Guest guest Posted February 26, 2004 Report Share Posted February 26, 2004 In a message dated 2/26/2004 11:35:37 AM Pacific Standard Time, bodiedk@... writes: I have a lot of problems with my shoulders, hip, back, neck, ankles and wrists. Me too! Happy to have you join! You will find love and understanding and lots of good information here. We are being a bit goofy with all the tattoo stuff right now ... it is a relief sometimes not to be so serious. But you will find when the need to buckle down arises we are here! Blessings! Debbi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2004 Report Share Posted February 26, 2004 In a message dated 2/26/2004 11:35:37 AM Pacific Standard Time, bodiedk@... writes: I have a lot of problems with my shoulders, hip, back, neck, ankles and wrists. Me too! Happy to have you join! You will find love and understanding and lots of good information here. We are being a bit goofy with all the tattoo stuff right now ... it is a relief sometimes not to be so serious. But you will find when the need to buckle down arises we are here! Blessings! Debbi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2004 Report Share Posted February 26, 2004 Hei Tanja, Supert å se deg her!!!! Kjempekoselig!!!! Tee-hee... Just a tiny bit Norwegian for a Great Dane, he-he (no pun intended, Tanja!!!) How cool, I am not good at playing with the English language at all, but this one was too obvious even for me... It is so great to see you here, Tanja!!! You'll soon learn to love these guys, they are just great!!! Poor you, came here at a time where I make such a mess with my crazy suggestions of what to do while in Buffalo, he-he... I am sure we'll have a great day going off to the pet supermarket to buy stuff for my cutie Yorkie Peanut, Sue's three cute Poodles and other EDSers pooches too... After that it is off to the Tattoo artist for a while of what us EDSers aren't supposed to do, he-he... Actually I started the whole thing by suggesting that Sue's friend the Tattoo artist, maybe could straighten a tattoo I got in Denmark before Christmas. Either the Tattoo artist was a bit too drunk, or my EDS tissues made the edges of the tattoo a bit wobbly... He-he... Great with a fellow Scandinavian here on the CEDA list (even if Canada " adopted " you:) Talk to you later!!!! Aase Marit Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2004 Report Share Posted February 26, 2004 Hei Tanja, Supert å se deg her!!!! Kjempekoselig!!!! Tee-hee... Just a tiny bit Norwegian for a Great Dane, he-he (no pun intended, Tanja!!!) How cool, I am not good at playing with the English language at all, but this one was too obvious even for me... It is so great to see you here, Tanja!!! You'll soon learn to love these guys, they are just great!!! Poor you, came here at a time where I make such a mess with my crazy suggestions of what to do while in Buffalo, he-he... I am sure we'll have a great day going off to the pet supermarket to buy stuff for my cutie Yorkie Peanut, Sue's three cute Poodles and other EDSers pooches too... After that it is off to the Tattoo artist for a while of what us EDSers aren't supposed to do, he-he... Actually I started the whole thing by suggesting that Sue's friend the Tattoo artist, maybe could straighten a tattoo I got in Denmark before Christmas. Either the Tattoo artist was a bit too drunk, or my EDS tissues made the edges of the tattoo a bit wobbly... He-he... Great with a fellow Scandinavian here on the CEDA list (even if Canada " adopted " you:) Talk to you later!!!! Aase Marit Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2004 Report Share Posted February 26, 2004 Hei Tanja, Supert å se deg her!!!! Kjempekoselig!!!! Tee-hee... Just a tiny bit Norwegian for a Great Dane, he-he (no pun intended, Tanja!!!) How cool, I am not good at playing with the English language at all, but this one was too obvious even for me... It is so great to see you here, Tanja!!! You'll soon learn to love these guys, they are just great!!! Poor you, came here at a time where I make such a mess with my crazy suggestions of what to do while in Buffalo, he-he... I am sure we'll have a great day going off to the pet supermarket to buy stuff for my cutie Yorkie Peanut, Sue's three cute Poodles and other EDSers pooches too... After that it is off to the Tattoo artist for a while of what us EDSers aren't supposed to do, he-he... Actually I started the whole thing by suggesting that Sue's friend the Tattoo artist, maybe could straighten a tattoo I got in Denmark before Christmas. Either the Tattoo artist was a bit too drunk, or my EDS tissues made the edges of the tattoo a bit wobbly... He-he... Great with a fellow Scandinavian here on the CEDA list (even if Canada " adopted " you:) Talk to you later!!!! Aase Marit Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2004 Report Share Posted February 26, 2004 Tanja Welcome and I just wanted to let you know that I am from Calgary. I have recently been diagnosed with vascular EDS. I also will not be going to the conference as we have other travel plans for the summer. What doctors have you been to?? If you want to email off list feel free. Betty Introducing myself > Hi every one > > My name is Tanja Nedergaard, I have been in this group now for about 2 weeks. > > Reading all the mails everyday was hard to begin with but I just tjeck my mail at least twice a day. > > Well I'm 24, married, live in Calgary, so if there's anyone from Calgary, I would love to meet You. Because I wont be able to go to the conference in Buffalo. > > I was diagnosed with the EDS III 10 days before I gave birth to my son, He is now 19 months. > My husband is also very flexible, but he does not have any problems so he is probably just hypermobile. > > I have a lot of problems with my shoulders, hip, back, neck, ancles and wrists. > > I am trying to find some medicine to cope with my cronic pain, and I want to get off the Neurontin, it doesn't work for me.Does any of You have suggestions that I can give my doctor. She is a really good doctor, if I have any suggestions she tjecks them out and tells me what she thinks about it/ them. > > And before I go...I just want to say Hi to Aase Marit and Cindy C, thank You for being so sweet to me. > Tanja, Calgary > > > > > > > --------------------------------- > Post your free ad now! Yahoo! Canada Personals > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2004 Report Share Posted February 27, 2004 Dear Tanja, Welcome, welcome :-)) First, may I ask how you pronounce your name? Is it said as Ta - n - ya or Tan - ja? You asked about medicines that help. I know that was the very first question I asked as well :-) Unfortunately there is no straight answer. Everyone is different and reacts differently. Some can do fine on over the counter meds, others with one strong narcotic and others who mees to take multiple types of meds. The best thing would be to get to a pain management doc. But if that can't be done I suggest you see if you can classify your worst pains - are the nerve pain, muscle etc.? If you can not classify them then you probably would do best on an overall pain reducing med. rather than a couple different meds for different pains. Once you find one med that works for you you can always supplement it to help tweak things, like taking a relaxant at night to help sleep etc. As with anything else, start with the lighter stuff and see how you react, working your way to stronger meds if needed. The drug classes used by many are - NSAIDS (Tylenol, Ultram etc.), anti-inflammatories (like celebrex) and opiates (oxycodone, percocet, morphine, fentenyal etc.). Of course there are others like relaxents and nerve pain meds as well. You did not state in your mail if you have tried any opiates. Be aware that there are some who just can not tolerate them. If you have never tried them before the doc should start off with a mild opiate to test. Another important thing - side effects. As long as you can tolerant them give any medication at least 2 weeks before giving up on it. Most times most side effects will lessen and even go away all together and you should get an idea if they are easing up within that 2 week time frame. I hope you can find something that works for you. My Fentenyal patches have been a life saver! Juts in case you don't know - there is also a digest version of the emails. It packs up to 25 emails in one mail and has like a table of contents at the top listing each email's subject and who it is from. This way you can scan the top list and then jump to any emails you'd like to read. If you'd like to try it I believe you just write to Jill and ask to switch to the digest. If you don't like it you can always go back. Again welcome! Sorry for the long post but I was trying to help with your question :-) I wish you luck! Hugs, B. HEDS, New Jersey, USA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2004 Report Share Posted February 27, 2004 Dear Tanja, Welcome, welcome :-)) First, may I ask how you pronounce your name? Is it said as Ta - n - ya or Tan - ja? You asked about medicines that help. I know that was the very first question I asked as well :-) Unfortunately there is no straight answer. Everyone is different and reacts differently. Some can do fine on over the counter meds, others with one strong narcotic and others who mees to take multiple types of meds. The best thing would be to get to a pain management doc. But if that can't be done I suggest you see if you can classify your worst pains - are the nerve pain, muscle etc.? If you can not classify them then you probably would do best on an overall pain reducing med. rather than a couple different meds for different pains. Once you find one med that works for you you can always supplement it to help tweak things, like taking a relaxant at night to help sleep etc. As with anything else, start with the lighter stuff and see how you react, working your way to stronger meds if needed. The drug classes used by many are - NSAIDS (Tylenol, Ultram etc.), anti-inflammatories (like celebrex) and opiates (oxycodone, percocet, morphine, fentenyal etc.). Of course there are others like relaxents and nerve pain meds as well. You did not state in your mail if you have tried any opiates. Be aware that there are some who just can not tolerate them. If you have never tried them before the doc should start off with a mild opiate to test. Another important thing - side effects. As long as you can tolerant them give any medication at least 2 weeks before giving up on it. Most times most side effects will lessen and even go away all together and you should get an idea if they are easing up within that 2 week time frame. I hope you can find something that works for you. My Fentenyal patches have been a life saver! Juts in case you don't know - there is also a digest version of the emails. It packs up to 25 emails in one mail and has like a table of contents at the top listing each email's subject and who it is from. This way you can scan the top list and then jump to any emails you'd like to read. If you'd like to try it I believe you just write to Jill and ask to switch to the digest. If you don't like it you can always go back. Again welcome! Sorry for the long post but I was trying to help with your question :-) I wish you luck! Hugs, B. HEDS, New Jersey, USA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2004 Report Share Posted February 27, 2004 Dear Tanja, Welcome, welcome :-)) First, may I ask how you pronounce your name? Is it said as Ta - n - ya or Tan - ja? You asked about medicines that help. I know that was the very first question I asked as well :-) Unfortunately there is no straight answer. Everyone is different and reacts differently. Some can do fine on over the counter meds, others with one strong narcotic and others who mees to take multiple types of meds. The best thing would be to get to a pain management doc. But if that can't be done I suggest you see if you can classify your worst pains - are the nerve pain, muscle etc.? If you can not classify them then you probably would do best on an overall pain reducing med. rather than a couple different meds for different pains. Once you find one med that works for you you can always supplement it to help tweak things, like taking a relaxant at night to help sleep etc. As with anything else, start with the lighter stuff and see how you react, working your way to stronger meds if needed. The drug classes used by many are - NSAIDS (Tylenol, Ultram etc.), anti-inflammatories (like celebrex) and opiates (oxycodone, percocet, morphine, fentenyal etc.). Of course there are others like relaxents and nerve pain meds as well. You did not state in your mail if you have tried any opiates. Be aware that there are some who just can not tolerate them. If you have never tried them before the doc should start off with a mild opiate to test. Another important thing - side effects. As long as you can tolerant them give any medication at least 2 weeks before giving up on it. Most times most side effects will lessen and even go away all together and you should get an idea if they are easing up within that 2 week time frame. I hope you can find something that works for you. My Fentenyal patches have been a life saver! Juts in case you don't know - there is also a digest version of the emails. It packs up to 25 emails in one mail and has like a table of contents at the top listing each email's subject and who it is from. This way you can scan the top list and then jump to any emails you'd like to read. If you'd like to try it I believe you just write to Jill and ask to switch to the digest. If you don't like it you can always go back. Again welcome! Sorry for the long post but I was trying to help with your question :-) I wish you luck! Hugs, B. HEDS, New Jersey, USA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2005 Report Share Posted March 11, 2005 Welcome! I'm sorry you have reason to be here, but very glad you discovered us. You have certainly come to the right place because there are a number of IgAN women on this list who have successfully given birth to healthy babies (some of which are now grown up!). I'm sure one of them will weigh in and address your questions. You can find more info at www.igan.ca Scroll down about half way through the opening page - there is section entitled " IgA Nephropathy Notebook " which has a link on pregnancy and IgAN. I'm no doc, but I can't imagine mixing pred and pregnancy. Was that your neph or OB-GYN? You were wise to question that. I'd run that one by them again. Cy Introducing myself > > > > Hi there! > > I'm a new member in this group. > > I'm 28 years old woman and I was diagnosed with IgA two years ago > (after various mis-diagnosis and running in different doctors). I'm > coping well physically as my symptoms are still very lame and my > kidneys are functioning well. > > My biggest " problem " is that we were planning pregnancy just before > I got ill and now I finally got the permission to start trying again > (well, that's not the problem ). The problem is that I'm very > scared about all the things that might go wrong (with me or with the > baby). Does anyone have experience on pregnancy with IgA? > > Although the doctors have given me the permission to get pregnant, > I'm a bit doubtful.. What if my symptoms get worse and I can't start > medication because of the baby...? Or what if I'm forced to abort > the pregnancy to be able to start medication (I think I couldn't do > that in no matter what!). > > My doctor said that for example Prednisol is safe for the baby but > it says otherwise in the package. I'm so confused. > > Well, this was supposed to be an introducing mail but it came out to > be like this... Thanks for reading > > > > > > > > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > > To unsubcribe via email, > iga-nephropathy-unsubscribe > Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2005 Report Share Posted March 11, 2005 Welcome! I'm sorry you have reason to be here, but very glad you discovered us. You have certainly come to the right place because there are a number of IgAN women on this list who have successfully given birth to healthy babies (some of which are now grown up!). I'm sure one of them will weigh in and address your questions. You can find more info at www.igan.ca Scroll down about half way through the opening page - there is section entitled " IgA Nephropathy Notebook " which has a link on pregnancy and IgAN. I'm no doc, but I can't imagine mixing pred and pregnancy. Was that your neph or OB-GYN? You were wise to question that. I'd run that one by them again. Cy Introducing myself > > > > Hi there! > > I'm a new member in this group. > > I'm 28 years old woman and I was diagnosed with IgA two years ago > (after various mis-diagnosis and running in different doctors). I'm > coping well physically as my symptoms are still very lame and my > kidneys are functioning well. > > My biggest " problem " is that we were planning pregnancy just before > I got ill and now I finally got the permission to start trying again > (well, that's not the problem ). The problem is that I'm very > scared about all the things that might go wrong (with me or with the > baby). Does anyone have experience on pregnancy with IgA? > > Although the doctors have given me the permission to get pregnant, > I'm a bit doubtful.. What if my symptoms get worse and I can't start > medication because of the baby...? Or what if I'm forced to abort > the pregnancy to be able to start medication (I think I couldn't do > that in no matter what!). > > My doctor said that for example Prednisol is safe for the baby but > it says otherwise in the package. I'm so confused. > > Well, this was supposed to be an introducing mail but it came out to > be like this... Thanks for reading > > > > > > > > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > > To unsubcribe via email, > iga-nephropathy-unsubscribe > Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2005 Report Share Posted March 11, 2005 Welcome! I'm sorry you have reason to be here, but very glad you discovered us. You have certainly come to the right place because there are a number of IgAN women on this list who have successfully given birth to healthy babies (some of which are now grown up!). I'm sure one of them will weigh in and address your questions. You can find more info at www.igan.ca Scroll down about half way through the opening page - there is section entitled " IgA Nephropathy Notebook " which has a link on pregnancy and IgAN. I'm no doc, but I can't imagine mixing pred and pregnancy. Was that your neph or OB-GYN? You were wise to question that. I'd run that one by them again. Cy Introducing myself > > > > Hi there! > > I'm a new member in this group. > > I'm 28 years old woman and I was diagnosed with IgA two years ago > (after various mis-diagnosis and running in different doctors). I'm > coping well physically as my symptoms are still very lame and my > kidneys are functioning well. > > My biggest " problem " is that we were planning pregnancy just before > I got ill and now I finally got the permission to start trying again > (well, that's not the problem ). The problem is that I'm very > scared about all the things that might go wrong (with me or with the > baby). Does anyone have experience on pregnancy with IgA? > > Although the doctors have given me the permission to get pregnant, > I'm a bit doubtful.. What if my symptoms get worse and I can't start > medication because of the baby...? Or what if I'm forced to abort > the pregnancy to be able to start medication (I think I couldn't do > that in no matter what!). > > My doctor said that for example Prednisol is safe for the baby but > it says otherwise in the package. I'm so confused. > > Well, this was supposed to be an introducing mail but it came out to > be like this... Thanks for reading > > > > > > > > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > > To unsubcribe via email, > iga-nephropathy-unsubscribe > Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2005 Report Share Posted March 11, 2005 Thank you, Cy, very much for the helpful link to the pregnancy and IgAN -page. It eased my scares, at least a bit It really was my neph who told that pred is suitable when pregnant, but I really do question that and when I have my appointment next week I sure will ask about that! I would appreciate very much if someone could write about their own experiences when pregnant. Especially if there was something that went wrong and how did you dealt with it (if you find strenght enough to write about it). Essi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2005 Report Share Posted March 11, 2005 Thank you, Cy, very much for the helpful link to the pregnancy and IgAN -page. It eased my scares, at least a bit It really was my neph who told that pred is suitable when pregnant, but I really do question that and when I have my appointment next week I sure will ask about that! I would appreciate very much if someone could write about their own experiences when pregnant. Especially if there was something that went wrong and how did you dealt with it (if you find strenght enough to write about it). Essi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2005 Report Share Posted March 11, 2005 Thanks for posting in ! It is always helpful for others to hear stories like yours. Cy Schorn wrote: Hi, I had 3 successful pregnancies and have IgA. I was never once advised that it would not be safe. But then again I was not taking any medications at all for the IgA. No need, as it was quite early stage. My BP had to be monitored carefully as I did have hypertension and there was a risk for preeclampsia, but I helped to control this through diet (no salt) and exercise. I also had a lot of edema. My feet went from a size 8 to a 9.5 during the pregnancy and got very uncomfortable in the last trimester. For my last two babies I also had a pacemaker and during delivery needed to receive IV antibiotics as a precaution. One of my son's was born with a genetic birth syndrome....totally unrelated to the IgA or any pregnancy complications. All 3 kids are unaffected at this time by IgA, healthy (relatively speaking) and fairly typical. My oldest will be 16 in a few months, the youngest recently turned 6. I wouldn't do it differently. I think however, I would have seriously weighed the risks if I had to be on any prednisone or cellcept or other invasive drug therapy to treat the IgA. Or at least made sure I was fully informed of all the information and potential risks to the fetus. Even now my kidney function is about 60% and I only take ramipril to help maintain my BP and further protect my kidneys. Good luck to you in your decision. S Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2005 Report Share Posted March 11, 2005 Thanks for posting in ! It is always helpful for others to hear stories like yours. Cy Schorn wrote: Hi, I had 3 successful pregnancies and have IgA. I was never once advised that it would not be safe. But then again I was not taking any medications at all for the IgA. No need, as it was quite early stage. My BP had to be monitored carefully as I did have hypertension and there was a risk for preeclampsia, but I helped to control this through diet (no salt) and exercise. I also had a lot of edema. My feet went from a size 8 to a 9.5 during the pregnancy and got very uncomfortable in the last trimester. For my last two babies I also had a pacemaker and during delivery needed to receive IV antibiotics as a precaution. One of my son's was born with a genetic birth syndrome....totally unrelated to the IgA or any pregnancy complications. All 3 kids are unaffected at this time by IgA, healthy (relatively speaking) and fairly typical. My oldest will be 16 in a few months, the youngest recently turned 6. I wouldn't do it differently. I think however, I would have seriously weighed the risks if I had to be on any prednisone or cellcept or other invasive drug therapy to treat the IgA. Or at least made sure I was fully informed of all the information and potential risks to the fetus. Even now my kidney function is about 60% and I only take ramipril to help maintain my BP and further protect my kidneys. Good luck to you in your decision. S Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2005 Report Share Posted March 11, 2005 Thanks for posting in ! It is always helpful for others to hear stories like yours. Cy Schorn wrote: Hi, I had 3 successful pregnancies and have IgA. I was never once advised that it would not be safe. But then again I was not taking any medications at all for the IgA. No need, as it was quite early stage. My BP had to be monitored carefully as I did have hypertension and there was a risk for preeclampsia, but I helped to control this through diet (no salt) and exercise. I also had a lot of edema. My feet went from a size 8 to a 9.5 during the pregnancy and got very uncomfortable in the last trimester. For my last two babies I also had a pacemaker and during delivery needed to receive IV antibiotics as a precaution. One of my son's was born with a genetic birth syndrome....totally unrelated to the IgA or any pregnancy complications. All 3 kids are unaffected at this time by IgA, healthy (relatively speaking) and fairly typical. My oldest will be 16 in a few months, the youngest recently turned 6. I wouldn't do it differently. I think however, I would have seriously weighed the risks if I had to be on any prednisone or cellcept or other invasive drug therapy to treat the IgA. Or at least made sure I was fully informed of all the information and potential risks to the fetus. Even now my kidney function is about 60% and I only take ramipril to help maintain my BP and further protect my kidneys. Good luck to you in your decision. S Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2005 Report Share Posted March 11, 2005 Hi Essiepessi, A very warm welcome to the group. I am sorry you had a need to find your way here. As to pregnancy, Elisabeth's email really laid it out beautifully. I can tell you that I had two pregnancies which resulted in two very healthy baby girls both of which are not grown. I did have lots of edema and high BP with both pregnancies though so it is best to be followed by a high risk OB. Best wishes for starting your family, and welcome again! In a message dated 3/10/2005 10:11:40 P.M. Pacific Standard Time, essipessi76@... writes: Hi there! I'm a new member in this group. I'm 28 years old woman and I was diagnosed with IgA two years ago (after various mis-diagnosis and running in different doctors). I'm coping well physically as my symptoms are still very lame and my kidneys are functioning well. My biggest " problem " is that we were planning pregnancy just before I got ill and now I finally got the permission to start trying again (well, that's not the problem ). The problem is that I'm very scared about all the things that might go wrong (with me or with the baby). Does anyone have experience on pregnancy with IgA? Although the doctors have given me the permission to get pregnant, I'm a bit doubtful.. What if my symptoms get worse and I can't start medication because of the baby...? Or what if I'm forced to abort the pregnancy to be able to start medication (I think I couldn't do that in no matter what!). My doctor said that for example Prednisol is safe for the baby but it says otherwise in the package. I'm so confused. Well, this was supposed to be an introducing mail but it came out to be like this... Thanks for reading Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2005 Report Share Posted March 11, 2005 Hi Essiepessi, A very warm welcome to the group. I am sorry you had a need to find your way here. As to pregnancy, Elisabeth's email really laid it out beautifully. I can tell you that I had two pregnancies which resulted in two very healthy baby girls both of which are not grown. I did have lots of edema and high BP with both pregnancies though so it is best to be followed by a high risk OB. Best wishes for starting your family, and welcome again! In a message dated 3/10/2005 10:11:40 P.M. Pacific Standard Time, essipessi76@... writes: Hi there! I'm a new member in this group. I'm 28 years old woman and I was diagnosed with IgA two years ago (after various mis-diagnosis and running in different doctors). I'm coping well physically as my symptoms are still very lame and my kidneys are functioning well. My biggest " problem " is that we were planning pregnancy just before I got ill and now I finally got the permission to start trying again (well, that's not the problem ). The problem is that I'm very scared about all the things that might go wrong (with me or with the baby). Does anyone have experience on pregnancy with IgA? Although the doctors have given me the permission to get pregnant, I'm a bit doubtful.. What if my symptoms get worse and I can't start medication because of the baby...? Or what if I'm forced to abort the pregnancy to be able to start medication (I think I couldn't do that in no matter what!). My doctor said that for example Prednisol is safe for the baby but it says otherwise in the package. I'm so confused. Well, this was supposed to be an introducing mail but it came out to be like this... Thanks for reading Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2005 Report Share Posted March 11, 2005 Dear Essipessi76, Hi, and welcome. I'm sorry that you got diagnosed with IgAn, but glad that you found us. What are your symptoms right now? What meds are you on, and what is your kidney function? This is what the decision to get pregnant (or not) should be based on. I had two pregnancies with IgAn. I was not diagnosed until after the second child, although they knew I had kidney disease. But they will not do a biopsy while you're pregnant. The main risk during pregnancy, is worsening of the kidney disease. This is because while pregnant, your blood volume goes up by another 50%. This puts an extra load on the kidneys and can accelerate the damage. In my case, I stayed at very good function (normal creatinine), but proteinuria went up quite a bit and I developped high blood pressure- these did not go away after I had the baby. The second risk is to the baby. The risk of preeclampsia goes up four fold for any woman with kidney disease. However, this risk can be managed by being monitored frequently by a high risk OB/GYN. They do frequent visits, frequent BP measurements, keep an eye on your proteinuria, and after 28 weeks lots of ultrasounds of the baby. With a good high risk specialist and your neph working together, the risk is very small. The other good news is that IgAn is usually NOT heriditary- you do not give it to the baby. I had preecalmpsia with my first child only because my OB was too stupid to see that I had signs of kidney disease- proteinuria and swelling, anyway. My protein was always +1 or +2 on the dipstick and I had persistent microscopic blood, but he did nothing, not even a 24 hour urinalysis. With my second pregnancy my BP was always around 140/90, from the start. I was concerned because it had never run that high before. The OB (same doc) told me I was paranoid but finally did a 24 hour clearance. My proteinuria was 2 grams a day. I got referred to the high risk OB/GYN, and fired the other doc. They were very good. I was worried, of course- because I had just gotten diagnosed with the IgAn- but they did an excellent job and I delivered at 39 weeks. No complications whatsoever! It was stressful during the pregnancy, but like I said only because I had just found out that I was sick. Making this decision is full of what-ifs. As far as medications go, the monographs will ALL say that it's risky during pregnancy. That's the drug companies covering their behinds, is all. The high risk OB GYN knows better. There are some BP meds that can be used. Prednisone can also be used. You are under close observation and if there is any problem at all, they will know it. ACE inhibitors or ARB's on the other hand, are out of the question. They are known to cause birth defects. With your kidney function still being very good, I think you can do it if you want to. Just find a good OB/GYN and a good neph, who can work together. Best wishes, -Elisabeth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2005 Report Share Posted March 11, 2005 Dear Essipessi76, Hi, and welcome. I'm sorry that you got diagnosed with IgAn, but glad that you found us. What are your symptoms right now? What meds are you on, and what is your kidney function? This is what the decision to get pregnant (or not) should be based on. I had two pregnancies with IgAn. I was not diagnosed until after the second child, although they knew I had kidney disease. But they will not do a biopsy while you're pregnant. The main risk during pregnancy, is worsening of the kidney disease. This is because while pregnant, your blood volume goes up by another 50%. This puts an extra load on the kidneys and can accelerate the damage. In my case, I stayed at very good function (normal creatinine), but proteinuria went up quite a bit and I developped high blood pressure- these did not go away after I had the baby. The second risk is to the baby. The risk of preeclampsia goes up four fold for any woman with kidney disease. However, this risk can be managed by being monitored frequently by a high risk OB/GYN. They do frequent visits, frequent BP measurements, keep an eye on your proteinuria, and after 28 weeks lots of ultrasounds of the baby. With a good high risk specialist and your neph working together, the risk is very small. The other good news is that IgAn is usually NOT heriditary- you do not give it to the baby. I had preecalmpsia with my first child only because my OB was too stupid to see that I had signs of kidney disease- proteinuria and swelling, anyway. My protein was always +1 or +2 on the dipstick and I had persistent microscopic blood, but he did nothing, not even a 24 hour urinalysis. With my second pregnancy my BP was always around 140/90, from the start. I was concerned because it had never run that high before. The OB (same doc) told me I was paranoid but finally did a 24 hour clearance. My proteinuria was 2 grams a day. I got referred to the high risk OB/GYN, and fired the other doc. They were very good. I was worried, of course- because I had just gotten diagnosed with the IgAn- but they did an excellent job and I delivered at 39 weeks. No complications whatsoever! It was stressful during the pregnancy, but like I said only because I had just found out that I was sick. Making this decision is full of what-ifs. As far as medications go, the monographs will ALL say that it's risky during pregnancy. That's the drug companies covering their behinds, is all. The high risk OB GYN knows better. There are some BP meds that can be used. Prednisone can also be used. You are under close observation and if there is any problem at all, they will know it. ACE inhibitors or ARB's on the other hand, are out of the question. They are known to cause birth defects. With your kidney function still being very good, I think you can do it if you want to. Just find a good OB/GYN and a good neph, who can work together. Best wishes, -Elisabeth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2005 Report Share Posted March 11, 2005 Dear Essipessi76, Hi, and welcome. I'm sorry that you got diagnosed with IgAn, but glad that you found us. What are your symptoms right now? What meds are you on, and what is your kidney function? This is what the decision to get pregnant (or not) should be based on. I had two pregnancies with IgAn. I was not diagnosed until after the second child, although they knew I had kidney disease. But they will not do a biopsy while you're pregnant. The main risk during pregnancy, is worsening of the kidney disease. This is because while pregnant, your blood volume goes up by another 50%. This puts an extra load on the kidneys and can accelerate the damage. In my case, I stayed at very good function (normal creatinine), but proteinuria went up quite a bit and I developped high blood pressure- these did not go away after I had the baby. The second risk is to the baby. The risk of preeclampsia goes up four fold for any woman with kidney disease. However, this risk can be managed by being monitored frequently by a high risk OB/GYN. They do frequent visits, frequent BP measurements, keep an eye on your proteinuria, and after 28 weeks lots of ultrasounds of the baby. With a good high risk specialist and your neph working together, the risk is very small. The other good news is that IgAn is usually NOT heriditary- you do not give it to the baby. I had preecalmpsia with my first child only because my OB was too stupid to see that I had signs of kidney disease- proteinuria and swelling, anyway. My protein was always +1 or +2 on the dipstick and I had persistent microscopic blood, but he did nothing, not even a 24 hour urinalysis. With my second pregnancy my BP was always around 140/90, from the start. I was concerned because it had never run that high before. The OB (same doc) told me I was paranoid but finally did a 24 hour clearance. My proteinuria was 2 grams a day. I got referred to the high risk OB/GYN, and fired the other doc. They were very good. I was worried, of course- because I had just gotten diagnosed with the IgAn- but they did an excellent job and I delivered at 39 weeks. No complications whatsoever! It was stressful during the pregnancy, but like I said only because I had just found out that I was sick. Making this decision is full of what-ifs. As far as medications go, the monographs will ALL say that it's risky during pregnancy. That's the drug companies covering their behinds, is all. The high risk OB GYN knows better. There are some BP meds that can be used. Prednisone can also be used. You are under close observation and if there is any problem at all, they will know it. ACE inhibitors or ARB's on the other hand, are out of the question. They are known to cause birth defects. With your kidney function still being very good, I think you can do it if you want to. Just find a good OB/GYN and a good neph, who can work together. Best wishes, -Elisabeth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2005 Report Share Posted March 11, 2005 If Essi. Welcome to the group. You have received some replies already, and I'm sure there will be more. I haven't had a baby, obviously, but, this is a subject that we get here often. You didn't give much information about your actual kidney function and your situation with regards to proteinuria. This isn't a new subject to nephrologists, so, if yours says having a child is Ok, I can only assume that your kidney situation is relatively stable, and it should be Ok, as it has been for many women. There is always the list of risks as I outlined on www.igan.ca, but, you have to balance that against your desire to have children. So far, after about 5 years of operation, this group hasn't heard about too many bad pregnancy stories. I can't recall any. On the other hand, I do know someone with IgAN who went ahead with pregnancy against the nephrologist's advice due to more advanced renal failure. This woman had the baby successfully, but it seems to have accelerated her IgAN and she is now on dialysis. She would do it again, because she wanted the baby. Now, from what you said in your introductory message, it doesn't sound like you are in advanced renal failure. By the way, there are many things said on medication inserts or packages. They are often very generic warnings, but they may not always apply to specific cases. If in doubt, you should probably ask your doctor again. You may not even need to be on prednisone, I don't know. It depends on your level of proteinuria. Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 We use 1-2-3 Magic on our 2 year old and 4 year old. It works really well if you use it correctly. I would ask what they do at school too. Be consistant and don't give in. Alot of times it is really important that she gets no reaction from you when she does insane things. Welcome to the group!!!! Tawnya Introducing Myself Hi, my name is and my 4 year old daughter was diagnosed very late (at 3) of a hearing impairment. She has severe loss in her right ear and moderate loss in her left. She is only on about a 2 year old level as far as language and speech, although it is improving daily. Her pediatrician was convinced (or just convinced us) that she could hear and was just a late talker. It also turned out she was epileptic. My daughter is in a great program for hearing impaired preschoolers and I love it. However, it has been hard to cope with and I have had a hard time discipling her as well as potty training (although she is potty trained at school completely). She is out of control a lot of the time, but only for me and her father. Can anyone help me out? Anything that helped you with your HOH kids? I need any resources I can get. There hasn't been much help here in Knoxville other than handing us a pair of hearing aids and setting her up with a hearing impaired preschool. Thanks!!! All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 We use 1-2-3 Magic on our 2 year old and 4 year old. It works really well if you use it correctly. I would ask what they do at school too. Be consistant and don't give in. Alot of times it is really important that she gets no reaction from you when she does insane things. Welcome to the group!!!! Tawnya Introducing Myself Hi, my name is and my 4 year old daughter was diagnosed very late (at 3) of a hearing impairment. She has severe loss in her right ear and moderate loss in her left. She is only on about a 2 year old level as far as language and speech, although it is improving daily. Her pediatrician was convinced (or just convinced us) that she could hear and was just a late talker. It also turned out she was epileptic. My daughter is in a great program for hearing impaired preschoolers and I love it. However, it has been hard to cope with and I have had a hard time discipling her as well as potty training (although she is potty trained at school completely). She is out of control a lot of the time, but only for me and her father. Can anyone help me out? Anything that helped you with your HOH kids? I need any resources I can get. There hasn't been much help here in Knoxville other than handing us a pair of hearing aids and setting her up with a hearing impaired preschool. Thanks!!! All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. Quote Link to comment Share on other sites More sharing options...
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