Immune/NK cells pred thread #31

[VenusStarr]

Hi all, we've fill up the last thread, so starting a new one. Will start tagging but feel free to add anyone I miss!

@HopefulH thanks for the yoga tip! I'll definitely look into her today! Also your cycles sound very much like mine! On CD 9 I had 2 dominant follicles at 21mm and 19mm and they triggered me there and then while I had my intralipids. It was about right because I ovulated 36 hours later (had really bad ovulation pains as I had a dominant on each side) so was told to dtd CD 9, 10 and 11. So by the time you ovulate they would have matured that little bit more to around 25mm which is about right. I think the follicle size and trigger when you're having it is fine as Dr Edge was really pleased with mine and said ''it couldn't have gone better''. I also worried my body was growing the follicles too quickly and she reassured me and said it was perfect and that they will still have a viable egg in them. Sorry I don't know much about the viagra for lining, but just that I have seen other people on it too.

That's interesting about stopping meds no matter what on 12days past trigger? I've continued them in the past cycle until I got a definite negative..

@VenusStarr I am so sorry that you're still in limbo! Will you be testing again later on today? I had the same thing happen to me for SO 1 with a faint line on first response but because I had started testing from about 8dpt I could see my line getting fainter. I really hope yours gets darker tomorrow, that's the only way you'll know for sure. How are you feeling in general? I hope the cinema takes your mind off it all, good luck for tomorrow xx

@HopefulH following on from the trigger topic. I just remembered for SO 1 I had a faint line on 10dpo and contacted the nurses and they told me to continue on meds, the next day it was about the same faint line which i assumed was trigger as it hadn't got darker. I sent in a pic of them to the nurses and Dr Edge told me then to stop meds as she said it was negative (even though there was a faint line). I was still reluctant to stop as I've seen people get really faint lines which go on to get darker at like 15/16dpo so i don't know if i'd want to stop next time. I mean she was right about it being negative in the end, but I don't know if i'd want to stop completely at 10 dpo as it seems so early doesn't it?

Thank you @star2022 😪 its must crap isn't it? Deep down I think its trigger fading. I'll see if I can test later, just still weeing loads though so can't seem to hold longer than a couple of hours.

The cinema was a good distraction but I've just mentally crashed now. We're going to make some chocolate cornflake cakes and some nice food this evening. I'm not sure how I feel about going straight into another cycle. It's intense. Might just take next cycle off xx

I'm so sorry @VenusStarr I totally know how you feel about wanting the break. I was exactly the same after my SO - just the mental exhaustion of having hopes up and not really knowing where you stand and to go straight into another cycle is tough. (especially after so many ivfs too) I was deep down glad about my polyp needing removing as it gave me the month off meds and ttc which i didn't know i needed. You know your body and mind best, I would really do what you feel. It's definitely intense and the meds don't let you feel like yourself do they? I really hope you get some good news or some clarity on the situation at least. This whole journey is just constant up and down 😔 Thinking of you x

Thanks for understanding @star2022 I also feel guilty that it's my fault it didn't work and for putting dh through it 😞 I'd got into a really good headspace before this cycle not ttc and feel like I've just undone it all. I've not been to the gym all week as I felt rough.

Not that I'm obsessing... 😒 but I'm just looking at my bbt chart and wondering if maybe ovulation was cd13, so that would put me at 9dpo. But am just torturing myself really. A definite bfn would've been easier to cope with. X

@VenusStarr sorry you're feeling that way but it's really not your fault. If this cycle doesn't work then another will so please try to be kind to yourself. I really hope things turn around for you tomorrow and the line is darker! Xx

I hope the line is darker tomorrow/Tuesday @VenusStarr . I am thinking of you! Insanely faint lines are the worst, no clarity. I hope you get some sleep tonight and time passes quickly for you!

I’m really sorry for the uncertainty @VenusStarr - I hate the trigger for that reason. I’ve spent so much time obsessing over faint lines. I really hope tomorrow’s line is darker and you have some certainty either way. And don’t blame yourself for putting DH through it, this is a journey you’re on together and he wouldn’t want you to be the only one shouldering the burden. Hope you’re okay and be kind to yourself ❤

Thank you ❤️ it's not good news today 😞 not sure what to do now. Feeling very low today xx

@VenusStarr sorry to hear that 😔 I was really hoping your line would be stronger today. You don’t have to make any decisions about next steps right now x

hi everyone 🙋

Apologies in the delayed response, it was a crazy busy weekend for me and I am only now catching up on messages.

@VenusStarr thank you for the love and I know doctors sometimes say the most insensitive things without thinking how it makes the other person feel!

@Lily1990 it really is so confusing being under 2 specialists and I don't know what to follow. I spoke to my husband about the heparin injections and he isn't too keen on me taking these. He said stop trying to be a scientist and experimenting on yourself, just follow the treatment plan we are paying so much for and stick to it. The only thing I am hesitant about is I don't think Dr S did this particular blood clotting blood test on me so how would he know the parameters? I am going to email the clinic and see what they say.

@star2022 thank you for the love😊its all you need when you see a negative.

@HopefulH oh really? I thought Dr S was very pro blood thinners...that's interesting. Like I said I'm going to email the clinic and see what they say about the heparin. I feel like I was prescribed it without a second though given to it but then again they are obviously going by what has come up in my blood tests. Plus, Prof Lesley Regan & Dr Raj Rai are both very accredited doctors in this game with a mountain of experience so there must be something to it...

@VenusStarr I'm sorry you didn't get the result you were hoping for. It is really sad and I totally get your point about life being so much more stress free when you aren't TTC. I know this doesn't mean much but this is what I keep telling myself: 'pregnancy isn't guaranteed every time you have unprotected sex so stop putting so much pressure on yourself'. Hope you aren't feeling too low and have something to look forward to. Take your time deciding what you want to do next.

I'm 14dpo and will be taking my medication for the last time this cycle. Haven't tested all weekend and that is not like me at all. This cycle I am positive but I will be a wreck next cycle. This has all taken a toll on my mental health and I find myself in and out of moods regularly. The medication can't be helping. Thinking to book a holiday but then I'm also thinking the money spent on that could buy me sooo many intralipids!!!

@VenusStarr I'm sorry. That's so so gutting.

I have a q...does anyone on here know anything about a thicker lining? I read for IVF it needs to be over 7/8mm. It looks like we are heading towards EC on Friday but my lining has already got up to 12mm and I guess it will only get thicker. I asked the clinic and they were really positive but I've also had 4 failed transfers there and my success was when the lining was about 10mm. (But many of the failures were also with a lining of around 10mm). I am just wondering whether to just freeze everything (if we get anything with my low amh!)

@VenusStarr so sorry it's not good news today. Hope you're holding up okay?

@Zest11 sorry I only have experience of having thinner than desired lining. I imagine it's quite different when you are doing IVF however. Is there anyone you can ask for a second opinion?

@VenusStarr eh sounds like you’re still having a really tough time. The bone pain for me was one of the worst symptoms I had throughout my whole journey, the ache in my legs when I walked or even just pain when lying in bed at night, awful!
I would say it’s worth asking them about Tacrolimus, it seams you’ve tried everything else I really want it to be your miracle drug too. Dr Edge was the one who brought it to the clinic. Let me know if you ask what they say. I live in fear they will decide to stop using it and I won’t be able to have baby #2.

@star2022 I had tried pretty much every other standard drug we’re all on, complex plan including GSCF Fragmin, had a hysteroscopy and even 5 rounds of IVF to make sure there were no genetic issues with the embryos. All miscarriages from trimester 2, getting earlier over time until I’d loose the baby days after implantation. The only drug I hadn’t tried was Humira. We were totally at the end of the line so I couldn’t believe it when Tacrolmus worked! There’s actually a lot of women around the world who use it, it’s just very rare in the UK. It had many brutal side effects and I was worried about my daughters health on it so it’s very much an absolutely end of the line drug to try. Good luck on your journey!

@StillTrying10000 I've seen Tacro mentioned a lot on the Immune Reproduction fb group. What were the harsh side effects? Did you ever have a laparoscopy done or have any signs of endometriosis? I'm convinced my problems are endo related and that I may need a lap before we have success - but CRP think this will be wasting my time and that the immune meds will help with this anyway...

Just wondering for those that take cyclogest after ovulation - do you insert both pessaries at night time, or one morning and one at night? Has anyone tried supplementing with a natural progesterone instead? I hate the cyclogest. It makes me so constipated and bloated!

@VenusStarr How are you doing today? X

@HopefulH from google Tacro side effects
More common

1. Abnormal dreams
2. agitation
3. chills
4. blurred vision
5. confusion
6. cough
7. diarrhea
8. dizziness
9. dry mouth
10. fever
11. flushed, dry skin
12. frequent urination
13. fruit-like breath odor
14. general feeling of discomfort or illness
15. headache
16. increased hunger
17. increased thirst
18. increased urination
19. itching, skin rash
20. joint pain
21. loss of appetite
22. loss of consciousness
23. loss of energy or weakness
24. mental depression
25. muscle pains, trembling, or twitching
26. nausea
27. pale skin
28. runny nose
29. seeing or hearing things that are not there
30. seizures
31. shivering
32. sore throat
33. stomach pain
34. sweating
35. swelling of the feet or lower legs
36. tingling
37. trembling and shaking of the hands
38. trouble breathing
39. trouble sleeping
40. unexplained weight loss
41. unusual bleeding or bruising
42. unusual tiredness or weakness
43. vomiting

Less common

1. chest pain
2. increased sensitivity to pain
3. muscle cramps
4. numbness or pain in the legs
5. ringing in the ears
6. RareEnlarged heart
7. flushing of the face or neck
8. weight loss

Thank you all ❤️ @comingsoon786110 you're so right. I've just got caught up in it all. I'm just struggling to see I'll ever get pregnant again, so I don't even know if the new protocol will work.

We've decided to not do superovulation next cycle. I don't want it to take over everything and logistically going to the clinic every 3 weeks is too much whilst ttc. Plus I'm not keen on being on estrogen so regularly. I think I became resistant to it last year and that caused my lining issues. So the plan is next cycle off, the one after superovulation again.
It'll give us chance to save a bit as well, so we could do one final ivf round.

I genuinely think we're close to walking away from this now and living childfree. I'm not quite done yet, but I don't think I have much more left in me.

Thanks for the messages @Zest11 @star2022 @HopefulH @Ifitistobesaid @StillTrying10000 hope you're all OK x

@VenusStarr makes sense, try to enjoy the summer a little. I really hope you can have a try on the Tacro if you have one last go when you are feeling up to it xx

@VenusStarr I'm so sorry, i'm absolutely gutted for you. Please be kind to yourself ♥️ Your plan to take this month off sounds like a good idea, plenty of self care and enjoying the month without any stress. Hope you're doing ok as can be xx

@StillTrying10000 thank you for explaining! So nice to hear that it worked for you and thanks for sharing as it always good to know they have other options too.

@HopefulH I take the cyclogest morning and night just to even it out, i've not tried both at night so can't really compare but using it morning and night for me doesn't give me much bloating/constipation, maybe try that and see how you go? I also worry I might have endo as its never been something thats been checked. I did raise this with my GP to see if they can get a referral started for me as I know these things take time so at least I know its in the pipeline as a potential investigation if SO doesn't work for me. But its good to know that CRP say the meds will help with that anyway!

@Zest11 yes! I seem to always have a thicker lining - on a natural cycle my lining is perfect 7/8mm but during IVF my lining was getting to even 14mm on transfer day for one of my cycles! I've heard mixed things, one consultant was like 'oh thats a great lining' and the other was like 'hmmm its a bit on the thick side' so i have no idea. My cycle failed on 14mm but not sure if it was the lining or something else. I would be inclined to freeze if I was in your shoes if you didn't mind the waiting.

Still no AF for me, i emailed the nurses and they said the hysteroscopy can cause a slight delay, so frustrating!

Hi ladies. I've dipped in and out of this thread for the last 2 years but I've still been trying. I'm sorry to see some of you are also still trying too. It's such a hard process. Lots of love to you all.

So I've had a horrible amount of recurrent miscarriages. We've found hubby has high dna fragmentation so we tried ivf with pgs. I have immunology issues and I'm under Dr Gorgy. We plucked up the courage to do another transfer (this was our 3rd transfer) and after about 6 months of delays, we managed to transfer at the end of March. Beta started out low so thought it was a chemical but it kept doubling. Anyway today at 7w 3 days I had a sh*t scan. Was measuring 5w3d no heartbeat so this is technically my 14th loss. I've had like 5 chemicals so excluding that, it's my 9th miscarriage. Probably splitting hairs at this point.
My protocol was:

• endometrial scratch (for low unk cells)
• tacrolimus 4mg
• neupogen wash (for low unk cells)
• neupogen (gcsf) every 4 days
• ivig at positive beta
• clexane twice a day
• all the ivf progesterone

I feel like I'm on the most aggressive plan but it's still failed at the same time as the other early losses. I've booked a follow up with Gorgy for tomorrow. Is there anything else I should ask for or have I exhausted everything. The only thing I can think of myself is adding prednisolone and maybe doing ivig before transfer.

Hubby and I have discussed doing another fet at this clinic and transferring the two remaining embryos to see if a double embryo transfer works. And if not, moving on to another clinic to create more embryos and possibly use them for surrogacy. We have signed up to a surrogacy charity but as the UK does altruistic surrogacy only, its basically about making friends which can take years.
Feeling really lost and so tired of 6 years of this! Xxx

Just adding that I've also done an ivf with prednisolone and intralipids. And a couple natural cycles with hydroxychloroquine, pred and intralipids. Intralipids definitely don't help my immunes. I think they do the opposite to me tbh. Xx

Oh @Danni8 ❤️❤️ I am so so sorry. It's so fucking shit. I'm sorry for swearing but it makes me so sad and upset that you can be under specialists, do everything right and then still only get so far. I'm sorry you're going through this.

With your dh's dna frag, what's he been taking? I'm assuming he's been checked for infection/ variceole etc? Have you been checked for hidden infections? We recently found both of us had ureaplasma so took Doxycycline.
I think maybe questions about why he thinks this was the right protocol and what he thinks went wrong - was it timings or dose, or something else?
I don't know much about it, but I know Dr G does LIT, is that something you've looked into, or do your results not show its helpful? Dr Shehata uses humira as well but think that's for cytokines so might not be relevant for you (it's not in my plan so far).

It's completely exhausting. I'm sending you lots of love xx

@star2022 I'm sorry af still hasn't arrived for you. That's very frustrating. Were you due today? (Have a vague recollection). I hope it arrives soon so you can get started. Do you feel like it could be on its way?