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  1. #631
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    Im so sorry about your experience
    Quote Originally Posted by MGC Bertie View Post
    Chiefsgirl and SoClose.... really sorry to hear about your BFNs. It just doesn't get any easier, does it? As to weaning, you could go with what most people here are suggesting - 5mg every 3 days, however if you are on a dose lower than 40mg and have been taking it less than 3 months (which most women on here are), then you can actually wean off 5mg per day, so then it only will take a week. I've done that before and have had no side affects.

    AFM..... I went and saw Dr M last week, in preparation for our 4th try using his immune protocol. Unfortunately, it's the first time I came away from him quite disheartened, and with the real feel that there's nothing more he can do for me. During the consult he actually became quite irate with all my questions, and instead questioned what I was asking. He stopped short of not taking me on again, but I didn't have much luck in answers.

    For those who are interested, here's the sum-up:
    - Prednisolone (same as previous cycles) 25mg from day 1, 30mg from transfer - said I can split it half morning/half lunch, but pretty much said it didn't matter medically, it was up to me!
    - Aspirin (same as previous cycles) 100mg from day 1
    - vitamins - continue all my usual ones (calcium, Vit C, Vit D, Vit E, Elevit, COQ10, Fish Oil) but said to buy extra Folic acid, so I've done that
    - Clexane injections (same as previous cycles) 40 from day after transfer - then I queried about starting it beforehand, and only as I asked, he said, "oh yes, since you're doing an FET, you can start clexane 10 days before FET, stop day before transfer, and re-start 2 days after transfer". He wouldn't have come up with this, if I hadn't prompted.
    - he will do IVIG before the transfer- citing that maybe I need something stronger. As I weigh 75kg, he will use 15grams, which costs $2250 (not claimable)
    - wants my anti-thyroid antibodies re-checked - they've always been abnormal, and he's never mentioned them before as a concern, but now he wants them re-tested before going ahead with the FET

    NO, he will not let me use:
    - no to dexamethasane (stronger steroid than prednisolone). I questioned why not, and he said, "because you don't need it." Not a medical answer, so I pushed the issue, and he said, "you don't have what others have, so we're not discussing it." When I wanted to know what it was that others have that I don't have, he became infuriated.
    - no to Augementin or Doxycycline (types of antibiotics) - he said that if my FS wants me to use those, then I can get the FS to do so.
    - no to Nuprogen (immune injections that calm overactive immune system) - he said that this is just a stronger version of IVIG, and that I'll be having IVIG, so don't need both (though I'm sure others on here are using both)
    - no to Feldene / Buscopan - he totally disagreed with these, waved his hands at me and said, "no, they're old studies." Again, I'm sure there are some women on here, who Dr M has said yes to those just recently.

    Then, when I asked about my FS doing the day 21 NKC biopsy on me, but the results haven't come back, he didn't seem fussed. I queried about the FS doing the biopsy, and whether he would do the same biopsy or a different version, he looked at me as if I was mad. I tried to explain that my FS is just having it checked by Douglas Hanly Moir Pathology, and didn't he have some tests that he does that gets sent overseas? He was quite annoyed, and said, "what are you trying to say?" So I said, "Dr M, you've told me before that you do some other tests or biopsies that are sent overseas for testing." He shook his head and said, "no there's nothing else." (But again, I'm not going crazy, am I?) So I asked, "are there any other tests that I haven't done?" and he replied, "no, you've already had plenty." Which to me, seemed like that there are still some, but I was getting no-where.

    By the time I got to the car, I was in tears, as it hit me, that the actual problem, is that he can't help me. Yes, he can help a good percentage of women with immune issues, but I am one of the smaller percentage that his / Dr Beer's protocol doesn't work.

    Anyhow, in process of checking thyroid levels at the moment to see if we will go ahead this month with the FET - if so, IVIG will be next Sat and FET the week after. Sorry for the huge sad rant, but thought it important to present how this recent consult went, compared to the hope he gave me at the beginning when I first met him.

  2. #632
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    Katiana, I really pushed for Dex and I am not even certain that I needed it instead of prednisolone. Asked dr M and apparently he can tell who won't respond to prednisolone from the biopsy results. I truly feel that's it's the infusions particularly for me the IVIG that are most important. The steroids helped to control my very high ANAs 1/640 and i was on 2mg of Dex fro day 1 of cycle till 9 weeks when I swapped to 25mg of prednisolone and now I am 19 weeks and down to 15ng of prednisolone. I also took Neupogen till 10 weeks but for me that was to try and prevent miscarriage. I should also mention that I am 6ft and was 80kg so hence 20g IVIG and Neupogen is by body weight too and my high dose of steroids maybe connected to my size.

  3. The Following 2 Users Say Thank You to Nidhulaine For This Useful Post:

    katiana  (05-07-2014),MGC Bertie  (05-07-2014)

  4. #633
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    MGC Bertie I'm sorry you had that experience with dr m, how disheartening.

    Have you considered consulting with Karen pace, or one of the better known RIs in the USA like dr sher or braverman?

    They are $$$ but maybe can provide a fresh direction for you? Many long timers from the original nkc thread have moved on with them (in conjunction with dr m)

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    MGC Bertie  (05-07-2014)

  6. #634
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    Soclose and chiefsgirl so sorry about your bfn, it's just not fair.

    MGC Bertie, I think i would have been so angry I would have just stormed out. Maybe it's not that he can't help you but he has you on the right protocol for the issues you have and just didn't communicate that to you. All he needed to do was give you a clear explanation for his answers to you.

    I know for myself I haven't learnt much at all from the 3 FSs I've had as they don't seem to disclose anything to you. Everything I've learnt relating to IVF has been through BH and reading the knowledge and experiences that other women are going through. We all have our different issues but are all in the same boat, if you know what I mean.

    Someone else may be able to confirm this but from memory of reading everyone's protocols I think he only prescribes Dex to women who have high NYC in the uterine, thats the pattern I noticed anyway, that maybe why he won't give it to you. With the USA blood tests I think he only does this if he finds something in the initial blood tests. I'm sure biopsies aren't sent there and only done here.

    It's been such a long road, don't give up now. Sometimes it's hard to put your faith and trust in the medical professionals but what can we do, but if your gut instincts are telling otherwise you have to act on them for your own piece of mind....stay strong

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    MGC Bertie  (05-07-2014)

  8. #635
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    Thanks to all the ladies for the info on weaning off steroids. Very much appreciated.

  9. #636
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    Quote Originally Posted by MGC Bertie View Post
    Chiefsgirl and SoClose.... really sorry to hear about your BFNs. It just doesn't get any easier, does it? As to weaning, you could go with what most people here are suggesting - 5mg every 3 days, however if you are on a dose lower than 40mg and have been taking it less than 3 months (which most women on here are), then you can actually wean off 5mg per day, so then it only will take a week. I've done that before and have had no side affects.

    AFM..... I went and saw Dr M last week, in preparation for our 4th try using his immune protocol. Unfortunately, it's the first time I came away from him quite disheartened, and with the real feel that there's nothing more he can do for me. During the consult he actually became quite irate with all my questions, and instead questioned what I was asking. He stopped short of not taking me on again, but I didn't have much luck in answers.

    For those who are interested, here's the sum-up:
    - Prednisolone (same as previous cycles) 25mg from day 1, 30mg from transfer - said I can split it half morning/half lunch, but pretty much said it didn't matter medically, it was up to me!
    - Aspirin (same as previous cycles) 100mg from day 1
    - vitamins - continue all my usual ones (calcium, Vit C, Vit D, Vit E, Elevit, COQ10, Fish Oil) but said to buy extra Folic acid, so I've done that
    - Clexane injections (same as previous cycles) 40 from day after transfer - then I queried about starting it beforehand, and only as I asked, he said, "oh yes, since you're doing an FET, you can start clexane 10 days before FET, stop day before transfer, and re-start 2 days after transfer". He wouldn't have come up with this, if I hadn't prompted.
    - he will do IVIG before the transfer- citing that maybe I need something stronger. As I weigh 75kg, he will use 15grams, which costs $2250 (not claimable)
    - wants my anti-thyroid antibodies re-checked - they've always been abnormal, and he's never mentioned them before as a concern, but now he wants them re-tested before going ahead with the FET

    NO, he will not let me use:
    - no to dexamethasane (stronger steroid than prednisolone). I questioned why not, and he said, "because you don't need it." Not a medical answer, so I pushed the issue, and he said, "you don't have what others have, so we're not discussing it." When I wanted to know what it was that others have that I don't have, he became infuriated.
    - no to Augementin or Doxycycline (types of antibiotics) - he said that if my FS wants me to use those, then I can get the FS to do so.
    - no to Nuprogen (immune injections that calm overactive immune system) - he said that this is just a stronger version of IVIG, and that I'll be having IVIG, so don't need both (though I'm sure others on here are using both)
    - no to Feldene / Buscopan - he totally disagreed with these, waved his hands at me and said, "no, they're old studies." Again, I'm sure there are some women on here, who Dr M has said yes to those just recently.

    Then, when I asked about my FS doing the day 21 NKC biopsy on me, but the results haven't come back, he didn't seem fussed. I queried about the FS doing the biopsy, and whether he would do the same biopsy or a different version, he looked at me as if I was mad. I tried to explain that my FS is just having it checked by Douglas Hanly Moir Pathology, and didn't he have some tests that he does that gets sent overseas? He was quite annoyed, and said, "what are you trying to say?" So I said, "Dr M, you've told me before that you do some other tests or biopsies that are sent overseas for testing." He shook his head and said, "no there's nothing else." (But again, I'm not going crazy, am I?) So I asked, "are there any other tests that I haven't done?" and he replied, "no, you've already had plenty." Which to me, seemed like that there are still some, but I was getting no-where.

    By the time I got to the car, I was in tears, as it hit me, that the actual problem, is that he can't help me. Yes, he can help a good percentage of women with immune issues, but I am one of the smaller percentage that his / Dr Beer's protocol doesn't work.

    Anyhow, in process of checking thyroid levels at the moment to see if we will go ahead this month with the FET - if so, IVIG will be next Sat and FET the week after. Sorry for the huge sad rant, but thought it important to present how this recent consult went, compared to the hope he gave me at the beginning when I first met him.
    Bertie thank you for sharing this with us. It's important (well to me anyway) to hear as much about all of this as I can whether it be good bad or ugly! I am so sorry you had this experience.

    I'm a bit confused with things too. I did a fet and was told different to you about the clexane. Nothing about stopping it at transfer. Actually he never even told me when to start it!!

    I was going to push him about changing from pred to dex cycle too. Interesting if its only used for high nk cells in the uterus?? Mine are borderline apparently. To be honest I think my biopsy was done at the wrong time (thanks G!) and I'm seriously doubting that mine are borderline considering my history of very severe endometriosis and in Dr Beers book it says endo and high nk uterine cells pretty much go hand in hand yet mine aren't an issue apparently. I just wonder how far off the results are if done at the wrong time. Worrying for sure!

    Don't know why he said that to you about the antibiotics as he put me on them for my FET

    Pretty sure I read a few pages back about the buscopan too!!

    Will be interesting to see if he lets me go on a more aggressive protocol next cycle. I will be pushing hard for it as its our last cycle ever and we are still childless

    Seems there really isn't a straight clean cut answer for all stuff immune related and I've definitely read things that have contradicted other things!!

    I really just hope Dr M gets us all there in the end. I have to have faith that he will xxxx

  10. The Following User Says Thank You to soclose For This Useful Post:

    MGC Bertie  (05-07-2014)

  11. #637
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    Thanks for all the well wishes too. Feeling rather flat and at a loss as to how someone can transfer so many good quality embryos and never get implantation. 16 transfers and nothing. I know my uterus is pretty bad from all the endo and countless operations. Lots of scar tissue and as my fs says 'the worse uterus he's ever seen'. So maybe it will never be because of this. Although after my hysteroscopy with Dr M in December I asked what he thought. He said 'it looks rather nasty in there but I've dissected a lot of scar tissue so implantation is possible with the assistance of immune meds'. I don't really know what to think anymore!!!!

  12. #638
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    Bella... I have read a bit on here about Karen Pace and other RIs, but was kind of hoping not to have to start proceedings with yet another specialist. But I will definitely start thinking about that.

    Miss Sagi... That is definitely a possibility. I must admit I've never found Dr M to be forthcoming with explanations, but never fussed before, as I'd always got everything I wanted off BH, and basically was just going to him for the prescriptions etc. Now I'm getting contradicting information and want an explanation, I found the consult very frustrating. Since we're all paying big money, I feel proper, medical explanations are not unreasonable.

    SoClose... yes, definitely too many contradictions there, hence you can see my frustration. But the more women who are asking these questions, then perhaps he'll get used to answering them properly. 16 transfers... that is certainly an effort there. I so hope everything falls in place for this last one for you xx

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  14. #639
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    I am still getting to know everyone and its hard to keep up with names so I hope I get this right. So so sorry so close and chiefs girl. Its really unfair.

    MGC Bertie - thanks for letting us know about your consult. I have my first with Dr M on 24 July. My FS suggested Dr Braverman (NY) or a Professor Russell (in Sydney) and after I read people's experiences on BC and get advice from some of you by PM, I am still unsure what to do. Given my FS has worked with Braverman before, I am inclined to go that way but I worry it will cost an absolute fortune.

    I have started looking at the thai surrogacy option as a back up plan but thats really expensive too. I read a post from a girl on the thai surrogacy website and she has two children through surrogacy and said she would sell everything she owns and live in a tent to be able to afford to have those children.

    I have a FS appt on Monday and will try to decide then about Braverman or Dr M. I want whoever it is to work well with my FS.

  15. #640
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    I am sorry you left in tears MGC Bertie. If it's any consolation so did I after my first consultation with Dr M. He gave me one option only - ivig and LIT which would financially cripple us.We have one child already so we are lucky in that sense for sure. I am working on it as research is my thing! I suspect DR M will not consider alternative/newer treatments as I have addressed this and was surprised that he was so dismissive. Keep strong!

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    MGC Bertie  (06-07-2014)


 

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