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  1. #341
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    Lite- sorry it was a bfn

    My FS knew of my immune protocol but was not necessarily supportive of it. He didn't think it'd work and even when I got my bfp refused to admit immune meds may have helped. Dr M told me let him take care of immune issues and FS takes care of the ivf protocol side.

    As for weaning off the pred you need to do it slowly one you've been on it for 7+ days as it completely takes over the functioning of your adrenal gland. I stepped down 5 mg/wk with a bfp but I've read with a bfn you can step down faster by 5mg every 3 days. So if on 25, go to 20 for 3 days then 15 for 3 days and so on. Might be worth a call or email to Gwyneth to double check, or ask gp.
    Take care xx

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  3. #342
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    I'm sorry for your results lite, take time for yourself & when the time is right try again...
    xoxo

    Kiwi

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  5. #343
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    Lite - Im so sorry to hear about your negative result!
    Its so hard... Makes me a bit nervous since im also useing IVIg.
    Its great that you do have embies in the freezer! I think you are doing the rigth thing by looking else were. Really hope the dr will find the rigth drug protacoll for you! Big hugs!!!
    Bella is rigth about the steroids.

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  7. #344
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    Kiwi - I have been away for the past week at a health retreat trying to get myself right in the head before my next cycle after this last loss so I didn't know your news until now. There was no mobile or internet at the health retreat so I have just done a lot of bubhub reading and I just cant say how very very very sorry I am for you and your husband. It just broke my heart to hear what you are going through - no one in the world should be faced with that - it is beyond cruel and I cant imagine the pain you must feel. Its just so hard to comprehend. I'm sorry I didn't write sooner but I truly didn't know. I will be thinking of you, you are so strong - I don't think I have any other words. I just wanted you to know that I will be praying for the chance of a miracle for you all on Monday.

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  9. #345
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    Lite - also sorry about your bfn, good you have frozens to focus on. To quickly answer your question my fs (goldcoast) isn't supportive of Dr M but does believe in immune issues himself - does intralipid and 10mg pred - think he would not be impressed if he knew I was taking 25mg pred under DR M advice, so don't really know about co-managment. I will write other personals later, need to go spend some time with my husband after not seeing him for a week and need a hug now. Kiwi - I hope you are doing OK x

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  11. #346
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    Litefantastic - I am so sorry about your BFN. It seems so crazy that you know you had perfect embryos and yet the IVIG still wasn't enough. This really doesn't give me much hope for my own cycle as you are the only other person on this thread that I am aware of that has been recommended the same treatment by Dr M as me, IVIG then LIT. I think I have mentioned before that I also get achy joint pains following embryo transfer and have always thought this is my immune system at work. I hope you find a good immune friendly FS who will be happy to work in with Dr M. Thinking of you and your DH

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  13. #347
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    Lite, I'm so sorry it hasn't worked this time So glad you have those frosties to focus on and plan ahead for. I think it always helps having your next plan of attack in the works, even while taking the time you need to just breath and put IVF aside for a bit. Bella is right on the steroids, I had to break down by 1/2 tablet sometimes as it effected me so much (so 2.5mg), but you might fare better. If you need time off to organize other treatments it's probably good to give your body a break from the pred.

    Dr m talked to me about neupogen & humira too (at my suggestion) if needed but said I would need Chicago bloods for that, but I think you have done those already? I will be interested to see what he suggests and what the LIT protocol involves.
    As far as fs's go with agreeing with immune protocol, I think you need to get pretty lucky to get one onboard in a big way, but a lot are seeming to come around at least a little. I was with sandy's fs til this last successful attempt, lovely doc who was happy to do intralipid & low dose pred & clexane, but not sure whether he would have been too thrilled with my current protocol (which got us our bfp! So...). We are very lucky to have moved on with a very open minded fs, while he doesn't really know whether the immune stuff got us over line in end, he was willing to work with it and was just happy to see us get pregnant. As far as collaboration, the 2 docs never talked - don't think any if us pay dr m enough for that! Lol...but I would just say to fs - I'll let dr m know all this protocol you want me on, then I'd come back with dr m's suggestions and we would go from there. I was the go between. And like Bella said, through our complications with the rupture etc we've had to make the decision to keep fs in charge of IVF/preg and dr m in charge of immune stuff (thanks Bella for your words of wisdom during that stressful time😘), as they don't always agree on all points. If dr m didn't think I needed something, but it wasn't going to harm, then I took fs advice (eg. have upped to 4 x 400 pessaries since rupture, eventhough dr m said 3 was enough). Also fs reccommended feldene this cycle, again dr m said you don't need it but decision is up to you, so we took it anyway.
    Luckily for us our fs had worked with dr m's patients before, and realised getting anything in writing out of dr m on protocol is like getting blood out if a stone cause he is so busy! So i just needed to trust what gwenyth says re. dosages and call with results, and relay to fs. Fs knew dr m would put me on 25mg pred & 60mg clexane due to my history, he was concerned with the increase by dr m to 35mg pred upon bfp and I got the whole risks talk, but told ultimately my choice. I said as long as it doesn't harm baby I'm good, and fs said it's more about harm to you, your bones, adrenal recovery after pregnancy etc...and hey I don't think any of us would be going down this path without realising our health may be compromised. I think the very high IVF stims etc are scarier than that, but that's me.
    Anyway, long post from me...really hope you find that balance of what your body needs Lite and rest up in your time off🌷🌷🌷

    Actually hope just reminded me above, what is the achy joints thing you guys get? Not sure what immune issue brings this on, can someone please explain that to me? I have had achy joints in past but never attributed it to anything immune. Thanks
    Last edited by lissyloulou; 15-06-2013 at 18:35.

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  15. #348
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    Kiwi, thinking of you all and my heart is still sending so much love and solace to you, lil chilli and hubby in this hardest time of your lives xxxxxxxx For you to log on and give support to lite and the cycle not working while going through what you are shows what an amazingly compassionate and beautiful woman you are. You are a wonderful mummy to your lil chilli already and will make the best decision possible for your baby, and your future babies will be the luckiest kids in the world to have you as their mum (and your hubby as dad). I can't put enough love, support, and respect on this screen that I have for you xxxxxxxxx

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  17. #349
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    Quote Originally Posted by lissyloulou View Post
    Kiwi, thinking of you all and my heart is still sending so much love and solace to you, lil chilli and hubby in this hardest time of your lives xxxxxxxx For you to log on and give support to lite and the cycle not working while going through what you are shows what an amazingly compassionate and beautiful woman you are. You are a wonderful mummy to your lil chilli already and will make the best decision possible for your baby, and your future babies will be the luckiest kids in the world to have you as their mum (and your hubby as dad). I can't put enough love, support, and respect on this screen that I have for you xxxxxxxxx
    ^^^ This, Kiwi.

    Thinking of you x

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  19. #350
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    Kiwi, that is shattering news, no judgement from here. I echo all the supportive messages the others have written. You need to look after yourself as well.
    Lite: so sorry to hear your news. Agreed, you need step down from the prednisolone slowly. It's so difficult to deal with a negative result when there have been so many positives on this thread which give you so much hope with this protocol.
    Lots of hugs, flowers.

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