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Mummies with Lupus

Discussion in 'Year 2017 Mums' started by caramel1988, Jul 30, 2018.

  1. caramel1988

    caramel1988 New Member

    hi! just wondering if there are any mummies diagnosed with Lupus out here?
     


  2. Hi hi, I am not diagnosed, but I do have a positive ANA.
     
  3. caramel1988

    caramel1988 New Member

    hi there! are u currently seeing a doctor?
     
  4. Yes, I’m seeing Dr Vasoo at mt E. I was tested for many things all came back negative except ANA, so I really don’t know what can be concluded, and whether it is advisable for me to try to conceive. I had a miscarriage in jan 2019, which was also when I discovered my ANA is positive because I did blood test for rheumatoid arthritis when my joints hurt.
     
  5. caramel1988

    caramel1988 New Member

    i’m also seeing Dr Vasoo for lupus. i was diagnosed in July 2018 and started medication in Aug. my lupus symptoms started 3 months post partum with a facial rash, and subsequently i had joint pains in my fingers as well. prior to the diagnosis, i had always been well and my pregnancy was also uncomplicated. my ANA was positive at 1:640.

    sorry to hear about your MC. did Dr Sheila advise you about TTC, upon viewing your results?
     
  6. I gave birth in July 2017, and previously in 2010 (previous marriage). Both normal and uncomplicated as well. I had joint pain last Dec, right around about 1.5 years post partum. My ANA is 1:320 (at ttsh), then when tested at mount e it was negative but when done manually there, it was 1:120. Same sample different results.
    Is your diagnosis based on symptoms or tests? Are you also trying for another baby? My Husband and I are trying, we are quite demoralised, also because I’m already 39 this year, time isn’t on our side, and now with my health condition, not knowing exactly what is wrong with me, really making me quite depressed...
    Dr Sheila at first told me she doesn’t think it’s related, the miscarriage so she said no harm to try again... but that was because my ANA test with her came back negative. Now that the retest came back positive, I don’t know what she will advice. I’m seeing her tomorrow
     
  7. caramel1988

    caramel1988 New Member

    strange that your ANA results can differ so much..

    my diagnosis was based on a series of blood tests. i was then put on Plaquenil and prednisolone, but now only taking Plaquenil.

    not trying for another baby now but may consider in the future. i am supposed to take a blood test that tests for blood clotting before i decide to TTC.

    hope all turns out well for your appt tmr!
     
  8. Actually when I consulted Dr Sheila, it was more to find out why I have a positive ANA, and coincidentally I had a miscarriage so we wanted to know if it was linked or it was due to my age. I’m going to ask her regarding blood tests to further test if it is advisable for me to TTC.

    You’re young, and with doctor’s advise I’m sure u can TTC with little to worry about.
     
  9. caramel1988

    caramel1988 New Member

    hopefully so! may you be able to TTC successfully soon too.
     
    Blessed daughter likes this.
  10. sigh... my ANA at TTSH was actually 640... at mount E is 160. I will repeat the tests in 3 months. Meanwhile, Dr Sheila says she thinks it’s a post pregnancy rheumatic problem but cannot conclude to be an autoimmune problem as yet. I’m feeling so sian.... as for TTC, she thinks to wait a few more cycles to feel better then try. I’ll listen to her. She’s very nice and very assuring though
     
  11. caramel1988

    caramel1988 New Member

    that must be very demoralising for u, esp when u want to have another baby soon..

    are u put on any medications?
     
  12. Not really medication. She gave me a supplement for the pain in my joints. Yes it’s very demoralizing, my Husband asked her what’s our next move, she said to wait a few cycles to try because she thinks I need to recover from post pregnancy rheumatic Attack. My latest blood results don’t show anything out of range, except for the ANA and a slight Low on the RBC. And I’m going for ultrasound for my hand joint to see if there’s inflammation going on.

    Your symptoms are joint pains and rashes, after the steroids and medication, do you feel back to normal? I’m really feeling depressed cause it’s been so Long that I just don’t feel like my normal self.
     
  13. caramel1988

    caramel1988 New Member

    ya i feel ok now, the steroids work very fast in alleviating the joint pain, so i felt better after a couple of days of starting the meds. now no longer on steroids, am taking plaquenil and vitamin d.
    hope you feel better soon. dr sheila not able to give you steroids or anti inflammatory meds to relieve the pain?
     
  14. That’s great that you’re feeling better! So you don’t have to take steroids anymore or when pain comes then have to take again? Yours is considered mild?

    She didn’t start me on any steroids because no diagnosis, and my joints aren’t swollen. But I’m going for ultrasound to make sure there is or there isn’t inflammation. If there is, then I will have to go back to see her sooner. My knees, fingers, lower back all ache on and off... and my chest is tight (no idea if related). I’m on Atarex, the ginger/turmeric supplement. Previously she prescribed Arcoxia anti-inflammatory and Lyrica, for nerve discomfort. My symptoms are all over the place and all sorts of muscle ache/ twitching, but till now no diagnosis.
     
  15. caramel1988

    caramel1988 New Member

    dr sheila said mine was early lupus. i had to take steroids cos my WBC was very low. i don’t have to take steroids anymore for now.
    oh dear u sound like u are in quite a lot of discomfort. hopefully the ultrasound can shed some light on your condition.
    are u a working mum?
     
  16. I guess it was good that you caught it early, chances of it flaring is low. My RBC is just below the normal low, she didn’t seem to think it mattered. Ya, I feel weak and achy everywhere, a little hard to function. I’m hoping it’s really post pregnancy rheumatism and that it will get better. I hope not to be on medication long term.
    Yup I’m working full time, and very little energy left when I get home, it’s worse these days...
     
  17. caramel1988

    caramel1988 New Member

    sounds like your blood test results are not too bad which is a good thing. ya maybe it’s just a temporary condition.

    try to rest whenever u can, and do more relaxing things. jiayou!
     
  18. D
    Dr Sheila will see me in 3 months. I will redo some of the blood tests then. I’m the anxious type, so I really don’t know if I can make it to wait 3 months, if the discomfort continues on.
    Your diagnosis was pretty straight forward and fast, and early detection actually helps treatment work much faster and better.
    I also hope this is a temporary thing, but the ANA is there.... sigh...
     
  19. caramel1988

    caramel1988 New Member

    ahh seek a second opinion with another doc? i’m sure there are some other good rheumatologists around. dr sheila’s wait time is quite long cos of her many patients.
    mine took quite a lot of blood tests and even a skin biopsy to confirm the diagnosis. it was hard to accept at first esp when i had been healthy all along (i hardly even had colds or cough), but now i’ve adjusted to the fact that this is a condition i have to live with, and that i need to be on long term meds.
     
  20. I have an appointment with TTSH actually, but it’s in May, even longer waiting time. That’s why I went to see Dr Sheila. I did 2 rounds of different blood tests with Dr Sheila, each time getting Super anxious over results.
    I understand how you feel, I was very defeated when I found out about my ANA, although no diagnosis, the miscarriage seemed to be related, and till now I still can’t be sure, but likely there’s something wrong.
    We all want to be healthy especially when we are still young, it’s so hard to accept this. *pat pat* *hugs* I’m also crossing fingers, hoping there’s some sort of mistake etc, I’m in denial, and I see all my friends happily healthily having babies also don’t know why I’m getting this.
     
  21. caramel1988

    caramel1988 New Member

    yea i certainly didn’t expect the diagnosis to be lupus. i even went to a dermatologist at first cos i thought the facial rash was some post partum rash. quite a rude shock for me when the blood tests came back abnormal.

    keeping my fingers crossed for u too, and hope everything turns out well! it’s assuring that dr sheila didn’t have major concerns about your blood test results, unlike mine, which was quite bad, so i had to be put on steroids immediately that time.
     
  22. Actually I had quite a Long journey, since last September. My eyelid twitched for a good 6 mths, that was the start of it all. Very stressful.

    How often do you need to see Dr Sheila now? I need to do blood test every time I see her.
     
  23. caramel1988

    caramel1988 New Member

    im seeing her every 3 months or so now. also need to do blood test before seeing her. just did blood test couple of days ago and will be seeing her mid march.

    you have a restful weekend!
     
  24. Hope your blood test results are favourable! Post partum hormones can cause havoc in the body, hopefully your body has settled down and your bloods are stable.

    Yup u have a great weekend too!
     
    caramel1988 likes this.
  25. I went for the ultrasound of the hand and the radiologist didn’t find inflammation, so once again, it’s non specific... however, I’m getting ulcers at the top of my mouth. Getting abit terrified now. I’m also down with something, throat hurts terribly and sneezing. And my joints are still a little achy. It’s been so Long since I’ve felt ‘normal’...
     
  26. caramel1988

    caramel1988 New Member

    oh good that there’s no inflammation. could it be that u are coming down with a cold? go see a gp to get some meds?
     
  27. Ya it seems like I’m coming down with something.
    Did you have fatigue, ulcers, chest pains etc prior to your diagnosis? I’m very anxious about how I’m feeling because it’s not feeling so normal but I don’t know if it’s Aging or something is brewing.
     
  28. caramel1988

    caramel1988 New Member

    i didn’t have these pains but i rmb feeling very anxious and fearful too. anxiety can cause chest pains etc so try to do some relaxing activities and see if it goes away? do meditation, have a massage, go for a quick getaway etc
     
  29. Yes, the anxiety and fear can be dilapidating.. it is driving me nuts and my hubby is feeling my anxiety. He says I haven’t laughed or smiled for more than half a year ever since it all started.
    I’m on mc today, I have a bad throAt infection. I’m hoping it all goes away after my course of antibiotics.
    I hope your blood test comes out good and you’re cleared of your diagnosis. Going to a good doctor is good and definitely preferred, but not needing to go to a doctor is better. *pray for healing*
     
  30. caramel1988

    caramel1988 New Member

    i’m sorry to hear that life has been very upsetting for you because of your health. sounds very difficult to get by day after day when anxiety takes over you.
    thanks for your well wishes. i can’t be cured of lupus, can only hope that it remains in remission, and one day perhaps i don’t have to be on any meds anymore.
    when i was younger i took health for granted. it’s only when things happen then i realised the true value of good health. it’s a good wake up call, i guess.
    i’m hoping your health improves soon and you will feel back to normal again. do rest well, and think of positive things as much as you can, such as your beautiful family etc.
     
  31. I also took my health for granted in younger days. Even after two births, I took my third pregnancy for granted. The miscarriage was a wake up call that not everything will go smoothly; it could also be due to my age.
    My all over body twitching is a strange strange symptom, and what is it a symptom of, I also don’t know.
    I hope you stay in remission for a long time, and no more medication needed. :)
     
    caramel1988 likes this.
  32. Hi Caramel, how was your check up? Good I hope?
     
  33. caramel1988

    caramel1988 New Member

    hi there! thanks for remembering and checking on me :) dr sheila said the results are ok, just that the anti-Ro is still very high. she said it won’t go away, but all other markers are fine :)

    how about you? how have you been feeling?
     
  34. That’s good to hear! :)I guess as long as its all under control and Dr Sheila is in control it’s all good. Me? Still aching in my joints lately. No conclusion, just hope and pray that it goes away. I realised we need to be very careful with any antibiotics. I’ve been on a course of antibiotics lately, and felt terrible after that. :confused:Hopefully all is well with us!
     
  35. caramel1988

    caramel1988 New Member

    when’s your next appointment with dr sheila? hopefully the joint pain will be gone by then. must be quite unsettling to deal with it when there’s no definite answers as to why you are feeling this way.
    ya antibiotics always make my stomach sick. esp Augmentin! hate that stuff haha.
     
  36. Exactly, it’s augmentin! Sickening, take already, diarrhoea and funny reactions.
    My appointment is early June, still so Long to go. Quite stressful. I’ve got mostly not so good days and bad days. Don’t have painless days. The joint pains come on and off. Ultrasound of my hand doesn’t show inflammation, so really no idea what’s happening. o_O
     
  37. caramel1988

    caramel1988 New Member

    so the supplement u got didn’t seem to help? hmm ever thought of seeking a second opinion from another doctor or something?
     
  38. The supplement may or may not have helped, it’s hard to say, coz maybe without it, the joints would have hurt more... also can’t determine. I thought of going to seek second opinion but I think it’s gonna be the same, redo blood test to see if anything changed. I just saw my neurologist whom I saw from last year because of my twitches, he said ANA alone cannot conclude anything. To be honest I’m afraid, I feel many changes to my body, just don’t feel like before, but it’s too abrupt for Aging as well... frustrating Lor.
     
  39. sarah92

    sarah92 Member


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