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Feel Alone

Discussion in 'Living with lupus' started by joy1630, Dec 11, 2011.

  1. joy1630

    joy1630 Registered

    I don't know where to turn so I have made my first post in hope that someone can offer some advice as I have often found answers and help on existing posts. I'm 26 and taking Methotrexate & prednisolone for SLE that I have been diagnosed with since 2006.

    Me & my husband now want to try and start a family, we saw our rheumatologist consultant about a month ago and raised the topic. We have wanted to start a family for over a year but took are time to fully research all the risks and implications it would have on myself and a baby. My consultant seems quite reluctant to change my medication. I have positive Anit-Ro and Anti-La antibodies and he did a further blood test for some type of enzymes (which came back very low, no idea what this actually was for) but the specialist nurse that rang me a week ago said this was not good and definitely could not change my medication at this time. She wants to make an appointment to see me but I am still waiting for this to come through.

    I really feel that doctors are determining whether or not we can ever start a family, I understand about seeking and considering medical advice but until I try changing my medication (as I know not to get pregnant on methotrexate & my consultant told me my only option is azathioprine) we will never know if it is suitable to control my lupus and therefore be able to try to get pregnant?

    Has anyone else been through a similar thing? Feel very low at this time, and feel like we may not even be able to have children at all :sad:
  2. Jessica1

    Jessica1 Moderator

    Hi there Joy1630
    I'm afraid I can't offer you advice on your situation as I have not experienced it but I wanted to welcome you to the site and reassure you that others will be along who can understand how you're feeling. We're all here to support each other whatever we're going through so you've found the right place. There are members here who have had children following a diagnosis, so hang on in there and the best of luck to you and your husband.
  3. joy1630

    joy1630 Registered

    Thanks very much Jessica1, its the first time i've posted on a lupus forum because I was a bit apprehensive that if I started pouring my heart out I might not stop, but I realise there are people out there that can offer advice...I just need to ask :)
  4. Jessbryan

    Jessbryan Registered

    Hi Joy1630,

    I can't offer a lot of advice to you as I have not fully researched into this myself. The little bit of experience i have had with this is my last visit with my Rheumy, I'm getting married in just over a year and he when I mentioned this of course he presumed kids would be following soon after, myself and my fiance want to start trying for children pretty much right away as you know yourself with lupus anything could happen year in year out to prevent you doing what you want to do. Plus the doc sees some sort of kidney invovlement in my future so pretty much we may start planning a family fairly soon.

    All I can say is the doc told me that first of all I need to be out of a flare before we should even consider planning on getting pregnant, then he said he will have to do tests (I presume these are the same tests that you had done) to see if all is ok then if all goes well he said maybe take me off my meds three months before we start trying!! he said there is lots of planning invovled and it sounds like you have really looked into all of this.

    I know this prob doesn't help but I do understand as I also really want to have children and I feel a bit distraught at times that it will be completely up to doctor's and whether or not I'm flaring...it's all so out of our control and it should be the one thing we are allowed to control.

    I really hope it all works out for you and don't feel so alone...this is the best place to come for support! xx
  5. cally

    cally Registered


    I'm guessing the dr was testing to see if you were suitable to be put on azathioprine as you have to have a blood test I think it is called a TMPT test if I remember correctly. If your enzyme levels are too low then you are not suitable for the drug.

    I hope you can contact your rheumy and get some more info, or the appointment with the rheumy nurse comes through soon. Don't lose hope, plenty people have managed to have successful pregnancies with SLE, it just takes time and planning I believe.

  6. joy1630

    joy1630 Registered

    Jessbryan, thanks for your response, it's nice to hear from you and that you are in a similar situation. We knew we wanted to start a family soon after getting married too and my Lupus has been quite under control for the last couple of years. We had brought the subject up at my 2010 annual appointment just to put it in my consultants mind (I find him quite hard to approach/talk to anyway), he said he wanted to see a 'baby plan' of how we would even begin cope with raising a child let alone coping with a pregnancy, this kinda blew my mind with how he spoke to me. I know my limitations and after caring for friends babies at times, know cetain little things I would change to make things easier (high changing table so don't have to bend down so much etc).
    So when we went along to my annual appoinment in 2011 (major file & 'baby plan' in hand), we thought it would be quite straight forward, change medication, see how i react to it, if all is okay - start trying. But he seems so reluctant, I just feel he has our future in his hands.

    Thank you very much cally, that helps so much, my appointment has come through to see a specialist nurse to talk things through and its great to go knowing what the test might have been and research it before hand, im one for researching! I think I drive my husband crazy at times with how many books, internet print off's and files I have created, lol! I've also gone into major contacting mode, emailing specialist contacts at hospitals for insight into Lupus pregnancy & medications.

    My friend is a dance teacher and I went to her Christmas show on Sunday to help out and I was sobbing in the side lines just looking at all of the kids faces looking for their parents, and also the parents looking back so proud. I just want the same thing for us, it hard to take after battling lupus and now another battle on my hands to have a family.

    Thank you all x
  7. Jessbryan

    Jessbryan Registered

    A baby plan?? I can't believe he asked you to prepare that!! And then to tell you no!! Do you have any organ involvement if you don't mind me asking?? I'm sure us lupies are just as capable of being great parents as anybody else!!
  8. joy1630

    joy1630 Registered

    My thoughts exactly, we are no different to any other prospective parents, just have a few additional things to consider and be aware of. I am so frustrated!

    I'm not aware of any organ involvement other than my liver function tests previously fluctuate a bit (but as far as I was aware this was due to the medications, but I havn't been told this is an issue since first trying to get my medication right way back in the beginning), my main symptoms are fatigue and joint and muscle pain.
  9. Rozie

    Rozie Registered

    ummmm.... i am not suggesting you in any way do this at all but supposing you had gotten pregnant through an unplanned pregnancy your doctor would have to help you weigh up your options and adjust your medications accordingly. The problem is that you and your husband have done your research and you know the complications involved but i do feel you should feel like this is your choice and that whatever yo decide to do your doctor should be saying that medically it could be complicated / risky (if you have any risks associated - like hughes etc) but we will try and support you and care for you the best we can. Dont get me wrong i absolutely admire you for the care you are taking in doing it this way but it is your choice at the end of the day. x
  10. Jessbryan

    Jessbryan Registered

    Yep you're the same as me, joints and muscle pain! I'm no plaq, pred and Imuran but he said he would like me off my tabs before I got pregnant! he's not being very supportive of you at all! Rozie mentioned the test there, the test for Hughes Syndrome, that's what he said he'd test me for prior. I think Rozie is right what would he do if you just happened to get pregnant, there'd be no stupid baby plans then would there, he'd have to help you and start sorting out your meds..that's very frustrating for you! how long are you with this rheumy for??? Would you consider a new Rheumy!!!
  11. joy1630

    joy1630 Registered

    Jessbryan, how to you find Plaquinil? I rang my specialist nurse last night and asked about Plaquinil and said this is a very common/popular Lupus drug and why has it not been mentioned/ is it an option for me? Waiting to hear back now.

    Rozie, I'd said that to my husband, what if I got pregnant they would surely have to do something. The weirdest thing was that my consultant said it would be ok to still be on Methotrexate and pregnant?!....which contradicts everything I have read or heard, I mean Methotrexate is even used in abortions/miscarriages.

    The test for 'sticky blood' which is a syptom of Hughes syndrome & can cause miscarriages, my consultant said he wouldn't do it unless I started having problems e.g miscarriages. The more I write down what he has said to me, the more I do not think I am getting the right care! Eeek!
  12. Jessbryan

    Jessbryan Registered

    I haven't had any bad side effects with plaq!! It's a very common one from all I've read! I can't believe he said it would be ok to get pregnant on the methotrexate! My doc couldn't stress how important NOT getting pregnant while I'm on all my tabs! In fact I got a lecture the other day about being extra careful!! So you have to go thru a traumatic miscarriage before he gives you a simple test for sticky blood! Sorry if Im giving out here!! He seems so dismissive of this!!
  13. "Not now" doesn't mean never. Stabilizing your disease is foremost at the moment. lt sounds like that is not the case at present.

    A new rheumy sounds like a good move if this one thinks that mtx is not contraindicated in pregnancy. He seems to be concentrating on treating your disease and not sympathetic to your emotional plight. ln some respects he's right about the burden of pregnancy and child care challenges you face. Consider carefully. Don't let your emotions drive all. Just carrying this disease is emotionally wearing.

  14. joy1630

    joy1630 Registered

    Jessbryan, he asked what my questions and info i had, i said obviously i need to change my meds as methotrexate was a big NO NO while pregnant, and his reponse was well no it can be ok?! eh?! I don't know why he wouldn't do the test for sticky blood, as obviously to lose a baby would be emotionally and physically stressfull and sad, and all of which could cause a major flare.

    Limpin A. Long, as far as I know my Lupus has been controlled for the last few years which is why me & my husband have thought about starting a family now. The emzymes that were tested a couple of weeks ago to be able to move to azathoropine I have since found out were to do with my ability to resist the toxicity of the drug. E.g my enzymes are low which would mean its not the best medication to move to. But not that the disease is active etc, just my ability to tolerate the meds. We are quite practical and always check things fully before doing anything, but yes it is easy to get wrapped up in the emotion of wanting to start a family and stress/emotion I have learnt definitly can set me off with a flare so i'm doing my best to try and keep level headed :)
  15. mooks

    mooks Registered

    Hello Joy,

    I am one of those people on this site that has had a successful pregnancy despite having SLE! And its not "mild" either. I really would love to chat with you if you want to you can PM me. I now have the most wonderful 14 month old daughter, Id love to share my experience with you and help answer any questions you might have. I was on methotrexate and rituximab prior to my pregnancy but during pregnancy controlled my lupus with just plaquenil and steroids (quite high dose) please do message me x :love:
  16. mooks

    mooks Registered

    oh and ive just seen the second page... methotrexate is the drug they use to induce spontaneous abortion in ectopic pregnancies..it is NOT to be taken even if their is a "chance" of becoming pregnant!!!! you need a new rheumy and a high risk obstetrician with a special interest in lupus!

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