Immune/NK cells - pred thread 29

[StillTrying10000]

Starting a new thread as the last was full.

Hi @Tango82 im really sorry for your loss ❤️ I've been under Dr S for 18 months and had 2 losses. I'm doing ivf now as can't conceive since I was diagnosed by him.
My first was a chemical and he recommended some tests which helped with our ivf window of implantation. Nect transfer was successful, saw a heartbeat but she died by the next scan. He wanted me to test the baby, so we had a long wait for the results. All came back normal, so next time we try, he's added in gcsf injections (as I'm already on the full complex plan with pred and hydroxy). So I would think he may suggest changes to your plan. When are you due to see him?

@Louweeze sorry you've joined us too. Hydroxychloroquine dose is 400mg a day.

I can't remember if I've shared on here, but after my hysteroscopy last week (no scarring!) we've been given the go ahead to try, but can't do an embryo transfer this next cycle. So we've decided to do a superovulation cycle, af should be here next week. Got all my meds ready and keeping everything crossed 🤞

Hope you're all well xx

@VenusStarr thank you 😊 I hope your current treatment plan gets you your rainbow baby xxx

@Naticle thanks for sharing your experience and congratulations on your daughter. It’s good to know there are more things to try moving forwards. I may have got my hopes up more than I wanted to this time.

@VenusStarr thanks for your reply. Sorry for your losses too. Good luck with your round of super ovulation! I have to go back on Wednesday for a second scan to confirm miscarriage although they were very confident that was the situation. Hopefully I can arrange to meet with him again soon after that. It’s just frustrating that time keeps ticking away xx

Hi ladies, just a quick post before I have to get back to work. I saw this workshop advertised, it's on Monday afternoon and the first talk is on reproductive immunology. It's on zoom and is free to register. Thought it might be of interest...

www.immunology.org/events/inclusive-research-showcase

Does anyone know if he ever keeps patients on meds for longer than 16 weeks? As I had one of my losses around that time the thought of coming off meds before 20 weeks doesn’t sit easy. Sure I can ask this questions at my consultation, of course, but I’m curious.

I’ve just booked my first appointment with so thanks for answering my questions and for your support to this point. It really has helped me make this decision 💛 xx

@MyEasterEggs I asked to be kept on Hydroxychloroquine past 16 weeks. I was too scared to come off. I got the feeling he usually doesn't do it and he initially said I don't need it, but then agreed. I took the last tablet an evening before delivery (C-section). I think he asked me to do blood tests for liver and kidney function every few weeks (or maybe every couple of months) and that was it. I delivered with a different consultant and he simply accepted Mr S' treatment plan (I started seeing him once viable, so around 24 weeks). Hope this helps.

Hi,

Does anyone know the criteria for going on hcq? I’m thinking of asking my clinic about it. As far as I understood it can’t do any harm?

I’ve had basic immune & thyroid tests resulting in - ANA 1:320 speckled, high thyroid antibodies (now normal after steroids) & higher than ideal TSH (now under 2 with thyroxine). Blood clotting tests came back normal, not had anything else tested. MMC at around 10+4 last year.

Will most likely be on steroids again for next transfer along with progesterone & estrogen. Any thoughts appreciated. x

Hi everyone! I'm new here, so a bit about me. My baby was sadly stillborn at full term due to medical negligence. After some tests I apparently have natural killer cell issues. I'm currently on Mr S complex plan (hydroxy, pred, cyclogest, intralipids, levothyroxine for underactive thyroid), and have not conceived after 6 months, so am considering super ovulation.

I'm currently on a break from the pred (as I've been on it for 6 months) but I just wondered whether anyone had tried to conceive while on a break? I'm terrified that I could miscarry if I did get pregnant on the break (and Mr S has strongly advised not to try), but at the same time, I do wonder whether I need to be on all of this medication, as I never struggled to get pregnant before, but after 9 months (6months on meds) of trying, I just wonder whether a break from the medication could make a difference. The cost of superovulation and stats of it working better between 4-6 months is quite stressful after 6 months of costs from all the medication and appts (especially intralipids!). If it doesn't work, I might not be able to afford being on the plan. I feel so conflicted, but I'm so desperate to be pregnant again!

I wondered if anyone tried to conceive naturally without the meds, and then if there is a positive pregnancy test, restart the medication from that point?

Hi @@jigglejiggle

I am so so sorry to hear about your baby. I really hope the negligence is being dealt with.

I am currently on my break too but I still had intralipids and was told I was ok to try. I don't know if that's different because I am on less meds - intralipids, Cyclogest and pred. As I said I had intralipids but will start the others if I got a bfp.

I was the same, thinking I wonder if the meds are stopping me getting pregnant, as aside from the fact I only have one tube now, it seems to be taking longer, even with the hinderance of one tube. I was also worried if I did get a bfp, about not taking the meds, but I think as long as you took them asap, you'd be ok. However as he's told you not to try, maybe that's not the case with some of your meds.

It's so so difficult with the cost. I've had 7 super ov rounds and am calculating in my mind what that would have been towards ivf. It's never ending, or feels it, because once you've invested it's so hard to stop.

I really hope you get your good news soon. Did Dr S suggest super ovulation as a good option for you? I know it's heart wrenching when it keeps not working, but maybe try a few more naturally after the break, and then consider it? At least it'll give you some time to see how you feel about the additional cost?

I'm saying that, but also know how hard it is when you want to be pregnant. I feel like I'm almost throwing the kitchen sink at it now, yet there is so much more money that could be spent. So overwhelming xxx

@MyEasterEggs if I ever get to 16 weeks again I will feel exactly the same about coming off them as that was when I had my later loss so I’ll certainly be asking.
@Louweeze its tricky as I’ve now spent £20k with Dr S on MC treatment and £40k on IVF with him, and am yet to have success. Saying that I’ve seen sooo many women have success under Dr S and I still think if I am going to succeed it will be as a result of his treatment as he is best in class. Also after looking at the challenges/impossibilities around surrogacy and adoption they really aren’t easy ways out, so it made sense for us to keep going down this route, even though we’ve spent WAY more money that we actually have. But then for us having a child is the main thing we want in life so it’s worth it. Would you feel comfortable living life knowing there was an option you could have looked at and not tried. Can you bank embryos now whilst you are young and have great quality eggs encase your choice or financial situation changes in the future?
Im 33 and have AMH 5, it’s hard to get eggs out of me but those we get are at least good quality due to being on the young side.
Good luck with your decision. Xxx

Hello, looking for some advice on Lubion… I’m having my 6th transfer on Thursday and consultant said I can double my Lubion as I’ve been worried one isn’t enough. I took my first exactly at the time told yesterday but when should I take the second daily dose. I’m reading that too much can have a negative impact on implantation so now I’m consider if I should hold off until after implantation. Is anyone on two Lubions a day? How do you time them and did you take two prior to FET or only after? x

@StillTrying10000 thank you for replying that's really useful. I know its just so expensive isn't it 😫 we've spent 25k on ivf so far which is literally our life savings and we've got nothing to show for it. But we are the same as you, literally cannot imagine our lives not being parents so we plod on I guess... my consultant in Bristol wants me to go up to 40mg pred for our next cycle but that seems very high to me, not sure if anyone has experience with this much pred?

Wrt lubion I have been on 2 a day but they only upped it (from 1 a day) when I started bleeding at 15dp5dt. I took it at 9:45am and 9:45pm. As well as utrogestan pessaries at 7am, 1pm, 7pm. My consultant in Bristol said next time she'd want me on lubion 2x daily from the beginning on our next cycle. I'm just not sure whether to stick with her or try something new with Dr S. Hope this helps x

@myrainbowjourney yes we're definitely doing something about the negligence but have had to pause on all of that as it's just become overwhelming dealing with the grief, the negligence and then this new fertility journey we've found ourselves on. We're just putting all our hope into this that it will work, but only time will tell I guess.

Thank you for sharing your experience, sometimes in the clinic it does feel like you're on your own, but surrounded by all these other women not knowing how their immune therapy journey is going, so its great to hear from you! I hear you, I completely get why you would keep going, it's just the hope that the next cycle will be the one if this one doesn't work out right?

In my appt with Mr S I think he could tell I was pretty desperate to get pregnant, so he thought superovulation was the next step. Did it take a few cycles to figure out the right dosage of medication for you? Dr S has said I would need a double dose of Letrozole for my first SO (after doing scan in my last appt), so will see how that goes.

How is everyone doing?

I got a very faint positive on an early pregnancy test on Friday at 13dpo. I've tested daily since (I'm 15dpo today) and the line is still very faint and hasn't really progressed much so I'm not sure it's looking very promising, but I'm crossing my fingers that it's just because it's still very early days 🙏

Hi @Sezmarelda1 I've got everything crossed for you. Did you track ovulation this cycle? Can you remind me of your treatment plan. Are you still under Prof Quenby?

I am doing superovulation this cycle, started letrazole and estrogen this morning. My af started late afternoon on Friday, so I let the clinic know but my period has been very light compared to last month. Possibly due to the hysterocopy. I've got my follicle scan next Monday so I'm really hoping this will go smoothly. I'm very anxious today. We haven't ttc in a year due to ivf. I've got acupuncture on Thursday and she gives me little ear buds for anxiety.

I hope everyone is doing OK? Xx

@VenusStarr I’m glad AF turned up. Rubbish you are getting anxiety now after so long, there’s just so much pressure. I’m pleased you have the acupuncture to focus on. I’ve still never tried that.

@Sezmarelda1 I’m sorry it’s not getting darker for you yet, I really hope it does progress soon.

Im only 3DP5DT, it’s totally crazy but I got a positive test last night! A visible without squinting line! However it’s fainter this morning. OH is saying chill out as it’s still wayyy too early but I’m just in those loosing my mind days at the mo. If this Tacrolimus hasn’t worked we really are at the end of the line so that devastation is just sitting right there ready to hit home any second. I’ve got 72 first response tests arriving today 😫 I hope everyone else is doing okay xxx

Oh @StillTrying10000 ❤️ The tww is so, so hard after ivf. I was in denial in my last one and just couldn't face testing at all. Can you and your oh go out for a few hours to distract you? There is no switch off sadly, but maybe having a few nice things to keep you occupied can help. Sending you a big hug. Xx

I'm fairly confident when I ovulated as I was using OPKs and tracking my basal body temp. I should be 16dpo today but my pregnancy test is still very faint so I'm not holding out much hope, although I feel really nauseous so who knows! I'm on Prof Quenby's treatment plan, which for me is progesterone twice a day + 20mg prednisolone daily, both from a positive pregnancy test.

I'm not so knowledgeable on IVF @StillTrying10000 , is 3DP5DT equivalent to 8 days from fertilisation? Sorry for the possibly silly question! I have my fingers crossed for you!!

I've ordered more pregnancy tests too, despite having 5 left in my drawer I've decided I want to try another batch just in case the ones I'm using are what's causing my lines to be faint. The ones I have have a use by date of July 2022 so maybe they're getting a bit old...

Hi everyone

Hope you're all doing ok.
@Sezmarelda1 keeping my fingers crossed for you.

Does anyone know which clinic CRP uses for IVF? They just said Kings when i asked at my last appt but when i google it there are a few different places. Is it Kings Fertility in Muswell Hill or Kings College hosp?! Thanks :-)

I'm sorry you're test's are still faint @Sezmarelda1 possibly later implantation? Have you started your meds now? What tests are you using?

@Tgrf55 good to hear from you. I thought Kings Fertility but I didn't know there were 2, so I'm not sure. Is that your next step now? I know the scans are done at crp. How are you feeling about it?

@StillTrying10000 how are you today? Hope you're feeling as best as you can.

I've got my follicle scan next Monday. Feeling a bit rough today, although I did have a couple of glasses of wine last night, so that and estrogen is probably not a good combination! I know I probably shouldn't have had a drink, but dh and I had an impromptu night out together.

Hope everyone's OK x

@VenusStarr I hope the follicle scan goes well, will you be cycle day 11 by that point? An impromptu night out sounds very nice, and well deserved too!

My anxiety is through the roof today, I'm having the most unproductive day at work, I just can't concentrate at all. I started my meds a few days ago so perhaps the pred isn't helping with the anxiety, I know that's a common side effect of pred. The pregnancy tests are just internet cheapies, but sensitive ones (10 mIU). I've used them before and always found them to be ok. I'm not sure whether to just sit tight and test again in a few days, go to Boots and buy a different brand of pregnancy test, or see if my GP will agree to test my hCG levels...slightly frozen by fear I think!

@VenusStarr i wonder if its the Kings at Muswell Hill then. I think we are going to do 1 more super ov round and then IVF. I'm impatient and my due date would have been next week from my MMC pregnancy. I've had to wait so long to recover from my ectopic pregnancy surgery (2nd pregnancy) i just feel like im wasting so much precious time. I only have 1 tube now too so i think IVF may be the way forward for us now.
Are you doing super ov this month? Dont worry about the drinks - its needed sometimes!! Xxx

Hi all,

I've been a little bit quiet on the group recently whilst I've been waiting 6 weeks for the Laparoscopy op. All went well last week removing the cysts and they actually found some endometriosis (which didn't show up in any scans) and I had abdominal adhesions which meant my bowl had stuck to my abdomin. Bit freaky but hopefully they have fixed it now?! It's been strange waiting so long in limbo but glad we can start to move on thinking about options again. We were sure we wanted to go for ivf next but now been advised against it by Dr Gordon due to dh sperm having some fragmentation and ivf/icsi could cause more damage. He has suggested IUI and Dr Jan suggested try naturally for 3 months. Waiting to get an apt with Dr S for consultation to discuss options so will see what he says!!

@StillTrying10000 and @Sezmarelda1 Ive got my fingers and toes crossed for you that the lines get darker and you get some good news. It's so hard not to over think everything but try to distract yourselves where possible.

@VenusStarr ive got my fingers crossed for you too this month. Go letrezole go! I haven't tried acupuncture, it is supposed to help w/ conceiving? You'll have to let us know how it goes.

@jigglejiggle I am so sorry to hear you've been through that. It must have been devastating. You are not alone at all. I'm amazed at how strong you are trying again - you are superwoman. I felt the same under the medication, seems to be much more difficult to conceive but I think stress also plays a part in this and its very difficult not to feel additional stress/pressure when trying on the plan. Superovulation might be the answer, it feels like different things seem to work for different people. Good luck!

@Louweeze the costs are so overwhelming sometimes. It's actually sickening and feels so unfair when you try to compare with people who spend nothing and find conceiving so easily. (I thought I was going to be one of those smug people when we first conceived on first try but I couldn't have been more wrong!).

@89Hope thats such good news to actually maybe have found the cause. I really hope it can all happen naturally for you now. Do you feel lighter now? Even potentially excited now?

Today I’m 4DP5DT I have the faintest positive today but it’s a fraction darker than yesterday. So scary to feel that hope start to creep in. I’m just praying I can trigger a digital test in the next couple of days but the terror of the red wipe every time I go to the bathroom is awful. The line between experiencing heaven or hell is so thin. Ahhhh!! 🤯