Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 Hi Tatjana and welcome to you! There are so many people who had the onset after having children and some even went into remission during pregnancy but flared when the baby was born. It seems this disease has alot to do with hormonal changes in the body or at least it seems to set it off or on. I am truly sorry things worked out the way it did for you but there are women trying to have children here as well. With help from their doctors. Please keep your spirits up and take good care. I am sure you will get alot of replies from your post. Please ask whatever you feel you want to. Sheri Stills and pregnancy Hi, i am new here and it took me a long time to finally post a message. my name is tatjana, i am german and 30 years old. i have always been a healty female. since jan of 2000 my husband frank and i tried to have a baby. i didnt have a mentrustion at all after stopping the pill and therefore it took a very long time to get things back in order. i finally became pregnant in april of this year. the joy was only ours for a very short time since i was diagnosed with stills disease in my 8 th week of pregnancy. i was lucky because i was transferred to a very good hospital and the docs were able to diagnose and treat me for stills. however, i lost the baby in the hospital 2 days after treatment. it was more due to the high fever i had for over 10 days than the medication. well i survived and i am very very thankful for that. i felt strong right after i got out of the hospital and tried to be positive. i just felt that i didnt have enough strength for me and the baby. now i feel pretty lost here...first of there arent a lot of capable drs to treat stills here in germany/my area. also none of the drs can tell me if and when it is advisable to try for a new pregnancy. i wasnt successful trying to find statictics on stills and pregnancy. i did a lot of reading on this site but couldnt really find answers either. i am currently on 10 mg of prednis. my knees and wrists are aching sometimes, worse when it is hot. i have to go back to the rheumatologist in sept and i will also go to a genetic counseling then. so let me wrap it up and see if any of you can help or encourage me. anything would be helpful at this point: 1. is there anyone who didnt have the disease and had an onset during pregnancy? 2. is it advisable to try for another pregnancy? if so when? i read of a lot of women who have children in the member historys, so i do have hope. however, i dont really know how much of a difference it makes me having had the onset with my first pregnancy. many thanks and greetings from germany. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 Welcome Tatjana, I am sorry for your loss. I know it hurts you and your husband a lot. You are still very young, and hopefully you will still be able to have a baby sometime in the future. You will need a good doctor who knows about this disease. As you have already had a speedy diagnosis, you are on your way in fighting this " dragon. " I can only answer your first question. I was in my 30's, and had been in a total remission from the disease for about three years. (by total, I mean no meds. no symptons..felt normal for three whole years.) Then I became pregnant, I lost the baby at 8 weeks pregnancy the same as you did...I was under a great deal of stress at the time (family problems) and ended up in the hospital very ill, and started to run temps. I lost the baby " before " going on any meds. I have not been in remission since then. I already had three children, but even after al lof these years I have a little soft white baby gown with little pink flowers on it that I look at once in a while. Just wanted to tell you that to let you know that even if you were only 8 weeks pregnant, it still hurts, and hurts for a long time. My heart goes out to you and your hubby too. You will receive more information from others in this group who know more than I do about pregnancy and meds etc. I hope you get the answers you are looking for Tatjana. Remember though, we are all very different, and what works for one of us, doesn't work for another. Try to keep a positive attiude, and I hope your dreams of having a babe come true. Again, welcome...tricia Stills and pregnancy > Hi, > i am new here and it took me a long time to finally post a message. > my name is tatjana, i am german and 30 years old. i have always been > a healty female. since jan of 2000 my husband frank and i tried to > have a baby. i didnt have a mentrustion at all after stopping the > pill and therefore it took a very long time to get things back in > order. i finally became pregnant in april of this year. the joy was > only ours for a very short time since i was diagnosed with stills > disease in my 8 th week of pregnancy. i was lucky because i was > transferred to a very good hospital and the docs were able to > diagnose and treat me for stills. however, i lost the baby in the > hospital 2 days after treatment. it was more due to the high fever i > had for over 10 days than the medication. well i survived and i am > very very thankful for that. i felt strong right after i got out of > the hospital and tried to be positive. i just felt that i didnt have > enough strength for me and the baby. now i feel pretty lost > here...first of there arent a lot of capable drs to treat stills here > in germany/my area. also none of the drs can tell me if and when it > is advisable to try for a new pregnancy. i wasnt successful trying to > find statictics on stills and pregnancy. i did a lot of reading on > this site but couldnt really find answers either. i am currently on > 10 mg of prednis. my knees and wrists are aching sometimes, worse > when it is hot. i have to go back to the rheumatologist in sept and i > will also go to a genetic counseling then. so let me wrap it up and > see if any of you can help or encourage me. anything would be helpful > at this point: > 1. is there anyone who didnt have the disease and had an onset during > pregnancy? > 2. is it advisable to try for another pregnancy? if so when? > i read of a lot of women who have children in the member historys, so > i do have hope. however, i dont really know how much of a difference > it makes me having had the onset with my first pregnancy. > many thanks and greetings from germany. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 Sweetie, welcome to the group! What part of Germany are you in? I have a friend who is an MD in Cologne... Angie Stills and pregnancy > Hi, > i am new here and it took me a long time to finally post a message. > my name is tatjana, i am german and 30 years old. i have always been > a healty female. since jan of 2000 my husband frank and i tried to > have a baby. i didnt have a mentrustion at all after stopping the > pill and therefore it took a very long time to get things back in > order. i finally became pregnant in april of this year. the joy was > only ours for a very short time since i was diagnosed with stills > disease in my 8 th week of pregnancy. i was lucky because i was > transferred to a very good hospital and the docs were able to > diagnose and treat me for stills. however, i lost the baby in the > hospital 2 days after treatment. it was more due to the high fever i > had for over 10 days than the medication. well i survived and i am > very very thankful for that. i felt strong right after i got out of > the hospital and tried to be positive. i just felt that i didnt have > enough strength for me and the baby. now i feel pretty lost > here...first of there arent a lot of capable drs to treat stills here > in germany/my area. also none of the drs can tell me if and when it > is advisable to try for a new pregnancy. i wasnt successful trying to > find statictics on stills and pregnancy. i did a lot of reading on > this site but couldnt really find answers either. i am currently on > 10 mg of prednis. my knees and wrists are aching sometimes, worse > when it is hot. i have to go back to the rheumatologist in sept and i > will also go to a genetic counseling then. so let me wrap it up and > see if any of you can help or encourage me. anything would be helpful > at this point: > 1. is there anyone who didnt have the disease and had an onset during > pregnancy? > 2. is it advisable to try for another pregnancy? if so when? > i read of a lot of women who have children in the member historys, so > i do have hope. however, i dont really know how much of a difference > it makes me having had the onset with my first pregnancy. > many thanks and greetings from germany. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2001 Report Share Posted August 11, 2001 hi angie i live in bad kreuznach germany. the closest bigger city is frankfurt. cologne is about 1,5 hours away from here. so what kind of doc is this?? thx for the response. tatjana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2001 Report Share Posted August 11, 2001 hi and thank you for your sweet and personal response. it is saturday morning over here in germany, a nice sunny day and i just had breakfast with my husband, then reading your message. it felt so nice to see that there are others out there. i guess there are a lot more in the u.s. because of the size..no wonder. i am trying to stay positive, it just doesnt always work that way. i guess i am just very scare and hesitant to make any decisions about my future. i want to lead a normal life but i dont know if this is possible. i am experiencing minor knee and wrist pain and that already scares me a little. i guess i am still in the phase of rather ignoring the disease than learning to live with it. but i am sure it will all fall into place. it would be nice for me to kind of have an idea of what my chances are to have a healthy pregnancy and give birth to a healthy baby. but only time will tell and i have to learn to be patient, not one of my greatest traits. again, thank you for your response and have a great weekend. tatjana and frank from germany Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2001 Report Share Posted August 14, 2001 Hi Tatjana, I am very sorry to read that you have lost your baby and that you have Stills. But I am sure things will work out for you fine. You are still young and it looks like as if you had a very fast diagnosis, which I think is very important... I (36) am actually half German (mother side).I was born in Soltau and we lived close to Koeln, till I was 11 years old. But now we are living with my British husband (Brad) and two sons (Jack and ), dog (Freddy) and cat (Markus) in Istanbul. Actually I was diagnosed with Stills after I had Jack in 1995. I guess that I had Stills symptoms, when I was 12 years old, but it was never diagnosed at that time. After a few weeks of intense Aspirin treatment, all complains disappeared. When I got pregnant at the age of 29, I did not know that I had Stills and I had a very good pregnancy/birth. But my problems started after I got back to work and after my first periods...I thought I had a " long term flu " with high fevers, plus lots of bone ache. When the fevers did not drop, they started to test me for whatever was possible. No diagnosis, but the high dose of steroids actually helped. Then I found my rheumy, who looked at my test results, asked for some more and told me that he thinks that I had Stills. But I went into remission. Had no complains again, but tried especially not to get under too much stress and to keep my physical condition as good as possible. Then I got pregnant for the second time, saw my rheumy again, but did not even think that I might get sick. The whole time of 9 months no problems. Right after the birth, which was this time a cesarian, I started to feel achy again. Had higher temperatures, sweating and bone aches. But we decided to wait, in order to start any meds and the symptons disappeared after a few weeks. Till just after my first period (after giving birth) in November, I started to get the same symptoms. Lighter meds like Quensil (Plaquenil) did not help. Since then I am still on MTX (15 mg) and steroids (7,5 mg). It took a while (roughly 3 months) till I had the right combination. Since several months, I am now as they call it " in remission with drugs " . And I think, that when we are back from our holiday (I am writing from Spain) next week, that my sedimentation will be totally dropped. My main complains now, are the side effects from the drugs...? I hope to continue to drop the doses. Allthough I had probably a very tough year, I am sure that it was still worth it. Georgie is so much fun. On the other hand, I had never cried and prayed in my life so much.... I guess joining the group, was one of the best things what happened. I have learned so much, from everybody. In my view, to have a doctor who has experience with Stills patients, is very important. On the other hand beside being a part of the group, you should get your husband to read at least from time to time, some of the mails as well. Because it is such a complex illness, it is difficult to understand it. And you need a lot of support. Are you on any other drugs than steroids? I hope things will work out fine. Please do not hesitate to write, if you have any questions. Take care. Fatma ---------- >From: tatjanawilson@... >To: Stillsdisease >Subject: Stills and pregnancy >Date: Fri, Aug 10, 2001, 11:17 AM > > Hi, > i am new here and it took me a long time to finally post a message. > my name is tatjana, i am german and 30 years old. i have always been > a healty female. since jan of 2000 my husband frank and i tried to > have a baby. i didnt have a mentrustion at all after stopping the > pill and therefore it took a very long time to get things back in > order. i finally became pregnant in april of this year. the joy was > only ours for a very short time since i was diagnosed with stills > disease in my 8 th week of pregnancy. i was lucky because i was > transferred to a very good hospital and the docs were able to > diagnose and treat me for stills. however, i lost the baby in the > hospital 2 days after treatment. it was more due to the high fever i > had for over 10 days than the medication. well i survived and i am > very very thankful for that. i felt strong right after i got out of > the hospital and tried to be positive. i just felt that i didnt have > enough strength for me and the baby. now i feel pretty lost > here...first of there arent a lot of capable drs to treat stills here > in germany/my area. also none of the drs can tell me if and when it > is advisable to try for a new pregnancy. i wasnt successful trying to > find statictics on stills and pregnancy. i did a lot of reading on > this site but couldnt really find answers either. i am currently on > 10 mg of prednis. my knees and wrists are aching sometimes, worse > when it is hot. i have to go back to the rheumatologist in sept and i > will also go to a genetic counseling then. so let me wrap it up and > see if any of you can help or encourage me. anything would be helpful > at this point: > 1. is there anyone who didnt have the disease and had an onset during > pregnancy? > 2. is it advisable to try for another pregnancy? if so when? > i read of a lot of women who have children in the member historys, so > i do have hope. however, i dont really know how much of a difference > it makes me having had the onset with my first pregnancy. > many thanks and greetings from germany. ---------- >From: tatjanawilson@... >To: Stillsdisease >Subject: Stills and pregnancy >Date: Fri, Aug 10, 2001, 11:17 AM > > Hi, > i am new here and it took me a long time to finally post a message. > my name is tatjana, i am german and 30 years old. i have always been > a healty female. since jan of 2000 my husband frank and i tried to > have a baby. i didnt have a mentrustion at all after stopping the > pill and therefore it took a very long time to get things back in > order. i finally became pregnant in april of this year. the joy was > only ours for a very short time since i was diagnosed with stills > disease in my 8 th week of pregnancy. i was lucky because i was > transferred to a very good hospital and the docs were able to > diagnose and treat me for stills. however, i lost the baby in the > hospital 2 days after treatment. it was more due to the high fever i > had for over 10 days than the medication. well i survived and i am > very very thankful for that. i felt strong right after i got out of > the hospital and tried to be positive. i just felt that i didnt have > enough strength for me and the baby. now i feel pretty lost > here...first of there arent a lot of capable drs to treat stills here > in germany/my area. also none of the drs can tell me if and when it > is advisable to try for a new pregnancy. i wasnt successful trying to > find statictics on stills and pregnancy. i did a lot of reading on > this site but couldnt really find answers either. i am currently on > 10 mg of prednis. my knees and wrists are aching sometimes, worse > when it is hot. i have to go back to the rheumatologist in sept and i > will also go to a genetic counseling then. so let me wrap it up and > see if any of you can help or encourage me. anything would be helpful > at this point: > 1. is there anyone who didnt have the disease and had an onset during > pregnancy? > 2. is it advisable to try for another pregnancy? if so when? > i read of a lot of women who have children in the member historys, so > i do have hope. however, i dont really know how much of a difference > it makes me having had the onset with my first pregnancy. > many thanks and greetings from germany. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2001 Report Share Posted August 24, 2001 Dear Tatjana, First of all welcome to the group. I hope you will find the answers and support that you are looking for here. I am so sorry about your loss of your baby and that you ended up with this disease. My name is , I have Systemic JRA since I was 12 and I am now 34. This is basically the same as Stills Disease. I have 2 beautiful children. It is definitely possible to have children with this disease. In fact some women go into a remission during pregnancy. I think the most important thing is to make sure that your disease is some what stable and that none of the meds you take are not harmful to the baby. I believe your chances of being able to have children in the future with this disease are very good. Of course I don't know anything about your medical history. I don't know if you have any other problems that could hinder your ability to have children. The onset of the disease is usually the worst. I can definitely understand how the onset of this disease could be stressful for the baby and you. Unfortunately you are not alone when it comes to finding good knowledgeable and caring Dr's to help us with our disease. Thanks for sharing your experience with our group. I am sure it took a lot of courage. I just can't imagine the grief you must be experiencing. I will be sending your family lots of wonderful thoughts and prayers. Best Wishes, jatw@... Stills and pregnancy > Hi, > i am new here and it took me a long time to finally post a message. > my name is tatjana, i am german and 30 years old. i have always been > a healty female. since jan of 2000 my husband frank and i tried to > have a baby. i didnt have a mentrustion at all after stopping the > pill and therefore it took a very long time to get things back in > order. i finally became pregnant in april of this year. the joy was > only ours for a very short time since i was diagnosed with stills > disease in my 8 th week of pregnancy. i was lucky because i was > transferred to a very good hospital and the docs were able to > diagnose and treat me for stills. however, i lost the baby in the > hospital 2 days after treatment. it was more due to the high fever i > had for over 10 days than the medication. well i survived and i am > very very thankful for that. i felt strong right after i got out of > the hospital and tried to be positive. i just felt that i didnt have > enough strength for me and the baby. now i feel pretty lost > here...first of there arent a lot of capable drs to treat stills here > in germany/my area. also none of the drs can tell me if and when it > is advisable to try for a new pregnancy. i wasnt successful trying to > find statictics on stills and pregnancy. i did a lot of reading on > this site but couldnt really find answers either. i am currently on > 10 mg of prednis. my knees and wrists are aching sometimes, worse > when it is hot. i have to go back to the rheumatologist in sept and i > will also go to a genetic counseling then. so let me wrap it up and > see if any of you can help or encourage me. anything would be helpful > at this point: > 1. is there anyone who didnt have the disease and had an onset during > pregnancy? > 2. is it advisable to try for another pregnancy? if so when? > i read of a lot of women who have children in the member historys, so > i do have hope. however, i dont really know how much of a difference > it makes me having had the onset with my first pregnancy. > many thanks and greetings from germany. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2001 Report Share Posted August 28, 2001 hi and thank you so much for your response. i was surprised how many people wrote to me and i truey dont feel so alone anymore. i am really having a hard time right now...another friend of mine is pregnant and as happy as i am for her, as sad i am for myself. i just went to the rheumatologist yesterday. the apt was informative. however not really what i wanted to hear. i am still on 10 mg of prednisone and he wants to lower the dose by 1 mg a month. i was a little confused because that seems so little. he also stated it would be wise to wait until i am off the prednisone before i try to get pregnant again. really tricky. i feel healthy now, it has been 3 months out of the hospital. i have minor pain in my knees and wrists sometimes. i really really need your help making these decisions right now. my job is going down the drain and i have a new job offer in heidelberg, that is about an hour from here and that is where my husband is already working. he has been commuting for the past 2 years. what i really really want is to be a stay-at-home mom but the doctors are telling me to wait before i try to get pregnant again. but they cant really give me a good reason to wait...besides the fact that i am still taking prednisone. nobody knows if in my case the disease will come back while i am pregnant whether it is in a year or in two years. i am trying to be smart about all this and not do anything stupid but i am really confused. so can anyone write anything about pregnancy after being diagnosed with the disease, how long to wait, when to try, prednisone and pregnancy. your help and support is greatly appreciated. many thanks and greetings from germany tatjana --- Matheson wrote: > Hi Tatjana and welcome to you! There are so many > people who had the onset after having children and > some even went into remission during pregnancy but > flared when the baby was born. It seems this disease > has alot to do with hormonal changes in the body or > at least it seems to set it off or on. I am truly > sorry things worked out the way it did for you but > there are women trying to have children here as > well. With help from their doctors. Please keep your > spirits up and take good care. I am sure you will > get alot of replies from your post. Please ask > whatever you feel you want to. > Sheri > Stills and pregnancy > > > Hi, > i am new here and it took me a long time to > finally post a message. > my name is tatjana, i am german and 30 years old. > i have always been > a healty female. since jan of 2000 my husband > frank and i tried to > have a baby. i didnt have a mentrustion at all > after stopping the > pill and therefore it took a very long time to get > things back in > order. i finally became pregnant in april of this > year. the joy was > only ours for a very short time since i was > diagnosed with stills > disease in my 8 th week of pregnancy. i was lucky > because i was > transferred to a very good hospital and the docs > were able to > diagnose and treat me for stills. however, i lost > the baby in the > hospital 2 days after treatment. it was more due > to the high fever i > had for over 10 days than the medication. well i > survived and i am > very very thankful for that. i felt strong right > after i got out of > the hospital and tried to be positive. i just felt > that i didnt have > enough strength for me and the baby. now i feel > pretty lost > here...first of there arent a lot of capable drs > to treat stills here > in germany/my area. also none of the drs can tell > me if and when it > is advisable to try for a new pregnancy. i wasnt > successful trying to > find statictics on stills and pregnancy. i did a > lot of reading on > this site but couldnt really find answers either. > i am currently on > 10 mg of prednis. my knees and wrists are aching > sometimes, worse > when it is hot. i have to go back to the > rheumatologist in sept and i > will also go to a genetic counseling then. so let > me wrap it up and > see if any of you can help or encourage me. > anything would be helpful > at this point: > 1. is there anyone who didnt have the disease and > had an onset during > pregnancy? > 2. is it advisable to try for another pregnancy? > if so when? > i read of a lot of women who have children in the > member historys, so > i do have hope. however, i dont really know how > much of a difference > it makes me having had the onset with my first > pregnancy. > many thanks and greetings from germany. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2001 Report Share Posted August 28, 2001 Hi Tatjana, I would definitely consider your docs worry over decreasing the pred slowly. It is so important to do so - or it could bring on a flare instantly if you come off too fast. You will be a great mom when you are healthy and happy. That day will come. Children are such a blessing and wonder and don't feel bad about your feeling towards your friend it is only natural. I am sure she would understand also. Good Luck on decreasing the pred and let us know how things are going with you. " Good things come to those who wait! " Take Good Care Sheri Stills and pregnancy > > > Hi, > i am new here and it took me a long time to > finally post a message. > my name is tatjana, i am german and 30 years old. > i have always been > a healty female. since jan of 2000 my husband > frank and i tried to > have a baby. i didnt have a mentrustion at all > after stopping the > pill and therefore it took a very long time to get > things back in > order. i finally became pregnant in april of this > year. the joy was > only ours for a very short time since i was > diagnosed with stills > disease in my 8 th week of pregnancy. i was lucky > because i was > transferred to a very good hospital and the docs > were able to > diagnose and treat me for stills. however, i lost > the baby in the > hospital 2 days after treatment. it was more due > to the high fever i > had for over 10 days than the medication. well i > survived and i am > very very thankful for that. i felt strong right > after i got out of > the hospital and tried to be positive. i just felt > that i didnt have > enough strength for me and the baby. now i feel > pretty lost > here...first of there arent a lot of capable drs > to treat stills here > in germany/my area. also none of the drs can tell > me if and when it > is advisable to try for a new pregnancy. i wasnt > successful trying to > find statictics on stills and pregnancy. i did a > lot of reading on > this site but couldnt really find answers either. > i am currently on > 10 mg of prednis. my knees and wrists are aching > sometimes, worse > when it is hot. i have to go back to the > rheumatologist in sept and i > will also go to a genetic counseling then. so let > me wrap it up and > see if any of you can help or encourage me. > anything would be helpful > at this point: > 1. is there anyone who didnt have the disease and > had an onset during > pregnancy? > 2. is it advisable to try for another pregnancy? > if so when? > i read of a lot of women who have children in the > member historys, so > i do have hope. however, i dont really know how > much of a difference > it makes me having had the onset with my first > pregnancy. > many thanks and greetings from germany. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2001 Report Share Posted August 28, 2001 Hey Tatjana! I'm glad that you posted! I know that it sounds like 1 mg a month isn't much, but don't be surprised if you can't drop that fast. I have been trying to cut down from 10 for over a year, and right now I am at 3 mg 4 days per week, and 2.5 mg 3 days per week. It's hard - my body fights. If you can afford to stay at home, I would suggest trying it, even if you're not expecting your baby yet. It would give you time to focus on getting well, alleviate the stress that jobs give you, and also allow you to see how you're going to adapt to being a non-income producing person. It's very hard, especially if you don't have a bunch of friends and family around to support you. By the way, your English is great! Angie Stills and pregnancy > > > > > > Hi, > > i am new here and it took me a long time to > > finally post a message. > > my name is tatjana, i am german and 30 years old. > > i have always been > > a healty female. since jan of 2000 my husband > > frank and i tried to > > have a baby. i didnt have a mentrustion at all > > after stopping the > > pill and therefore it took a very long time to get > > things back in > > order. i finally became pregnant in april of this > > year. the joy was > > only ours for a very short time since i was > > diagnosed with stills > > disease in my 8 th week of pregnancy. i was lucky > > because i was > > transferred to a very good hospital and the docs > > were able to > > diagnose and treat me for stills. however, i lost > > the baby in the > > hospital 2 days after treatment. it was more due > > to the high fever i > > had for over 10 days than the medication. well i > > survived and i am > > very very thankful for that. i felt strong right > > after i got out of > > the hospital and tried to be positive. i just felt > > that i didnt have > > enough strength for me and the baby. now i feel > > pretty lost > > here...first of there arent a lot of capable drs > > to treat stills here > > in germany/my area. also none of the drs can tell > > me if and when it > > is advisable to try for a new pregnancy. i wasnt > > successful trying to > > find statictics on stills and pregnancy. i did a > > lot of reading on > > this site but couldnt really find answers either. > > i am currently on > > 10 mg of prednis. my knees and wrists are aching > > sometimes, worse > > when it is hot. i have to go back to the > > rheumatologist in sept and i > > will also go to a genetic counseling then. so let > > me wrap it up and > > see if any of you can help or encourage me. > > anything would be helpful > > at this point: > > 1. is there anyone who didnt have the disease and > > had an onset during > > pregnancy? > > 2. is it advisable to try for another pregnancy? > > if so when? > > i read of a lot of women who have children in the > > member historys, so > > i do have hope. however, i dont really know how > > much of a difference > > it makes me having had the onset with my first > > pregnancy. > > many thanks and greetings from germany. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2001 Report Share Posted August 28, 2001 Hi Tatjana, I have been to Germany several times and know Heidelberg well. This subject is such a difficult one and for many it just comes down to a very personal decision based on your own belief system and individual circumstances. You sound like such a loving human being and I know God has a very special little someone in store for you. I know how it feels to watch other Moms with their little ones and wonder why it could not be that way for me. Don't beat yourself up for feeling this way. I went through many, and I mean many, miscarriages before having my two beautiful sons. They are my greatest gift to me from God. I would like to hear more form you about the circumstances of your past pregnancies and share some info with you about this. This is a very personal subject for me and would be happy to share with you. Just e-mail me in private and we can discuss this further. Have you ever been tested for Alpha feta protein syndrome. An antibody disorder many women with Stills or RA have without knowing about it. Hope to be of help, Bridget __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2001 Report Share Posted August 29, 2001 hi fatma i still wanted to thank you for sharing your personal experience with me. it encourages me a lot to hear about other women to have successfull pregnancies and give birth. unfortunately my time hasnt come yet and i just have to learn to accept that. i have to admit that i went to work way too fast after i got out of the hospital but it is too late now to go back to change it. for weeks i felt so positive and was just happy to be alive. then it all started to settle in and now it feels like a big load on me: the disease, the miscarriage, seeing my friends happy with their kids. but i do believe that this is my way and for whatever reason it is, i have to take it, conquer it and learn to understand it. i know that god loves me and that all will work out. i is just so very painful to deal with it in the meantime. oh i am going way off here. to answer your question, i am on prednisone only, still 10 mg daily. that is the only med. i am taking, no pain meds. will post another message in a little while with the newest update from my doc yesterday. many thanks and innereurope greetings to you. you have been around the world i hear. that is funny, so have i. please mail me again if you feel like it. tatjana --- fatma langford wrote: > Hi Tatjana, > I am very sorry to read that you have lost your baby > and that you have > Stills. But I am sure things will work out for you > fine. You are still young > and it looks like as if you had a very fast > diagnosis, which I think is very > important... I (36) am actually half German (mother > side).I was born in > Soltau and we lived close to Koeln, till I was 11 > years old. But now we are > living with my British husband (Brad) and two sons > (Jack and ), dog > (Freddy) and cat (Markus) in Istanbul. > Actually I was diagnosed with Stills after I had > Jack in 1995. I guess that > I had Stills symptoms, when I was 12 years old, but > it was never diagnosed > at that time. After a few weeks of intense Aspirin > treatment, all complains > disappeared. > When I got pregnant at the age of 29, I did not know > that I had Stills and I > had a very good pregnancy/birth. But my problems > started after I got back to > work and after my first periods...I thought I had a > " long term flu " with > high fevers, plus lots of bone ache. When the fevers > did not drop, they > started to test me for whatever was possible. No > diagnosis, but the high > dose of steroids actually helped. Then I found my > rheumy, who looked at my > test results, asked for some more and told me that > he thinks that I had > Stills. But I went into remission. Had no complains > again, but tried > especially not to get under too much stress and to > keep my physical > condition as good as possible. Then I got pregnant > for the second time, saw > my rheumy again, but did not even think that I might > get sick. The whole > time of 9 months no problems. Right after the birth, > which was this time a > cesarian, I started to feel achy again. Had higher > temperatures, sweating > and bone aches. But we decided to wait, in order to > start any meds and the > symptons disappeared after a few weeks. > Till just after my first period (after giving birth) > in November, I started > to get the same symptoms. > Lighter meds like Quensil (Plaquenil) did not help. > Since then I am still on > MTX (15 mg) and steroids (7,5 mg). It took a while > (roughly 3 months) till I > had the right combination. Since several months, I > am now as they call it " > in remission with drugs " . And I think, that when we > are back from our > holiday (I am writing from Spain) next week, that my > sedimentation will be > totally dropped. My main complains now, are the side > effects from the > drugs...? I hope to continue to drop the doses. > Allthough I had probably a very tough year, I am > sure that it was still > worth it. Georgie is so much fun. On the other hand, > I had never cried and > prayed in my life so much.... I guess joining the > group, was one of the best > things what happened. I have learned so much, from > everybody. > In my view, to have a doctor who has experience with > Stills patients, is > very important. On the other hand beside being a > part of the group, you > should get your husband to read at least from time > to time, some of the > mails as well. Because it is such a complex illness, > it is difficult to > understand it. And you need a lot of support. Are > you on any other drugs > than steroids? I hope things will work out fine. > Please do not hesitate to > write, if you have any questions. Take care. > Fatma > > > > ---------- > >From: tatjanawilson@... > >To: Stillsdisease > >Subject: Stills and pregnancy > >Date: Fri, Aug 10, 2001, 11:17 AM > > > > > Hi, > > i am new here and it took me a long time to > finally post a message. > > my name is tatjana, i am german and 30 years old. > i have always been > > a healty female. since jan of 2000 my husband > frank and i tried to > > have a baby. i didnt have a mentrustion at all > after stopping the > > pill and therefore it took a very long time to get > things back in > > order. i finally became pregnant in april of this > year. the joy was > > only ours for a very short time since i was > diagnosed with stills > > disease in my 8 th week of pregnancy. i was lucky > because i was > > transferred to a very good hospital and the docs > were able to > > diagnose and treat me for stills. however, i lost > the baby in the > > hospital 2 days after treatment. it was more due > to the high fever i > > had for over 10 days than the medication. well i > survived and i am > > very very thankful for that. i felt strong right > after i got out of > > the hospital and tried to be positive. i just felt > that i didnt have > > enough strength for me and the baby. now i feel > pretty lost > > here...first of there arent a lot of capable drs > to treat stills here > > in germany/my area. also none of the drs can tell > me if and when it > > is advisable to try for a new pregnancy. i wasnt > successful trying to > > find statictics on stills and pregnancy. i did a > lot of reading on > > this site but couldnt really find answers either. > i am currently on > > 10 mg of prednis. my knees and wrists are aching > sometimes, worse > > when it is hot. i have to go back to the > rheumatologist in sept and i > > will also go to a genetic counseling then. so let > me wrap it up and > > see if any of you can help or encourage me. > anything would be helpful > > at this point: > > 1. is there anyone who didnt have the disease and > had an onset during > > pregnancy? > > 2. is it advisable to try for another pregnancy? > if so when? > > i read of a lot of women who have children in the > member historys, so > > i do have hope. however, i dont really know how > much of a difference > > it makes me having had the onset with my first > pregnancy. > > many thanks and greetings from germany. > > ---------- > >From: tatjanawilson@... > >To: Stillsdisease > >Subject: Stills and pregnancy > >Date: Fri, Aug 10, 2001, 11:17 AM > > > > > Hi, > > i am new here and it took me a long time to > finally post a message. > > my name is tatjana, i am german and 30 years old. > i have always been > > a healty female. since jan of 2000 my husband > frank and i tried to > > have a baby. i didnt have a mentrustion at all > after stopping the > > pill and therefore it took a very long time to get > things back in > > order. i finally became pregnant in april of this > year. the joy was > > only ours for a very short time since i was > diagnosed with stills > > disease in my 8 th week of pregnancy. i was lucky > because i was > > transferred to a very good hospital and the docs > were able to > > diagnose and treat me for stills. however, i lost > the baby in the > > hospital 2 days after treatment. it was more due > to the high fever i > > had for over 10 days than the medication. well i > survived and i am > > very very thankful for that. i felt strong right > after i got out of > > the hospital and tried to be positive. i just felt > that i didnt have > > enough strength for me and the baby. now i feel > pretty lost > > here...first of there arent a lot of capable drs > to treat stills here > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2001 Report Share Posted September 1, 2001 hi angie and everyone else, thank you so much for all the replies. i really feel good being part of the group. however i am still not so sure it is all good for me. i have just been diagnosed in may and i am still fighting with myself accepting that i have the disease and just hoping that it will go away. so when i read about all the pain that a lot of you are in, i get sooo scared. but i also want to educate myself about the disease and get information about the disease and pregnancy and in that sense it has been very helpful to be here. i am sure it is only normal to be afraid and to get scared so shortly after being diagnosed. i called my rheumatologist again on tuesday because i wasnt happy with his answer of me not being able to try for another pregnancy until i am off the prednisone. he explained, that in all reality, he doesnt know at this point if i am sick or not because the pred. suppresses/could suppress the disease if it is still active. therefore he wants me to wait until i am off of it to see if it is active or not. if not, then i am ok to start getting pregnant again. knowing this changed everything and last week was hell. so here it goes. i quit my job, i have a new job as of october in heidelberg, this is where my husband works, an hour away from where we live. the plan is to start working there and then to move there so my husband doesnt have to commute anymore. i used to be an adventurous woman and was never scared of anything. right now i am scared of starting a new job, scared of moving, scared of change. can any of you relate to that?i have a great need for security and stability in my life right now and it seems like everything is changing and i dont want it. uh, sorry i went a little overboard here but i had to vent! i am sure that all will work out but right now, i feel like a small, insecure child, not wanting to make decisions, not wanting change, just wanting protection. gotta go now, wishing all of you a wonderful weekend. greetings from germany, tatjana --- Angie wrote: > Hey Tatjana! > > I'm glad that you posted! I know that it sounds like > 1 mg a month isn't > much, but don't be surprised if you can't drop that > fast. I have been trying > to cut down from 10 for over a year, and right now I > am at 3 mg 4 days per > week, and 2.5 mg 3 days per week. It's hard - my > body fights. > > If you can afford to stay at home, I would suggest > trying it, even if you're > not expecting your baby yet. It would give you time > to focus on getting > well, alleviate the stress that jobs give you, and > also allow you to see how > you're going to adapt to being a non-income > producing person. It's very > hard, especially if you don't have a bunch of > friends and family around to > support you. > > By the way, your English is great! > > Angie > > > > Stills and pregnancy > > > > > > > > > Hi, > > > i am new here and it took me a long time to > > > finally post a message. > > > my name is tatjana, i am german and 30 years > old. > > > i have always been > > > a healty female. since jan of 2000 my husband > > > frank and i tried to > > > have a baby. i didnt have a mentrustion at all > > > after stopping the > > > pill and therefore it took a very long time to > get > > > things back in > > > order. i finally became pregnant in april of > this > > > year. the joy was > > > only ours for a very short time since i was > > > diagnosed with stills > > > disease in my 8 th week of pregnancy. i was > lucky > > > because i was > > > transferred to a very good hospital and the > docs > > > were able to > > > diagnose and treat me for stills. however, i > lost > > > the baby in the > > > hospital 2 days after treatment. it was more > due > > > to the high fever i > > > had for over 10 days than the medication. well > i > > > survived and i am > > > very very thankful for that. i felt strong > right > > > after i got out of > > > the hospital and tried to be positive. i just > felt > > > that i didnt have > > > enough strength for me and the baby. now i > feel > > > pretty lost > > > here...first of there arent a lot of capable > drs > > > to treat stills here > > > in germany/my area. also none of the drs can > tell > > > me if and when it > > > is advisable to try for a new pregnancy. i > wasnt > > > successful trying to > > > find statictics on stills and pregnancy. i did > a > > > lot of reading on > > > this site but couldnt really find answers > either. > > > i am currently on > > > 10 mg of prednis. my knees and wrists are > aching > > > sometimes, worse > > > when it is hot. i have to go back to the > > > rheumatologist in sept and i > > > will also go to a genetic counseling then. so > let > > > me wrap it up and > > > see if any of you can help or encourage me. > > > anything would be helpful > > > at this point: > > > 1. is there anyone who didnt have the disease > and > > > had an onset during > > > pregnancy? > > > 2. is it advisable to try for another > pregnancy? > > > if so when? > > > i read of a lot of women who have children in > the > > > member historys, so > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2001 Report Share Posted September 1, 2001 ho sheri i just read your posting again and once again your words " good things come to those who wait " made me smile. i just had to be so patient already because it took me almost a year and a half to get pregnant, then to loose the baby and be diagnosed with stills. so it is hard for me to believe in these words sometimes. but I DO. and i am sure that one day i will understand why everything had to be this way. and until then i have to learn to be positive about it. but huh it is hard sometimes. but the day will come and then i will remind myself of your posting :-) unfortunately my friends dont have a lot of words for me, they dont know how to deal with the whole situation. maybe i am expecting too much of them...i find more support and encouraging words here. thanks again. big smile from germany, tatjana --- Matheson wrote: > Hi Tatjana, I would definitely consider your docs > worry over decreasing the pred slowly. It is so > important to do so - or it could bring on a flare > instantly if you come off too fast. You will be a > great mom when you are healthy and happy. That day > will come. Children are such a blessing and wonder > and don't feel bad about your feeling towards your > friend it is only natural. I am sure she would > understand also. Good Luck on decreasing the pred > and let us know how things are going with you. " Good > things come to those who wait! " Take Good Care > Sheri > Stills and pregnancy > > > > > > Hi, > > i am new here and it took me a long time to > > finally post a message. > > my name is tatjana, i am german and 30 years > old. > > i have always been > > a healty female. since jan of 2000 my husband > > frank and i tried to > > have a baby. i didnt have a mentrustion at all > > after stopping the > > pill and therefore it took a very long time to > get > > things back in > > order. i finally became pregnant in april of > this > > year. the joy was > > only ours for a very short time since i was > > diagnosed with stills > > disease in my 8 th week of pregnancy. i was > lucky > > because i was > > transferred to a very good hospital and the > docs > > were able to > > diagnose and treat me for stills. however, i > lost > > the baby in the > > hospital 2 days after treatment. it was more > due > > to the high fever i > > had for over 10 days than the medication. well > i > > survived and i am > > very very thankful for that. i felt strong > right > > after i got out of > > the hospital and tried to be positive. i just > felt > > that i didnt have > > enough strength for me and the baby. now i > feel > > pretty lost > > here...first of there arent a lot of capable > drs > > to treat stills here > > in germany/my area. also none of the drs can > tell > > me if and when it > > is advisable to try for a new pregnancy. i > wasnt > > successful trying to > > find statictics on stills and pregnancy. i did > a > > lot of reading on > > this site but couldnt really find answers > either. > > i am currently on > > 10 mg of prednis. my knees and wrists are > aching > > sometimes, worse > > when it is hot. i have to go back to the > > rheumatologist in sept and i > > will also go to a genetic counseling then. so > let > > me wrap it up and > > see if any of you can help or encourage me. > > anything would be helpful > > at this point: > > 1. is there anyone who didnt have the disease > and > > had an onset during > > pregnancy? > > 2. is it advisable to try for another > pregnancy? > > if so when? > > i read of a lot of women who have children in > the > > member historys, so > > i do have hope. however, i dont really know > how > > much of a difference > > it makes me having had the onset with my first > > pregnancy. > > many thanks and greetings from germany. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2001 Report Share Posted September 2, 2001 Tatjana, When I first found this group I also found it very hard. To read the posts and think that my little girl could hurt and be in so much pain was very hard for me. But like you I felt the need to educate myself and learn how to best help her. This group is so wonderful , but yes still at times I am quite overwhelmed, when I read about joint replacements and all the pain, and struggles that come with this disease. If its to hard remember you have that delete button, read what you want, everyone here definitely understands. Suzie Stills and pregnancy > > > > > > > > > > > > Hi, > > > > i am new here and it took me a long time to > > > > finally post a message. > > > > my name is tatjana, i am german and 30 years > > old. > > > > i have always been > > > > a healty female. since jan of 2000 my husband > > > > frank and i tried to > > > > have a baby. i didnt have a mentrustion at all > > > > after stopping the > > > > pill and therefore it took a very long time to > > get > > > > things back in > > > > order. i finally became pregnant in april of > > this > > > > year. the joy was > > > > only ours for a very short time since i was > > > > diagnosed with stills > > > > disease in my 8 th week of pregnancy. i was > > lucky > > > > because i was > > > > transferred to a very good hospital and the > > docs > > > > were able to > > > > diagnose and treat me for stills. however, i > > lost > > > > the baby in the > > > > hospital 2 days after treatment. it was more > > due > > > > to the high fever i > > > > had for over 10 days than the medication. well > > i > > > > survived and i am > > > > very very thankful for that. i felt strong > > right > > > > after i got out of > > > > the hospital and tried to be positive. i just > > felt > > > > that i didnt have > > > > enough strength for me and the baby. now i > > feel > > > > pretty lost > > > > here...first of there arent a lot of capable > > drs > > > > to treat stills here > > > > in germany/my area. also none of the drs can > > tell > > > > me if and when it > > > > is advisable to try for a new pregnancy. i > > wasnt > > > > successful trying to > > > > find statictics on stills and pregnancy. i did > > a > > > > lot of reading on > > > > this site but couldnt really find answers > > either. > > > > i am currently on > > > > 10 mg of prednis. my knees and wrists are > > aching > > > > sometimes, worse > > > > when it is hot. i have to go back to the > > > > rheumatologist in sept and i > > > > will also go to a genetic counseling then. so > > let > > > > me wrap it up and > > > > see if any of you can help or encourage me. > > > > anything would be helpful > > > > at this point: > > > > 1. is there anyone who didnt have the disease > > and > > > > had an onset during > > > > pregnancy? > > > > 2. is it advisable to try for another > > pregnancy? > > > > if so when? > > > > i read of a lot of women who have children in > > the > > > > member historys, so > > > === message truncated === > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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