Advice needed please

[Regina]

Hi everyone

so glad this topic is here, I had a child six years ago with no dx in fact I did not know anything was wrong, was ill through the whole pregnancy which ended at 28 weeks but have the most perfect little boy who is now almost six. I never thought I would get over the first pregnancy as it was so traumatic, he only weighed 1lb 10oz. Now that I have been diagnosed with SLE mild I know at least what I am dealing with. At my last visit to the hospital I asked my consultant if it would be possible for me to have another baby, he advised me to wait as it is not advisable to take plaquinil whilst pregnant. I feel like my life is not my own and I have not seen my consultant for almost 9 months as he has cancelled several times.

I am due to see him on wednesday next week and want to know what you all think, I do not understand whay I cannot try for a baby and have started to worry as I am 33, my husband is 42 and time is running out. I dont know whether it would be really irrisponsible of me to get pregnant as then they would have to manage me. I dont understand why some doctors allow plaquinil and others dont.

Any advice would be great, I have no organ involvement and have been feeling quite ok.

Regina style_emoticons/<#EMO_DIR#>/hissy1.gif

[Maia]

I would get a second opinion if you are able to do that. I was STRONGLY ENCOURAGED to stay on a full 400mg of Plaquenil while pregnant, and took a baby aspirin due to antiphospholipid antibodies. I only took 200mg though a day against the advice of my rheumy actually. Nonetheless I had a very healthy pregnancy, only one lupus flare in the middle of the 3rd trimester. In fact, I felt almost totally normal and healthy while pregnant. Better than not pregnant that's for sure!

Everything I've read, including Dr. Wallace in his book on lupus, says that in particular those women who have lupus that is quite stable with only Plaquenil, & does not involve organ involvement are A-OK to go ahead and try for a pregnancy. Your first pregnancy was kinda scary it sounds like, but that really does not have any bearing on a subsequent pregnancy's outcome especially since then you were undiagnosed and untreated. Many women that are completely healthy have problem 1st pregnancies and no problems with later ones.

I hope you can get a second opinion. And you can always just do what you feel is right, based on your own personal knowledge and research. It's your life, and your body, & if you get pregnant the doctors will just have to deal with it. Just really think through all of the details such as how you may get worse AFTER pregnancy (like what happened to me) and the realities of caring for a baby/toddler while pretty sick yourself even if it is "just" joint pain and fatigue (but realize you can get new symptoms or existing ones can get worse following pregnancy). For me, it was still totally worth it and I wouldn't change a thing I did.

[beauty]

I went through the same thing...i got put in the hospital at 6 months...found out i had antiphopholipids...which u need to get checked for...had my daughter at 28 weeks.. she was 1 lb 5 oz....and lived 17 days...she got NEC ...they had to due surgery and she never recovered...I was told then I had APS....and they thought maybe lupus....a yr later we tried again...i had to due 2 shot a day in the belly and be on b/a and yes i was on plaqunil...my dr. said i had to be for me and the baby to have a chance...i was bed rest 3 month...b/c with first preg. I had kidney stuff going on and enlarged heart....high blood pressure....I had my sec. daughter at 36 weeks ...she is now 4 and very heathly....I also had my son....work up till 36 weeks and he is also fine...now 1 1/2 I was on placqnil both preg....and i trusted my dr. but I still went to a high risk dr. and got a sec opion....and it was the same as hers....if u have any question feel free to ask...I know my dr. said i was about as high risk as they come ...anything that could happen did to me...lol...I was in a wheel chair after my son for a month b/c of a hematoma....but no matter what i went through i would do it all again.....after 5 yrs...they did tell me i do have lupus...good luck....if u have icq or something and want to talk ...let me know...
carla

[Regina]

thanks for the advice guys, it is really appreciated. Seems like you all think the same as me, was a bit worried that you would all think I was irresponsible. I am at the hospital with my consultant rhumy tomorrow, will also ask my gp to refer me to a high risk obstatrician to get some advice.

Thanks

[pnutts]

I hope your appt goes well.

I was on placquinil , along with some other things , with both my pregnancies and my girls are perfectly healthy. I would definately talk with a high risk OBGYN too.

[Regina]

style_emoticons/<#EMO_DIR#>/ok.gif hi everyone

appointment with rhumy went well and he is pleased with my progress, he said yes I can now have a baby but he would like me to come off the plaq for 3 months before. I dont agree with him and want to stay on it so I am now going to make an appointment with my gp and ask for a referral to a high risk OBGYN. wish me luck and thatnks for the advice.

I now have to give up smoking though wont be easy but i am going to do it.

style_emoticons/<#EMO_DIR#>/scaredy.gif Regina xxxx

style_emoticons/<#EMO_DIR#>/wacko.gif forgot to say tested negative for antiphilosophus antibodies (er forgive me for being thick) and lupus anticoagulent. HURRAH!!!!!

[Maia]

Overall good news I would say! It's wonderful you are negative for those antibodies as that means it's
even more likely you will have a problem free pregnancy. A high risk OB is definitely a must, and should
you get pregnant you really need to be seeing one. Several things need to be done differently with
lupie mommies to be, and they should know about them and be in consultation with your rheumy as well.

Good luck!