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Thread: Newly diagnosed, freaking out, need some support!!

  1. #11
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    thanks everyone for your overwhelmingly kind and detailed answers.

    unforunately as far as the pregnancy, the rheumatologist didn't think i need to see an ob/gyn - but i'm thinking of asking my gp for a referral to one - i work for the hospital, so i know them well; perhaps they would even give me a corridor consult. i think i will ask the next one i bump into; i'd definitely feel better if they would monitor me; especially after the previous miscarriage, and being unable to prove that it wasn't related to my new diagnosis of UCTD.

    tried to talk to my boss this morning but after i hung up the phone i cried; she really doesn't get it. unfortunately my previous boss resigned and this new lady just doesn't know me well, and must think im just a hypochondriac, as after the miscarriage my GP put me off work for 3 weeks for post natal depression from all the hormonal changes. so she probably thinks im a waste of her time. unfortunately i prob just have to hang in there, until i get pregnant and can go on maternity leave. but i ain't planning on going back after the baby is born!!

    well i've taken the Plaquenil for two days now and no side effects - would they be kicking in already??

    thanks everyone. you will honestly have no idea how much your support means. i even feel more positive with my husband, cos i can relay to him what i have learnt, and he really understands better now that i have a label for my feelings.

    blessings,

    Lainy

  2. #12
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Lainy;
    UCTD is an auto-immune disorder that just hasn't manifested into one specific illness yet. However, the treatment for UCTD is almost identical to the treatments for Lupus. Also, as in the case with Lupus, your doctors will want to make sure that your symptoms are under control before approving you for pregnancy.
    I truly hope that you are able to get pregnant and that, this time, you carry to term and deliver a very healthy baby. Doing so, nowadays, with auto-immune disorders is more the norm than the exception!
    With reference to your Plaquenil. Your doctor should have explained to you that Plaquenil can take up to three months before you see or feel any significant improvement. The drug must accumulate in your body in order to be effective and this takes some time. The good news is, once the Plaquenil starts working, the symptoms respond very well and, quite often, do not come back. Most doctors will prescribe Prednisone with the Plaquenil so that you can start to feel relief from the symptoms quicker. Did your doctor prescribe Prednisone? If not, perhaps you can discuss this option with him or during your corridor consult.
    I am always perplexed how hospital employees (such as your boss) can be ignorant about auto-immune disorders? At any rate, perhaps you can provide her with some information about how the disease is systemic and, therefore, any and/or all parts of your body (muscles, tissues, organs) can develop symptoms that cause you great pain, fatigue and all over malaise. Therefore, when you call on Monday about muscle pain, and call on Tuesday about heart or lung issues, and call on Wednesday about dizziness.....these are all very real symptoms of your disease and not figments of your imagination. Your boss needs to be educated so that you are not made to feel unworthy!
    I am wishing you the very best!

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

  3. #13
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    Lainy, I am absolutely amazed that your rheumy doesn't think you need to see an OB/GYN with regard to getting/staying pregnant. Is he going to monitor you? That's not his area of expertise. BTW, multiple miscarriages are often associated with lupus....and since you're undifferentiated, there could be some lupus in the mix. One miscarriage may not mean anything, but you need to be working with a doctor who really knows his/her stuff with regard to preganancy and AI diseases. You owe it to your baby and yourself. Geeze! I want to kick your rheumy! Where does he live? (just kidding)

    If you haven't had any stomach issues with the Plaq. yet, you may very well be home free. For me and others I've spoken to, we got queasy at the very beginning, but it soon stopped. Plaq. must like you! Be patient. It does take a while to kick in.

    Please do some research on UCTD. Today rheumys like to hit it hard right at the beginning, like Plaq. with MTX or something else that suppresses the immune system, so that it doesn't morph into something else. Studies have shown this approach is much more successful than treating with Plaq. alone. Unfortunately, that didn't work for me, but you could be more successful, as many are. Your doctor's comment about the OB/GYN really makes me wonder about how competent he is. It's really, really important that you educate yourself so you can be a partner in your care.
    SLE, SJS, vasculitic neuropathy, Degenerative Disc Disease, Chronic Autoimmune Urticaria

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  4. #14
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    hi guys.
    thanks again for more information.
    im so shocked that it doesn't seem like the rheumy is doingas much as he should. i should prob mention that i live in NZ..
    my consult was 15 minutes and i see him again in 6 months, i will admit it hardly seemed enough. but then again, it was the most medical attention, and definitely by far the most competent and understanding, that i have ever had. much better than being constantly told ""your glandular fver is flaring" or, ""you just have a cold"" or, ""you need to go to bed earlier"" so, 8pm is not early enough for a 21 year old??

    jesse, ive definitely had queasiness, but then i had that all day every day anyway, this is only a smidgin worse, definitely nothing i can't cope with cos it's become so normal. i'm taking it at night like you guys said.

    im definitely going to see an ob/gyn in the corridor and ask them about all this! hope they take me seriously..

    Jesse, whats an MTX??

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