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My story...

Discussion in 'Living with lupus' started by icedtea_gal, Nov 26, 2010.

  1. icedtea_gal

    icedtea_gal Registered

    I had an isolated case of ITP in 2004 which was successfully treated after a couple of months on prednisone. Over the next little while, I developed other lupus symptoms like Raynauds, slight joint pain, +ANA. My lupus has always been mild and I have not been on medication since initially with ITP. Over the next few years, my health has been relatively good, I can go on 15 km hikes with no issues, I'm physically fit, exercise, etc.

    I had the go ahead from my docs to get pregnant and they all told me it will be fine. Well, we did. Around the 20th week, I started feeling really sick, I think I caught a bug somewhere. I then, over the next two months felt on and off sick, some days I was totally fatiqued, others I felt fine. Well, come the 28th week, I all of a sudden could not sleep, most importantly, I developed chest pain and had difficulty breathing. After doing a CT scan and chest X-rays, to rule out the possibility of a lung clot or heart attack, I was diagnosed as having a lupus flare - pericarditis and pleurisy. I am currently on 20mg of prednisone/day and weaning (started off on 35mg). I am under the care of a great rheumatologist. Basically he thinks my body had trouble fighting the bug and dealing with the stress of the pregnancy on my body (not to mention I had some stress in my personal/work life as well).

    It was really hard for me to deal with the entire situation. Since I was very *lucky* to have only had a mild case, I was somehow reassured it would likely stay mild. I guess I didn't know how the stress/hormones of pregnancy could affect my lupus and was never mentally prepared for something like this to unfold. I'm now 31 weeks, my emotions have settled down and I'm learning to accept what has happened and try my best to look forward to the future.

    Thanks for listening....
  2. Katharine

    Katharine Registered

    Hello and :welcome:

    First of all congratulations on your pregnancy!! I'm sorry that you had to flare so badly during it; sometimes hormones can have a pretty big influence. Some people flare while pregnant, others after the birth and of course some not at all...

    It is never easy to deal with flares like that that take you unawares. The very unpredictability of lupus can be a real pain to say the least. Hopefully, once you have given birth things will settle down once again for you. Do try to make sure you have some kind of support system in place so that you can get the rest you will need and not overdo things; small babies are very tiring at the best of times, never mind with lupus on top :hug:

  3. mooks

    mooks Registered


    congrats on your pregnancy you have done so well already!! I hope it will help you to read some of my posts about my lupus and pregnancy. I had flares resulting in pleurisy etc during the pregnancy but carried my daughter to 38 weeks and she was brn a perfect 7lb and is now a month old. It is scary and exhausting both physically and mentally beig pregnant/new mum with SLE but it is possible and you can do it!! dont worry about the pred, i was on 20mg throughout my pregnancy too and baby was fine...when she was born her blood sugar was low though because of it so be prepared for that...easily fixed by a couple of formula feeds as they cant wait for your milk if their sugar is low xxxxxxxxxxxxxxxxx good luck-you can do this!! :love:
  4. debatat

    debatat Moderator

    Hi and welcome to the site. Congratulations on your pregnancy. Sorry to hear that you are flaring, but I am pleased that you are recieving good care. Try and get as much rest as possible.

    Take care
  5. icedtea_gal

    icedtea_gal Registered

    Thank you for the words of encouragement!

    Physically, with the meds I feel a lot better. Mentally/Emotionally, the journey to recovery is still pretty tough for me. I was silly enough to think I was fine and lupus was a thing of history, but I guess it creeps up on your when you least expect it. I'm trying to hold myself together as best as I can and try to recover for the sake of my baby.
  6. Maia

    Maia Registered

    Welcome to the site and best wishes for a more uneventful pregnancy from here on out! I was one of the approximately 33% of lupus pregnant women who actually experienced an improvement while pregnant so the other side of the spectrum is also a possibility. I did have one moderate lupus flare around 32 weeks or so but it was fairly short lived. I have also met a person who went into a permanent medication free remission after having twins! So anything is possible ;)

    I think it is pretty normal to have a tough mental and emotional journey to recovery or coping/accepting that lupus has dealt you a pretty major blow. Especially when your late in pregnancy, it's a pretty emotional time. I recall my husband and I going to put together our first will/testament and was nearly a jibbering mess.

    Welcome again and take care - I hope you'll post again with a beautiful birth announcement. We make great Aunties and love to hear that sort of news!
  7. KarolH

    KarolH Registered

    Congratulations on your pregnancy and I am hoping that you move forward without any more health issues.
    It can be a tough pill to swallow trying to wrap your mind around the diagnosis but I always tell new people to read all you can.
    Knowledge is Power, the more you know the more you can relax. We get nervous and uptight at the unknown.
    I hope to get to know you better and you have found a great place to hang your hat for support, knowledge and friendship.
  8. cally

    cally Registered

    I just wanted to wish you luck with the rest of your pregnancy, I hope your health continues to improve and you enjoy the rest of your pregnancy.

    Take care and let us know how your progress.

    Cally xx
  9. countrylass

    countrylass Registered

    Hello welcome
    congratulations how wonderful news on your pregnancy,hugs for flare settle.
    im trying be preggy.
    do try pop into chat when can.
    your doing so well.
  10. icedtea_gal

    icedtea_gal Registered


    Will be 32 weeks on Saturday. Finished all my appointments this week, baby growing on course, about a week ahead in size probably due to my borderline glucose intolerance cuz of the prednisone, but I'm weaning down to 15mg now, I hope everything stays good. Emotionally/Mentally doing a little better and accepted the cards I've been dealt...just hope it's a streak of bad luck and everything is smooth from here.

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