* Author Topic: Humira Chat ~ Part 2 (formerly Humira Ladies/Experiences)  (Read 190920 times)

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Offline Poppy1981

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Humira Chat ~ Part 2 (formerly Humira Ladies/Experiences)
« Reply #1000 on: 7/02/19, 19:38 »
Hi Flossy, thanks! They are called Stork Fertility but they might be part of Healthcare at home? In any case, ARGC sent the prescription directly to them and the price was ok there based on my research.

I would absolutely take the second round too if it didnít mean I cannot cycle until June! To be fair, there is still a chance I might not need the second round after all but I see that most people do so was wondering...

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    Offline Flossy34

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    Humira Chat ~ Part 2 (formerly Humira Ladies/Experiences)
    « Reply #1001 on: 7/02/19, 19:53 »
    My friend has only had to take one round so you never know.
    Iíll look up stork fertility although if I go back to Argc Iíll just leave it all up to them to sort.
    Wishing you lots of luck with everything

    Offline Poppy1981

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    Humira Chat ~ Part 2 (formerly Humira Ladies/Experiences)
    « Reply #1002 on: 7/02/19, 21:07 »
    Thank you Flossy, best of luck too with whatever you decide!

    Offline chini

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    Humira Chat ~ Part 2 (formerly Humira Ladies/Experiences)
    « Reply #1003 on: 30/05/19, 20:43 »
    Hello everyone! I just wanted to join to thank you for a really informative thread that's helped me a lot! Especially LondonWriter I really appreciate your knowledge and ability to share it in a clear and approachable way!

    Also, I noticed some people here saying they don't have autoimmune conditions, and then mentioning that they have Raynaud's syndrome or endometriosis, so I just wanted to correct that in case anyone reads this thread. Both Raynaud's and endo are autoimmune conditions, or have autoimmune components/behaviour to them.

    So if you have endometriosis (or its close relative adenomyosis) or Raynaud's, please be aware that's already a sign that your immune system is likely to not behave entirely normally, and you should probably have your immunes checked. If you do an internet search using the keywords [Raynauds + autoimmune] or [endometriosis + autoimmune] you'll find lots of info.

    I also wanted to mention that I had my first Humira injection 5 days ago on Saturday last week, and haven't really had any side effects yet, but no miracle feelgood state either - so apparently for some people it doesn't do much? I'm very curious however to find out what it's done to my TNF-alpha levels and high NK cells once it's time for me to retest a week after the second dose.

    Lots of good luck for everyone wherever you are on your fertility journey and thanks again for a great conversation!! x

    Offline Flossy34

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    Humira Chat ~ Part 2 (formerly Humira Ladies/Experiences)
    « Reply #1004 on: 19/06/19, 18:28 »

    Hi
    Is there anybody in the group who has been given humira to treat endometriosis rather than because tnfa was significantly elevated?
    Reason I ask is that I conceived twice while on the drug but my tnfa is now within normal range so I donít require it. I am aware of studies that have been done into the effectiveness of humira in treating endometriosis and wondered if anyone had been given it for this purpose rather than just because of elevated cytokines/nk cells etc.
    Many thanks

    Offline chini

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    Humira Chat ~ Part 2 (formerly Humira Ladies/Experiences)
    « Reply #1005 on: 26/06/19, 21:56 »

    Hi
    Is there anybody in the group who has been given humira to treat endometriosis rather than because tnfa was significantly elevated?
    Reason I ask is that I conceived twice while on the drug but my tnfa is now within normal range so I don’t require it. I am aware of studies that have been done into the effectiveness of humira in treating endometriosis and wondered if anyone had been given it for this purpose rather than just because of elevated cytokines/nk cells etc.
    Many thanks

    I'm really sorry Flossy - I can't help you. However I just wanted to say that the constant inflammation caused by endometriosis/adenomyosis usually manifests itself as high inflammatory cytokines. So I just find it strange that one could have endo or adeno and not have high TNF-alpha. Do you have any theory as to why this might be happening in your case? I'm super curious! Also, if you could point me to the research about treating endometriosis with Humira I'd love to read it! Don't any of the papers give you any answers to your question? Apologies again that I can't be of much help - I hope someone will answer soon.


    AFM, the two Humira shots lowered my TNF-alpha from 33.1 to 22.3, so I'm super happy and will now start down regulation on Friday feeling much more confident.

    Offline andromedaE9

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    Humira Chat ~ Part 2 (formerly Humira Ladies/Experiences)
    « Reply #1006 on: 27/06/19, 12:21 »
    Hi Chini

    That is great that the Humira lowered your Cytokine level. I have endometriosis and high cytokines too but last FET ended up a chemical preg. Are you doing the immunes via Lister?







    Offline chini

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    Humira Chat ~ Part 2 (formerly Humira Ladies/Experiences)
    « Reply #1007 on: 27/06/19, 14:45 »
    Hi Andromeda, I'm so sorry to hear about your chemical! Did you do any immunes that time?

    I'm doing the immunes with Dr Gorgy and the treatment at the Lister.

    Offline Flossy34

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    Humira Chat ~ Part 2 (formerly Humira Ladies/Experiences)
    « Reply #1008 on: 27/06/19, 20:39 »
    Thatís brilliant that your cytokines have lowered to 23 Chini. I bet thatís made you feel much more positive about your next cycle now. How have you found Dr Gorgy? Iím considering speaking to him for A second opinion.
    Iím not London based though so weighing up if it will be worth just doing the telephone consultation. I sometime think you can have a better chat and understanding of things by doing things face to face.
    The studies I found were the ones refererenced by Alan Beer in his book.

    I have absolutely no idea what has reduced my tnfa other than maybe pregnancy and extended term breastfeeding. I also take selenium alongside my thyroxine as recommended by professor Conway. I always chuckled to myself when my midwife said pregnancy makes endometriosis better. Maybe there is some truth in it. Who knows. I do still have an endometrioma though. Itís all a mystery.
    Thanks for taking the time to respond to me and I wish you all the very best xx

    Offline andromedaE9

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    Humira Chat ~ Part 2 (formerly Humira Ladies/Experiences)
    « Reply #1009 on: 27/06/19, 21:45 »
    Hi Chini

    Thank you. I am doing my treatment at the Lister as well. I had one consultation with Dr Gorgy and he prescribed Humira but I ended up not taking it as Lister advised against it for now and I was worried about the side effects... Yes, I took steroids/prednisolone. It was my first ever BFP. I also took Clexane so not sure if that had something to do with it as well.

    I have a follow up with my consultant soon. I might re-do my NK-cell test to see what  is going on.

    It's good to read that you didn't experience that many harsh side effects from the Humira injections...

    x