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  1. #101
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    Hi Everyone

    I've decided to join this forum as I'm a new Dr M patient and hopefully going to do my first cycle with him in about a months time. My issues are premature ovarian failure (have had four failed egg donor cycles) MTHFR Hetero plus NK cells.

    My last cycle was with the Bondi protocol, that didn't work so have moved to Dr M and he is suggesting for me: higher and longer dosage of prednisolone and clexane, plus neupogen, plus intralipids and then IVIG if I get a BFP.

    I already know Precious Heart from another forum (hi Precious Heart! Think you will recognise who I am) and she put me on to DR M in the first place and has encouraged me to join up here, so here I am!

    I have a question re: MTHFR hetero - I can't work out if I should be a) taking higher dose folic acid (currently taking megafol 5mg), b) methylated folate c)avoiding folate. Does anybody know? The info online is very confusing.

    Also, good to know that I need to figure out this neupogen stuff sooner rather than later, it sound very confusing and I am terrible at maths

  2. The Following User Says Thank You to Legwarmer For This Useful Post:

    PreciousHeart  (31-08-2014)

  3. #102
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    Quote Originally Posted by ladybug14 View Post
    @soclose, the neupogen needles (if you're using the 1ml ones) really are a walk in the park compared to the clexane. I dread those too! I do the clexane in the fat around my bra line-hurts less and it hides the bruises from my FS who I haven't told about the immune drugs! Haha!
    I'm on 1mg Dex and 1.5mg after transfer. How bout you? I haven't stopped eating the past 3 days-not sure what drug has tripped me in to a half starved crazy woman who would kill to get to the fridge! I've been fine the past couple of weeks with the Dex. Transfer is Tues.
    Hope your lining behaves and plumps up nicely.

    Have a good weekend ladies.
    LOL at hiding the clexane bruises. That's hilarious. The things we do!! I think my fs has given up on me. He doesn't agree with what I'm doing with Dr M but just goes along with it anyway lol. I'm on same dose of the dex as you. Best of luck to you for Tuesday. Will be thinking of you!

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    ladybug14  (31-08-2014)

  5. #103
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    How lovely PH and Bertie that you got to meet on the weekend. Very cool

    Welcome legwarmer. We sound a bit similar. I thought donor eggs and then donor embryos would work for me but nope . I only wish I had known about all this immune stuff and Dr M years ago. My protocol sounds a bit the same as yours except I've changed from the pred to the dex. You're in good hands with Dr M

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    MGC Bertie  (31-08-2014)

  7. #104
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    Thank you soclose. Yes we do sound similar, I'm so sorry for all that you have had go through so far, you poor thing. I never did cycles with my own eggs, I doubt I would have gotten anywhere if I did, especially since I am now struggling to get pregnant with donor eggs. Yes, I was thinking donor eggs would work for me as well, as they do for so many, but here we are. I sort of have surrogacy in the back of my mind somewhere, just in case. I can't quite imagine that yet but I suppose if I did 2 cycles with Dr M and had no implantation then that's what I'd look at next. Not being pessimistic, just realistic, as that's how I feel after repeated BFNs, gotta have a back up plan.

    How did you find the neupogen - did you have that on your last protocol with Dr M? Any side effects, advice to give on it?
    Last edited by Legwarmer; 31-08-2014 at 17:57.

  8. #105
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    The surrogacy word has been used a bit at my clinic for me also legwarmer. The cost of it all is just now out of our reach. Good back up plan to have though if you can. I don't think you're being pessimistic at all. When you get to our stage in this journey you just automatically think like that. And to me it is being realistic and thinking ahead.

    I haven't started the neuopgen yet. I start week after next. My vials are at the pharmacy as they are splitting them into the correct dosages for me. Niduhalaine is our resident expert here on neupogen. She has been fantastic helping me with all of my questions!

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    Legwarmer  (31-08-2014)

  10. #106
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    Yes, my FS has mentioned it twice to me now. I hear you. I don't even know how expensive surrogacy is, haven't looked that far into it. And it's certainly no easy path either is it. Well I hope so much that your little frozen embie and your new protocol is the one that works for you soclose .

    Ah yes, I have been reading your posts with Niduhalaine about splitting up vials etc I don't quite understand it all. I have to call Dr M this week as he wants to talk me through the Neupogen - he is so quietly spoken on the phone I am worried I won't understand everything he says. I will go back and read them again when I get to ordering mine.

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    soclose  (01-09-2014)

  12. #107
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    Welcome @Legwarmer. Hope Dr M's protocol does the trick for you.

    From what I can gather/been told the best bet with the folic acid is the methylated form. My naturopath is quite against the 5mg megadose unless you've got NTD risks. I take Thorne Research Prenatal which has all the activated B vits and folic acid. You can get it on iherb.

    Don't stress about the neupogen dosing. Dr M will just tell you to split each vial into a certain number (I've got to get 6 syringes per vial). You just split them into the 1ml diabetic needles. Easy peasy!

    Great you're doing the ivig and neupogen first up with Dr M-hopefully it means you'll have success quickly. Apart from headaches and tiredness for the first few days I've not had bad side effects from the ivig/neupogen.

    Best of luck with it all. All the lovely ladies here will help you out with amazing info if you need it.

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    Legwarmer  (03-09-2014)

  14. #108
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    Well hellooooo Legwarmer!!!!! So glad you've joined us! : )

    MGC Bertie lovely to meet you & chat - all the very very best for your transfer!

    SoClose how are you travelling???

    Nidhulaine how are you??? Haven't heard from you for a while, hope all is well.

    Big hi to everyone else xxx

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    MGC Bertie  (31-08-2014),soclose  (01-09-2014)

  16. #109
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    Welcome Legwarmer, I'm glad you found Dr M as he seems to be our only hope for women with immune issues.

    As for your question regarding folate, You do need extra folate as the gene mutation means your body doesn't break down frolic acid. Your FS will probably prescribe Megafol, but I opted for your option 'b'. I take the broken down form of folic acid, metafolin which I get from iherb in USA.

    I had my appt with Dr M on Friday and besides the issues I already knew, I can add to the list high NKC in the blood and inconclusive if I have PCOS.

    He went through my protocol but as with legwarmer, I have trouble understanding him over the phone. I don't know dosages yet but thes is what he told me i need.

    Metafolin
    Vitamin E
    Pregnancy multi vitamin, not a standard multi like I've been taking due to it having vitamin A
    CQ10
    A diabetic pill twice a day. Although I am healthy in the normal world, it's not clear if I have PCOS or not, so to be on the safe side he has put me on this for even metabolism or something like that, this is the section I couldn't understand him even after I asked him to repeat it.
    Clexane 40mg, 2 weeks before transfer
    Dex 1.5mg. He first said predisilone, but I told him I preferred Dex and he was fine with that.
    2 Intrilipids before transfer. He first said 1 and I questioned if that was enough so he upped it to 2
    Neuprogen a week before transfer. He first said only when I get a BFP, but I said I want to do everything before hand to cover all bases and he was fine with this also.
    IVIG if I get a BFP

    MCG Bertie, I thought of you when I was questioning him about my protocol, but he was quite accommodating with everything. I felt he was being quite conservative with my protocol and I just can't take the chance of going all the way to South Africa and not being on everything possible.

    I have to call him in December so he can explain what I have to do with the Neuprogen. He told me to shop around as it's expensive and suggested chemist warehouse may be the cheapest. I looked it up online and it was $1,385. I then did a search overseas and found it in UK for $600 AUD. I'm just worried that if they put it on ice it won't last all that way, but it's so much cheaper.

  17. The Following 3 Users Say Thank You to Miss Sagi For This Useful Post:

    Legwarmer  (03-09-2014),MGC Bertie  (31-08-2014),soclose  (01-09-2014)

  18. #110
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    For the ladies having clexane issues, the belly is recommended as there are less veins to hit for bleeders. I started with the belly but then after BFP switched to tops of thighs as worried I would puncture uterus. Silly I know. I pretty much get a bleeder every day from the clexane with lots of bruising - but I do find keeping needle depressed in pinch of skin for 30secs helps before releasing and removing. I thought it would hurt less as the days pass but unfort no. But worth it if it helps sustain bub.

    for the ladies with bubs who needed clexane, when did you stop clexane before delivery? Any of you have to have c-section? My locum says stop clexane and baby asipirin at 36wks with c-section at 37.5wks. Worried cos bub still not doing great its too early and a clot could form....

  19. The Following 3 Users Say Thank You to kiwi76 For This Useful Post:

    ladybug14  (31-08-2014),MGC Bertie  (31-08-2014),soclose  (01-09-2014)


 

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