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  1. #61
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    Helen you poor girl. What a long journey for you.
    I have been trawling through Dr Braverman's site this afternoon - I am not sure if you have checked it out. Goodness I wish that I was in the US! It would be so much easier and less worry then.
    From reading Dr Braverman - I was thinking of asking Dr M to add in an intralipid for me between IVIG infusions just as an extra precaution. I have high TNF alpha and CD56. Anything to quell that inflammation.
    Sigh

  2. #62
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    helenmac is offline After 3 yrs of tcc I've got a BFP!
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    Festivalgirl - Yes I've been reading heaps from Dr. Bravemans site too. My thoughts exactly I wish I could just pop over to the USA to have my treatment! Yeah right, with what money!!

    In regards to adding an intrapilid, doesn't it just do the same thing as IVIg? I was under the impression that it's just a milder form but does the same thing by reducing the high nk cells in the blood. How high is your TNFa? Wishing you the best.

  3. #63
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    Hi everyone! Haven't been on this for a while and so many new faces!

    Helen, I have read through all your posts and although I haven't done much research on Humira but looks like it is a long draw process. Why do you have to have B/t tested every two week? is that to make sure Humria is working? I hope the two weeks fly by and you get your plan sorted with Dr. M in your next appt.

    Festivegirl, I had an similar impression about intrapilid with Helen, I thought it is just a synthetic version of IVIg and cost wise its a bit cheaper. are there any benefit to have both?

    My appt with Dr. M about my b/t result is tomorrow, so I will have more idea on what I need to do next. But Gwyneth said it will be most likely for me to do a biopsy next to know more. So still a bit far away for me to foresee any treatment plan yet at this stage. I guess I have made peace to the fact that I can't control the cycle timing and waiting is part of the game. I will just have to accept whenever will be will be....I guess we are all in the same boat.

    I will let you know how the appt went tomorrow...

    Love to all xx

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  5. #64
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    Good luck with your appointment tomorrow Earthpower - I hope that you get lots of answers and an idea of a treatment plan/timing at least from Dr M.

    I have been driving myself mad reading American posts and so many women seem to be having IVIG every fortnight (as opposed to every month as Dr M has prescribed for me). I was just wondering if I could add something in a little cheaper - like intralipids - to help control my TNF and CD56 in between the IVIG. But I should really just be calm as my husband says stop torturing myself with what ifs.

    I hope that everyone is travelling along well especially those who are cycling and those waiting for results. And the pregnant ones of course as well.

    Good luck to all. I start my stimulated cycle on the weekend. Clexane and IVIG here I come!

  6. #65
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    helenmac is offline After 3 yrs of tcc I've got a BFP!
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    Earthpower - Good luck with your apointment with Dr. M tomorrow. Humira is a TNF-a blocker and reduces inflamation and is really the only answer to very high levels of CD57. Regular blood tests are required to measure the TNFa levels to ensure they are lowered, they like to see them at 30 before IVF. Some women can flare on humira so another course is required which can then lower their levels.

    Festivalgirl - You sound like me. I'm always reading the yahoo immunology board and I love fertility friends as there is a great thread on Humira/IVIG/Intripilids. Are you saying that Dr. M recommends you have a IVIG EVERY month if there is a BFP? What a costly excercise. I wonder how frequently I'll have to have it? It's so unfair that everything is so expensive. I have to include flights to cape town as well on top of it all!!

    How is everyone else going??

  7. #66
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    Hi All

    Well my BT was due tomorrow but unfortunately AF decided to pay a visit today...So here I am again confused, disheartened, angry, frustrated and really just over it...Back to square one - next steps seeing Dr M.....I did have my bloods done with him a few months ago but unsure what diff results he got compared to Dr S. Looks like I will be phoning him to touch base and I guess he will book me in for a hysteroscopy. I know I have high levels of CD57 from my other test looking at my results they were at 50/mm2 (very high) & my CD56+ were 21.9%(very high) - not sure what you other ladies were in comparison...
    I guess my last hope is Dr M....I think I will take a couple of months off to unwind and get back some me and hubby time then will try again Nov/Dec. I think this will be my last shot which I will try and cover all bases by even doing PGD if that along with Dr M treatment doesnt work then I guess it just wasnt meant to be, at least I can say I tried....
    I will continue to follow as I would love to see some real success here - wishing you all lots of xoxo

  8. #67
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    Dear Kiwi,
    I was so sorry to read your sad news. We have all been there and know how dreadful and awful this time is. No one deserves all this sorrow and heartbreak. It is so unfair.
    It sounds like through all this sadness you have a plan. And it is a good, sensible one.
    Helen has high CD57 so hopefully her experience with Dr M will give you some guidance before you try again in a few months time.
    I am starting a stimulated cycle today - so will let you know all about IVIG treatment if that helps at all. In my case I am using it for high TNF alpha and CD56 of 81%.
    Be gentle on yourself over the next few days. You have a lot of support from all of us here.
    Festivalgirl

  9. #68
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    Hi ladies! I've been watching this thread over the last month or so!!

    *preg mentioned*

    I know how difficult dealing with immunes is but now am a strong believer that they do have a massive impact on conception - there is no doubting it. So good to see Dr's are taking us more seriously.

    Anyway, after 3 years TTC I got a BFP yesterday at 9dp5dt using immunes (25mg of Pred from 2 days before transfer, Clexane from day of transfer, Crinone 2 x per day, 2000mg of fish oil, 5g Folate, no diet changes. I'm not sure it will progress of course but I so hope this one is a stayer after 4mc.

    Anyway, I just wanted to let you girls know that it can happen with treatment and a pro-active FS.

    Also, if you would like me to put my uterine / blood NK results up for comparison, I am happy to do so...

    x

  10. #69
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    Hi ladies,

    Need some help from those who have done a cycle on immune protocol with dr matthias.

    In my phone consult notes I haven't written when to start clexane - just to stop 2 days before EPU and the day of EPU. I emailed to clarify, and gwyneth replied to start the day after transfer! So now I'm totally confused. I think I'm supposed to start at the beginning of a cycle, along with the prednisolone. I'm going with my gut feeling and start tonight while I wait to hear back from them.

    If anyone can let me know when they started clexane it would be so helpful! Thanks
    Last edited by Bella978; 21-09-2012 at 19:39.

  11. #70
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    helenmac is offline After 3 yrs of tcc I've got a BFP!
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    Kiwi - I'm so sorry that AF showed up. At least now you are on the right track with seeing Mr. M and getting an immune treatment plan in place. You are in good hands. Be kind to yourself and take care.

    Satelite - Fantastic news about your BFP!!!! Did you have slightly raised high nk levels? From what I've seen the women with slightly raised levels respond well to the steriod treatment with clexane but the unfortunate group that have high levels and especially CD57 need the more aggressive stuff!!! Wishing you the very best for a wonderful pregnancy!

    Bella - I've alway started clexane the day after transfer with every one of my cycles. Good luck on the immune meds and keep us updated.


 

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