Immune/NK cells pred thread #31

@VenusStarr I'm okay I guess just keeping really busy at work. I emailed the nurses at CRP about the heparin being offered to me at RMC and they said Dr Edge has advised against it. I sent them over my report but they are advising not to take it. So again I'm in a limbo.

I feel like after so many losses you are literally willing to try anything in the hopes that it will work! Not sure how I feel about all this.

I'm not willing to risk another loss but then again I don't want to be taking medication when I have been advised against it by the clinic.

@VenusStarr how are you getting on? Hope you have tried to keep your mind off things and kept positive even though we all know how extremely difficult that it given what we are all struggling with.

It just seems so unfair that this is something we have to go through and spend so much on. Don't want to seem ungrateful but some days are just so difficult and bring you down.

@Danni8 I'm so sorry to read about everything you've been through, sending you lots of love. I wish I could help in any way but I don't have any experience of what you've been through. Just wanted to say that I really hope you find some answers and you get your miracle soon! 🍀

@VenusStarr How are you feeling today? Oh so you think you ovulated on trigger day? I always thought it was 36 hours later but yes if you're spotting then the dates would make sense. Do you usually feel ovulation? It makes sense about your thyroid and giving it a month off, I have read thyroid is really important and that it should be between 1-2 so I think you've made the right decision to make sure thats all fine before you go ahead.

AF finally arrived for me yesterday, but its spotting and even this morning so I can't quite class it as day 1 yet. Just hope I get full flow so I know for sure when to start my letrozole. I also haven't had any period pains so i'm really hoping my bad periods were due to the polyp and that they'll be much better now 🤞

@Zest11 How are you feeling about friday? Good luck for EC!

Hi - I’ve just been catching up on the thread after a while and I just wanted to say how sorry I was to read about your updates @InvisibleDreamer @VenusStarr @Danni8

Absolutely heartbroken for all of you. I wish I had helpful advice or words of wisdom but in the absence of that - I’m sending you all a big hug and lots of love.

I’m sure everyone on this thread can relate to the pure heartbreak that comes with a negative pregnancy test or bad scan ….. your heart absolutely sinks and you’re not sure how to pick yourself back up, regain the hope that’s been shattered and carry on. But know that we’re all rooting for you! Xx

Exactly. I keep thinking we didn't come this far to just come this far right!?

Aah thanks for that. Did finding the ureaplasma make any difference at all? Like did it get you further along? I keep looking for signs that my treatment is at least on the right track but so far nothing. Not seen a heartbeat before. Do you know who the urologist did the urine pcr through?

Oh gosh the sitaglitpltin made your lining crap!? No way. I tried it for 3 months then did another 2 month stint. No difference made. They've not published any studies on it since 2020 which isn't encouraging. 🙃Xx

Thank you @VenusStarr 💖. Lol yep fucking shit sums it up. Wasnt sure of the rules on here lol. It's nice to talk with people who get it and are still on the process. So many online friends I've made have cracked the code and had their babies!
I'm sorry to hear you've also had a recent difficult cycle.

My cytokines is the main immune issue for me. Blood nk cells are only slightly raised. So I tried humira last year April/May and it flared my cytokines. I wonder though if that's how it works. I'll ask again. What I did last year is switch to tacro after the 2 doses of humira went badly and then saw a drastic reduction in my cytokines. That being said, I didn't retest before the transfer. I tried LIT in 2021 and my LADs improved but then tried that with natural pregnancy and made no difference. I wouldn't be against trying it with a pgs tested embryo though. So hubby's frag was initially 40% then went down to 35% then 29% when reated before our last egg collection in 2020. Still using the embryos from that batch as we took a long break. If we make more embryos which looks likely though, I'll get him to do it again.

We did the Emma Alice test back in 2020 which looks for hidden infections and didn't find any. Not sure if it's worth doing it again though or doing the menstrual blood one... it is just such a specific time that they end which makes me think its a specific issue. But knowing my luck it'll be an issue that hasn't been discovered yet 🙄. It's so hard to walk away after everything that we've put into this.

Have you had any of the biopsies to check your unk cells at all? Xx

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

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

@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!

@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

@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

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

@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

@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!

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

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

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 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

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 ❤