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!

@comingsoon786110 yes it was my miracle drug after all else failed and we thought we’d have to stop trying. It is brutal though so defo a last resort, let me know if you have any questions about it.
@VenusStarr hope you are hanging in there and things start going your way soon xx 😘

@VenusStarr no he hasn't suggested it. I am not too sure what he will suggest next tbh. I am adamant on not trying IVIG because it is way too pricey and I am not really sure of the other drugs he offers tbh.

I know what you mean about everything happening at once and it does take a toll on you. I become so cynical and its hard to move away from that. But hoping for light at the end of the tunnel for all of us.

@StillTrying10000 congrats on your bundle of joy!! I would love to know any info you can give me, the more the better! What plan were you on? How brutal is the drug? How expensive? What was your miscarriage story( if you dont mind sharing). Any info would be a huge help ✨✨

@comingsoon786110 ive PMed you. Sorry for the 400 odd messages- it wouldn’t let me type it all in one neat message x

I started estrogen today. Wow. My mood is interesting! Irritability levels are off the scale.

I had my review bloods done back in May, sent them to the clinic and heard nothing. Got an email this afternoon saying my clotting results weren't there. Chased my GP, they didn't do them, just missed off the request. No biggie, they'll request. But crp are saying that unless I get them done on Monday I can't have intralipids. I've just replied saying if you need the results I can't have intralipids on Monday at all because i still wouldn't have the results if you do them on the day. Doesnt make sense. Waiting for a reply. I'm happy to give them a miss. But ffs. They've had my results for weeks! And to say I can't do intralipids because they need my clotting results, but they'll just do them Monday, for a fee, just feels a bit off.

How is everyone? X

@VenusStarr that is so annoying. You are so right re. The blood test results not being back on Monday if you got them done then. Very annoying. How are you otherwise? Have you done much Zumba? How come you are taking estrogen? Sorry if I missed it. I wish I had an update but there is nothing. I just came on to see if anyone had any good news but sadly not yet :(

Hi @Zest11 good to hear from you ❤️ I hope you're OK.
I'm really stressed at the moment with work and im not sleeping well, keep waking about 5am, then dh gets up at 5.30am and then im just awake. I don't think the hormones and trying this cycle is helping either. Cried out of frustration today.
We're doing a superovulation cycle, I have to take estrogen as letrozole seems to make my lining thin. I'm cd8 today, scan is Monday.
The clinic said I can still have intralipids, I'd just need the blood test beforehand (despite no way of getting the results 🙃). Luckily I got them done at the GP today. But I'm not too fussed about doing intralipids preconception anyway. I just got really frustrated with their emails today, it didn't really make sense to me to be honest. But I've had the bloods done now, so no way will I pay them to do it. I said if it's unsafe for me because you don't have the results, I'll just leave it this cycle and they came back and said it doesn't affect clotting factors anyway, it's just my records aren't up to date 🤷🏻‍♀️

Still zumba-ing, it definitely feels like my space to just switch off, I'm going again in the morning.

I know you said nothing much is happening but how have you been? X

Hi all, is it ok to jump on?

Where is everyone getting intralipids? I had to travel from Cardiff to Surrey last time, but can't seem to find anyone closer that offers it

Hi @MotherOfShihTzus I travel from Birmingham, it's a whole day and very tiring.
I only know of a place called Cherish in Sutton Coldfield but not sure if they need a prescription. Are you under Dr S? I have heard that you can book someone to come to your house to do it but again would need a prescription and think it's more expensive.

Thank you, @VenusStarr I was under dr Shehata in 2021, and had my son as a result ❤️ (I hope this isn't triggering to say). I'm now hoping for number 2 but will find the travel difficult with having a toddler so hoping there is another option

I hope you can find another option @MotherOfShihTzus ❤️ will you be able to get the other immune meds prescribed?

Just at crp now, had my scan and waiting for intralipids. Got 3 follicles but my biggest one is on the cusp of being too big 🫤 will trigger at clinic. I did do an opk yesterday and it was quite dark. We dtd on Saturday and the schedule is tonight, maybe tomorrow and Wednesday. I don't know if anyone else is on gcsf but they've changed it to take today, then 4 days later (instead of 6dpo) @comingsoon786110 might affect you? More money 🙃🙃 they haven't even mentioned my missing bloods today!

Feeling a bit deflated about the response, I guess it's good but she didn't seem that hopeful. My lining was 6.4 but she said that's fine. She said to stay on 7.5mg letrozole as any higher and she couldn't trigger me, so I guess that's a positive.

@star2022 how is your cycle going? Are you near test day?

@HopefulH How's things with you? Was it your liver or kidney function that was not good, are you any further forward with that?

Hope everyone is ok xx

Hi @VenusStarr I have yet to read the last few pages! I have still been so busy with the house move, it really has been a great distraction. I've resorted to online house shopping rather than read forums and its been fab mentally. What sizes were your follicles and what cycle day are you on? Did you see Dr Edge? Your cycle sounds like how mine was this month, I had tested with an OPK the day before my scan and it was a peak, and when i saw dr edge I'd had 2 follicles at 24mm and 19mm so I had the trigger there and then.

I tested yesterday and there was a faint line which I was expecting as the trigger stays in my system for 14 days. Tested again today, and it was fainter so it looks like I'm out.

The next cycle Dr Edge wants me on 7.5mg letrozole instead of the 5mg. I'm just wondering whether a higher dose means they'll grow quicker? Or would scan days still be more or less the same time? This will be SO 5 for me, not sure how much longer I can keep doing this.. xx

Oh @star2022 I'm so sorry ❤️ what tests are you using? I can't get first response in the shops now.

She said mine grew unevenly this time. I'm not sure if they'd grow quicker, what cycle day do you normally have a scan?

My largest follicle is 22.7mm, I do feel like I'm ready to ovulate today. She wants me to go for a scan earlier next time. Just feel a bit rubbish as she said its probably too big and might not be any good. Ugh. The other 2 are about 15mm 🫤 so probably no good either. We'll follow the plan but not hopeful it'll be successful.

Are you going straight into another round? It's hard not to feel the way you do. Do you think you'll go back to ivf? Xx

@VenusStarr oh really? Did they say a reason for the change? I have decided not to take gcsf next cycle as i don't think it works and there is no real evidence or forums i can find with success stories.

I have my RMC appt tomorrow so lets see what happens.

Hope everyone is well 🧡💐

No, just said it was a protocol change @comingsoon786110 it's difficult to know isn't it. I know of 6 people who have been prescribed gcsf and it's worked for. Dr Gorgy uses neupogen which I think is very similar and I've found more evidence on that than gcsf.

Good luck today, let it's know how you get on.

Feel rough today, have cancelled the gym tonight. Not sure if I've ovulated yet but my stomach is tender and swollen. Feel a bit wired but that's a combination of lack of sleep and anxiety. Looking forward to starting steroids tomorrow 🙃

@VenusStarr hmm i was hoping it was my answer to be honest. I might continue, let's see what Dr S says.

I had my appt and they said that i had a minor case of chronic endometritis and prescribed me doxycycline for it to start whenever I am ready. Thats all she said really. I was due my procedure with Prof Regan but for some reason someone else done it. She still thinks its my heart shaped uterus which was so mild that the other surgeon said it did not need the procedure carried out on it. She said she will do another biopsy in September.

That's pretty much it. I asked about karotyping and she said it wasn't necessary and she said not to try yet but I'm still going to after my appt with Dr S next week.

@comingsoon786110 I took gcsf on Monday and I felt so poorly yesterday. That combined with intense ovulation pains it's all feeling like too much to be honest.
We skipped dtd yesterday but will today. Started pred this morning. Really feeling like I can't do this for much longer. My anxiety is sky high and I'm resentful of the drug regime.

I'm sorry your appointment did add much. How do they decide its a mild case of endometrisis? I took doxy earlier this year for ureaplasma. How many losses have you had? Tommy's told me they generally do it after 5.

I hope your appointment goes well next week with Dr S.

Just quickly @star2022 do you final sex and cyclogest on the same day? I'm pretty sure I ovulated yesterday and today is the last scheduled day but supposed to start cyclogest tonight too? I did pred this morning. I prefer doing cyclogest at the front but not sure whether to do it tonight or just wait til the morning. What do you do?

Or if anyone else has thoughts? Thanks! X

@VenusStarr sorry I’ve just seen your message now as I got into bed. I don’t think I’ve ever done cyclogest the same day as sex I tend to wait until I’ve definitely ovulated so even if it’s like 2dpo to be on the safe side. I do the same with the pred too just in case it interferes with ovulation.

Also i came on today :( so here we go with another round. Yeah i’m going straight into another cycle, don’t quite know how I’ve been doing these back to back but i guess I just can’t wait around which is worse for me so end up just continuing. This cycle though I’m on an increased letrozole dose, so I’m keeping my fingers crossed that this is what does it for me this month 🤞 my cycle dates are usually 7-9 so pretty early on what about yours? How’s Dh by the way? Hope he’s recovering.

My plan is to do the full 6 months of this, and if still no luck then look to go back to ivf. I would need to do a 3rd retrieval which I’m not looking forward to so I’m just really hoping one of these next 2 cycles just work as I’m getting fed up with all these meds now! Need my life back! Keeping my fingers crossed for you xx

I'm sorry to hear about af ❤️ @star2022 fingers crossed the increased dose is the one 🙏 I'm temping as well and I've had a post ov temp this morning and my heartrate is up, so hoping we still caught it. Dtd Saturday, Monday and today. Will do cyclogest in the morning.

Dh is much better, he's finished his antibiotics from the infection and got a follow up next week. For some reason, he can't swallow impryl anymore since the recent surgery which was endoscopic 🫤 even chopped it up and it got stuck. His dna frag was borderline but he doesn't want to take it anymore.

We'd be looking at a third retrieval too. It's getting so hard to keep going. I'm bloated tonight, hate that my body is taken over by the meds and hormones 😪 thanks for replying xx

@VenusStarr they did a biopsy during my hysterscopy and this was the result. She said its so mild that some people might not even want to treat it. But to me, an infection is an infection. So i am going to take the meds just to clear up anything that I have in there.

I'm just curious does doxycycline effect any other meds you might be on? Because this is a cycle of 2 weeks for me and I'm taking hydroxy as well and God willing he starts me on tacro then I don't want all the meds interfering with each other.

I just peed off with RMC to be honest. Prof Regan is one of the top specialists and she doesnt seem to be doing anything. She has so many years of experience and every time i ask her something i get the most mediocre response.

Hoping your hubby feels better soon and gets his issue rectified 🧡

@comingsoon786110 I felt the same about Professor Quenby, gave us nothing. It's demoralising to just be told try again. It's not easy to do when you keep losing pregnancies. I'm sorry. Hopefully Dr S will have a plan for you.

I felt the same about taking Doxycycline, ours was a hidden infection but at least its treated now. They didn't say it would affect any other meds.

Fertility Friend has put ovulation as Monday 🧐 but I think it was Tuesday. So we're covered I think but at the same time I still don't have hope. Feel very deflated and I'm not sure I want to keep trying now x

Hey all sorry I’ve been so quiet on here. My first cycle on Dr S’s plan didn’t work. I know it’s only the first cycle but I was in a great headspace after 3 months off TTC and it wasn’t nice to have the familiar shitty feeling of a bfn and general feelings of failure it triggers. But feeling a bit better since then.

@VenusStarr im so sorry things are so hard and you’re feeling very deflated. You have been through so much and shown incredible resilience and determination, and you are so helpful and supportive to others.
Was your long term plan to try and do another round of IVF? Would you consider having a break from TTC for a month or so or do you think it would make you feel panicked? I just know how relentless and difficult it can be, and how a break (although forced) made me feel better. I hope your DH is doing better too. Do you have any holidays planned over the summer? Sending you a big hug xxxx

Hi @Lily1990 ❤️ I'm so sorry about your first cycle, it's really heartbreaking to go through it, you can't switch off because of the meds schedule and timings, creates a lot of pressure and tension. I hope you're OK. Do you have ovulation intralipids as well?

I've had an expensive week - one cat needed emergency vet treatment and then follow up care. She's got cystitis 😪 had to take her back today as she's still showing signs. My other cat has thyroid issues but her bloods showed potential kidney failure 😪 so I've spent £1000 just on vet care. Hopefully should get the majority back in insurance. But it's stressful.... if anyone has any tips on getting a urine sample from 2 cats, I'd appreciate it! 🙃

I'm undecided whether to go straight into another superovulation round. It cost £1200 this cycle with gcsf. But we can't do August as it's my birthday week I'd need the scan and I don't want the pressure. I think we've got one more ivf round in us, but need to save more ideally. So it wouldn't be til after Christmas I think.
I don't feel panicked in general about taking a break, it's more a general numbness that time is passing and we're further than ever away from it ever working for us.

Dh is doing much better thank you. We don't have any holidays planned but it is my birthday so think he's got something up his sleeve, maybe a night away or something.
What about you?

Hope everyone else is doing ok 💕 xx

Morning all. Hope everyone is doing ok. I did another gcsf on Friday, didn't feel as rough yesterday but had lower back ache and some twinges. But I think I'm only 5dpo today so too early for it to be anything other than progesterone. I just don't feel it's worked at all this month.
We've had a chat and we think we might just try naturally next month and August. I'm not even sure I'll have intralipids at ovulation - what do you guys think?

In other news, I went to zumba again yesterday and really enjoyed it. Part of me thought I should not do it as my heart rate does stay over 150 for the whole hour but i just thought fuck it. I'm sick of adjusting what I am doing on a maybe and it never happens.
Also, if you like Corona, their alcohol free bottles taste exactly the same.

Love to all ❤️ xx

Hi @VenusStarr hope all is well! Have been quiet as nothing has been happening over here. Have a plan for IVF in the autumn and in the meantime waiting for my follow up with Dr S on the 31st. Going on a much needed longish summer holiday in August, returning in September.

I know all too well the feeling of being deflated after so many failed attempts that you can’t see how it’ll ever work. But there’s always the chance that it will so keeping everything crossed for you. I have given up a lot for this too so know exactly how you feel.

Not sure if this is helpful but my friend who’s 46 and quite obese is towards the end of her second trimester now (donor embryo) and has been going on with her normal activities, whether commuting, international travel etc. especially during the first trimester and all was fine. Unless it’s extremely strenuous activity, seems to be ok!

Hope your DH is doing well. Sorry I can’t comment on intralipids as I’m still quite new to this. I’ll report back after my appointment with Dr S xx