Liz Matteson SCD 13 years ________________________________ From: My-Stitches <My-Stitches@... > To: BTVC-SCD Sent: Thursday, August 27, 2009 1:03:52 PM Subject: Re: Iron-again In my peri-menopausal years I bled so much I was very short of iron and my doctor added iron to my regular weekly B12 shots. Quote Link to comment Share on other sites More sharing options...
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