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  1. #931
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    @Patience86 have you seen dr m or another immune reproductive specialist? I'm not sure but I don't think clexane and aspirin alone Wd help. They thin the blood, whereas the prednisolone lowers the immune. Have you looked into neupogen or ivig or intralipids? They all act on the immune system so might be able to help. I really think you need to see an immune dr that specializes in pregnancy as well as immune stuff.

    Good luck and I am so sorry for your loss.

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    Hi @Chiefsgirl I am not sure who dr m is or what neupogen ivig or intralipids are (bit I will look them up)... I am in perth so not sure what is available. The other problem is that fertility treatment is a push for us financially ... so frustrated.

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    Quote Originally Posted by Patience86 View Post
    Hi @Chiefsgirl I am not sure who dr m is or what neupogen ivig or intralipids are (bit I will look them up)... I am in perth so not sure what is available. The other problem is that fertility treatment is a push for us financially ... so frustrated.
    He is a reproductive immunologist that a lot of us see in sydney. I think @bbhope is based in Perth and might be able to help with local Drs. It might be an idea to get a book called is your body baby friendly. It talks about how your immune system affects your ability to have a baby. It also talks about the treatments and what they are for. It's really important to get tested before doing ivf as otherwise your body will just kill off the baby and your money is wasted.

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    Patience, I second everything Chiefsgirl has said. You need correct testing to see what immune issues you have before trying to work out a treatment plan. I have appts with Dr M by phone as I'm in Adelaide and he's in Sydney. Still, I hear you on the cost, IVF is dear enough, then put immune issues on top and it majes it worse.

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    Thank you @Chiefsgirl and @MissSagi the cost is one of our main concerns. I will get that book though..sounds very helpful.

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    Patience.... Dr M also does use Dexmethsane instead of Prednisolone, but it can only be used for the first 9 weeks as it crosses the placenta, and then he changes to Prednisolone, but perhaps he may have another plan to fit your case. And I agree with the other suggestions about Intrallipids and Ivig infusions, and Neupogen injections.

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    @Patience86: i read that you have rare immune disease. DrM would be a good person to start to get all the testing done. Unfortunately, you don't get medicare rebate with phone consult. But no point of pouring more $ into IVF if you can't keep the bub. If DrM only requires you to have IVIG and intralipid, i can refer you to an OB here in Perth. With rare case, another OB will be very interested in taking your case once you get your BFP. He also operates out of public hospital which will save you a LOT of $. Too bad, my case is too easy for him and don't qualify to see him as a priv patient.

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    Thank you so much @bbhope and all the other ladies for all the info. I am not doing IVF at this stage. FS says there isn't much point as I actually get pregnant easily...it is just keeping it. His treatment protocol so far is just medicated cycles...includes ovulation induction, progesterone, clexane, asprin but will have this confirmed in a few weeks when I go to my next appointment. I have never had any form of fertility treatment before with ds1 (although I am almost positive I had my autoimmune disease back then too) this is all new to me.

    Saw my immunologist today who is highly knowledgable in my disease (most specialists haven't heard of it!) and he told me that there is no link between my specific illness and miscarriage. But it may be a result of the compromised immune system in general. Or it may be something independent.

    I have looked into all the things you lovely ladies have suggested...Just a few questions...can I just call Dr. M up for an appointment or do I need a referral from my FS/GP?

    Are treatments such as Ivig/ intralipids available in Perth or do I need to fly to Sydney?

    Can I get all the testing required by Dr. M done in Perth?

    Can I ask my FS to test for NK cells if it hasn't been done before. Will that suggestion be pooh poohed. Are there any other tests I can ask for?

  9. #939
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    Patience... I know you say that your immunologist says that your immune issue isn't related to miscarriage, but I've heard that time and time again from various specialists and others on here, and then when they went to Dr M, he's really doing "out of the box" stuff. Well, many of these meds have been used in the US for over 10 years, but it's only the last two years that it's becoming more and more known here.

    You will need a referral from your GP, though you can ring and get the appointment booked in, and then in the meantime get the referral. Dr M will run more tests than just the NKCs, such as Anti-Nuclear Antibodies (ANAs), HLA matches, DQ Alpha, etc depending what your issues are.

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    @Patience86 if you are only doing oh consults without being able to claim from Medicare then you can just call him to make a ph appt. you only need the gp referral if you are going to claim the appt from Medicare.

    He will then send you for blood tests himself and will then give you a plan. Then depending on what he prescribed you can contact bbhopes dr in Perth to book in for treatment. Intralipids, neupogen and ivig are very expensive. But prednisolone, clexane etc are covered by Medicare and not too much $$. Those of us that do ivf on top end up spending $$$$$!


 

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