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!

@Newbeginnings22023 that is strange. My rubella came back as negative despite the fact I had my MMR too! Must have a weird immune system!

Hi @Newbeginnings22023 glad you've got the all clear. Have you managed to arrange an appointment with Dr S to chat about the humira? It's all a bit of a minefield isn't it? Hope you can get in soon to discuss next steps.

@Privatemedical246 thank you. I hope your appointment goes well this week. Let us know how you get on.

Feeling very disconnected and fed up. Not sure how to shake it off. I'm still doing things I enjoy but everything feels flat. Hope everyone is doing ok. Trying to avoid father's day by going to the cinema... x

Hi everyone sorry its been so long! I have been moving house so it's all been a bit hectic (a good distraction!) and the first time in years i haven't googled a single thing during my 2 week wait! ha! I've not had a chance to read through all the messages but I do hope everyone is okay, I will get reading them soon as I've only just managed to find my laptop while unpacking.

Sorry to hear you're feeling flat @VenusStarr where are you in this cycle now? I found out the other day my cycle failed again so onto SO number 4 now.. AF due any day now so I know the feeling. I hope you enjoy the cinema and it helps you feel a bit better. I have been drowning my sorrows by buying loads of home furniture instead lol xx

@Privatemedical246 that’s really interesting! My local NHS respiratory department are saying that apparently a third of the world’s population test positive for TB and it isn’t a cause for concern so long as there are no symptoms and x rays are clear. Don’t know much about Rubella and how the testing works, fascinating lol! But yes keep us posted on your appointment xx

@VenusStarr thanks for checking in. I’m waiting for my local NHS doctor to ring me next week with the repeat blood test result. If it’s positive then they will probably say I shouldn’t take the humira injections as a precaution in case it reactivates TB (the Dr has already suggested this in my initial appt). I’m hoping I’ll see Dr S the week after to convey all this and hopefully come up with an alternative plan.

Sorry you’re not feeling your best at the moment, it’s perfectly understandable. We
go through so much and yet try to “enjoy” our lives so infertility/RPL doesn’t consume us. The cinema sounds like a really good idea xx

@star2022 sorry to hear it, hope your next SO has a positive outcome xx

@star2022 I'm sorry to hear superovulation didn't work this time. When do you think af will come? Are you going straight into another round?
Great news about your move and it being a good distraction. We've got to remortgage later this year and the news is petrifying me. I've booked an appointment to look at options. We wanted to borrow a bit to do our drive as its really unsafe in winter. But worried about monthly outgoings and still affording ivf. Feel resentful that other people don't have to think about these things.

I'm cycle day 7, I think, so judging by last month, ovulating imminently. I'm not tracking anything. Dh is really struggling with pain and discomfort. The cinema was a good distraction 🙂

@Newbeginnings22023 I hope that you get your results this week and a plan 🙏

Made the mistake of reading a thread this morning about someone struggling with infertility and recurrent loss and a 'helpful' poster said that maybe life is telling you being a mum isn't meant to be and it's nature's way of telling you that. Oh and there's other ways to be fulfilled in life. Or just adopt 🙄🙄🙄

Hi all

I haven’t been on properly for a while so lots of catching up to do! I hope everyone is doing okay 💖

I wondered if anyone else found prednisolone really impacts your mood, energy and sleep? I did have it in my last cycle and I remember the insomnia. I started back on it at the weekend as I’m heading into my fourth IVf attempt and this time my first frozen transfer.

Feeling very lethargic and down today! Not sure if it’s the drugs or just going into another round. Doesn’t help that my grandmother who I’m super close to is on end of life care. I don’t think she will have long left.

The 2 scenarios together are just a bit stressful 😑! But that’s life right.

But if anyone has any tips for coping with the prednisolone side effects I’d love to hear them.

have a good day!

oh @VenusStarr thise are my favourite types of contributors (not)! How insensitive can people be? No one will ever understand infertility unless they’re on this journey themselves.

A little update here: I met the TB specialist who confirmed I have latent TB disease which means I shouldn’t take humira unless I’m willing to be on antibiotics for six months…no thank you! I’ve let the nurses know at CRP and I should hopefully see Dr S soon.

Glad you enjoyed the cinema and hope your DH feels better real soon xx

These*!

@Newbeginnings22023 I know, I need to just avoid those types of threads as they wind me up!

I had no idea you could have latent TB, glad you got checked out. 6 months of antibiotics doesn't sound feasible! I hope when you see Dr S you have a suitable alternative for your protocol.
Dh is slowly getting there, he had a laproscopy and his belly button is quite sore, think they stitched it crooked! But I think going through the muscle must just rake longer to heal.

@Ems123456789 I'm sorry to hear about your grandmother ❤️ I find I have more energy on pred, but also find it affects my sleep, I tend to drop off ok but wake so early. In combination with progesterone, I just feel a bit out of it and off. I also find I feel like my heart is racing, although I don't think my resting heart rate is particularly higher on pred. I always make sure I take pred as early as I can, with my breakfast.
I hope you're feeling OK about your FET, is it medicated?

Hope everyone is well xx

Hi everyone.

Hope you don't mind me joining here. Was previously a Dr Shehata patient 5 years ago about 4 recurrent miscarriages and had success with a DS. Wanting to start TTCing again and going to try without treatment; but want to be on the vitamins he suggested. I have my previous plan still, but I wondered if he still suggest impryl for the male?

sending luck and love to you all!

Hi @VenusStarr thanks for this. I know, very surprising and even more that a third of the world’s population probably have this! Appointment now booked with Dr S on 31st July so a long way to go, but he’s away for two weeks in July. Oh well.
Ouch that sounds painful! Hope he’ll feel better real soon. I had a laparoscopy done in 2020 and I remember it took a while to heal as well.

hello @Unicorn25 welcome and congrats on your DS, it’s nice to see positive stories with Dr S. He has suggested Impryl for my husband because of his poor DNA fragmentation.

Hi all, I had my appintment and slight difference in what I expected. I thougut we be able to start trying straight away but Dr S wants me to have idacio/humira first and retest after the 2 injections and see if my levels have gone down. I know its good we have a plan but I can't help feel disappointed that time is going so slowly with all this waiting and we are not even actively trying.

Is eveyone on intralplids every month whilst trying? I'd read on some forums it was from postive test. We will need to weigh up finances versus if we can do that every month. Most of the other drugs I was getting on nhs so will only be some of the private vitamins and then the hydro and predisclone I'd have to purchase alongside infusions so it may be after so many months we have to stop in the infusions and just use my nhs drugs and what we can afford to purchase.

So pleased to have people I can chat to here who understand what the hell I'm talking about as my friends understandably don't really know as it is so complex.

Hi @Privatemedical246 thanks for the update and sorry it’s not what you expected. As you know I was told the same thing which I agree means more weeks/months waiting to start treatment. I have the added hurdle as you will have read of latent TB so I have to wait until end of July only to have a backup plan for the humira. But I’m also telling myself I’d rather get specialist care than have another loss on my own. Just my way of saying I understand how you feel!

Sorry can’t answer the intralipids question as I’m not there yet.

It’s lovely having this community who understand the situation because as you say, it’s very complex!

Hi @Privatemedical246 I'm sorry you've got another delay. My cytokines were OK so I didn't need humira. But being delayed for other reasons, I know how frustrating it is.

My plan is intralipids at ovulation and has been since the beginning. It is expensive, especially as my GP won't prescribe anything. I kind of think that he doesn't use it in his NHS clinic at all, so maybe it's not as important. But saying that, my situation is so complex and I've had losses on that protocol, that I don't feel comfortable not doing them. But I'm sure if you speak to them, they'll understand the cost pressures.

I've just realised ove been under Dr S for 3 years in November 😪 I'm pretty sure I've ovulated. So hopefully we can do superovulation in July. Just feel very hopeless at this point. Dh is still really struggling with his recovery. Feeling very bitter that we've essentially had 6 years of health issues between us. It's exhausting. I went out with my sister yesterday and hearing how full and active their lives are with their kids, just makes me feel really sad that we don't have that and it's unlikely to happen. Jeez. Sorry this is depressing, sorry 😔

Hi everyone sorry I keep dipping in and out at the moment, still been busy with the house move. Nice to see some newbies in here!

Just a quick update from me, I stopped all my meds at 10dpo last week wednesday as I got a BFN but I still haven't had my period! It's really stressing me, I'm definitely not pregnant as i've been testing (and wasting even more money on these tests 🙄 ) Usually I start within 3-4 days of stopping cyclogest. The only thing I've had is brown discharge only when wiping, not enough to reach my pad from the day I was meant to start my period. It's definitely not implantation as its far too late for that. Just wondering has this happened to anyone else? Is this the letrozole or steroids messing with me? Or could it be a cyst? Or the stress from the house move maybe? Nurses have told me to keep monitoring until next week and keep doing pregnancy tests. Just FYI I am now 19dpo

I just want to get on with my next cycle and this is just adding more stress to an already stressful process!!! Argh why can't things be straightforward?!

@VenusStarr I'm so sorry dh is still not feeling great, and thats really tough to know you've been under Dr S for 3 years 😞 Its really frustrating when other things get in the way of being able to crack on with the cycles as it just prolongs the journey even more doesn't it. I also totally sympathise with you about the kids thing and sister, I have 2 sisters both with kids and all I see is activities out with the kids, it can get super depressing. I just hope your time comes very soon and that you're able to start a cycle in July 🤞 xx

Oh I am so happy to have found this thread...
3 miscarriages at 5.5 weeks (2020, 2022, 2022) and was recommended to Dr S by SIL.
First went at Christmas, did all the eye wateringly expensive tests + humira injections but felt excited to have a plan, hated being told to wait though...
First 3 cycles - pred + cyclogest + intralipids ... Failed, felt so demoralised. Introduced to Superovulation so felt good to have a plan again but my god its hard to plan when to go for the SO scan, has anyone found that?
SO 1 - failed
SO2 - my cycle completely changed & became shorter and really we should have gone earlier for scan because when we triggered egg it was 25mm...I knew that would fail which it did...I feel they should have told me not to trigger rather than waste the money on the jab and those intralipids...
SO3 - went slightly earlier although nurse said I should go later, egg was 24.2mm and I thought this isn't going to work, it's too big again... We shouldn't have triggered. But...Pregnancy test was negative at 11dpo but no period came and had implantation spot 13dpo - I thought that was ominous (too late basically)... Anyway I started having hope because I got past when I normally miscarry but went to 6week 3 day scan and nothing seen, paid for the hcg tests and another scan to be told its not viable.... All these costs are mounting and I wasn't really expecting to have more losses under specialist care...or for it to take so long!

I'm so annoyed they triggered this cycle because I had just worked out for SO4 when to go for a scan in hope my follicles would be smaller. Instead I'm waiting to miscarry which hasn't happened yet and have to start it all again, waiting and then working out cycles etc. Up to now I've closed my eyes to costs but can't do that forever.

Sorry for my terribly long rant but I've only heard success from Dr S and I just feel my body is failing me & why can't it work for us. However I am determined because its all I really want.

Sending you all lots of love and strength and I hope you don't mind me butting in to this group! Xx

@Deerdancer34 I'm so sorry for your losses ❤️ I'm glad you've found us here.
I'm sorry you're currently going through a loss, its completely heartbreaking to find a reason but the treatment doesn't work 💔 this has happened to me too. I think it can feel very isolating as most people seem to have success on their first pregnancy with him.
I've done 3 superovulation cycles and the first 2 were flops, I just didn't respond well and it delayed ovulation for me. The third one was textbook - I take estrogen as well because my lining doesn't like letrozole but my body starts to try to ovulate without the trigger which shouldn't happen on estrogen. It's frustrating. We're hoping to do another cycle next month after a long unplanned break as dh has been ill.

What's the plan for managing this loss? Thinking of you x

@star2022 good to hear from you. I'm so sorry this cycle didn't work 😞 any sign of af for you?
I'm pleased you're getting absorbed with your new home, sounds like a good distraction.

Dh and I had a chat and he wants to do superovulation next cycle. He struggles with the timed / pressure of the schedule though. I hate what infertility and loss has done to our sex life 😪

I'm 40 in August and I've decided to aim to lose 7lbs by then. I've actually lost half a stone since joining the gym in November. So hoping if I focus on my diet, it's achievable.

How's everyone getting on @Newbeginnings22023 @Privatemedical246 @comingsoon786110 @Danni8 @Ems123456789 @HopefulH @Lily1990 @Zest11 @nottsgdns 💕

Hello all, I've been on a break so haven't been on Mumsnet, so sorry if I haven't replied to anyone.

We had a real flop of a cycle last time. It was an SO cycle and my body didn't respond at all which was depressing - so we decided to take the rest of the cycle off as a break. It was amazing to have time off from all the meds and I started to feel like myself again. Really does make me question how long I want to do this for...

I think I posted about my alarming kidney level results but can't remember. This is still ongoing and I'm having more tests this week. It might be I can no longer continue on the protocol anyway if it's damaging my kidneys for whatever reason. I'm also having all my iron levels etc. tested as I think I'm anaemic too.

I'm at CRP tomorrow for another SO appointment - this time with Dr S - which I'm dreading! I'm not convinced my ovaries have done anything this time either. I've been on 12.5mg Letrozole the last two cycles and I'm questioning if this is too much for my body, but CRP assured me it doesn't work like that.

@Deerdancer34 I'm so so sorry for your loss on the protocol (and all your losses). Just sucks so much. I too have had a couple of SO cycles when they have triggered already big follicles and they assured me that if they were not of good quality they more than likely wouldn't fertilise anyway but it still made me very nervous. I'm so sorry this has happened to you. I hope you can gain some comfort from knowing you did everything you could to give this one a chance. How are you managing the loss?

@VenusStarr I really hope you can get a cycle in this month. You have been so patient and resilient with everything that's been thrown at you. Hope your dh is feeling much better now? When you're doing SO do you plan in a lot of DTD? We're on SO cycle 4 now and I must say our enthusiasm for DTD has waned considerably.

@star2022 this is exactly what has happened to me on my last two SO cycles and it makes no sense! My cycles went on to 18/19dpo too and the clinic had no explanation. I thought maybe my body couldn't rid itself of the extra progesterone? Ms Edge said I could try without cyclogest next cycle to see if this makes a difference but she was pretty adamant it wasn't the steroids... I'm not convinced. My last cycle, which was anovulatory, went on for 40 days! Which has never happened in my life before. Before I started at CRP my cycles were pretty clockwork at 27/28 days. Big sigh. I hope your period has now arrived? I think the stress of not understanding why it's late can also make it later, so I'm trying to just chill now and accept I have no f**ing clue what's going on anymore!!

Hoping everyone else is doing okay. Thinking of you all. It's really nuts what we all have to do and put our bodies and hearts through - and whatever the outcome - you are all incredible! X

Thank you so much for your replies, it feels reassuring to know others who are going through this at Dr S.
For this loss, It's odd because I've had a little bit of bleeding but with my other losses it just came like a normal period, I just want it to get started and be over with. I'm going to EPU tomorrow at hospital to be checked over & fingers crossed I don't need any medical intervention. Maybe because I got a little further, my levels are coming down slower so its taking longer to miscarry? I have no clue, not experienced this before!
@VenusStarr
I'm so sorry you have to go through all this rubbish too. I honestly thought going to Dr S would be my answer and it would work! Did you have a loss on SO? Does he tell you to wait because I can't bear the thought of being told to wait again. I'll wait until after my miscarriage and then my first period but I don't want to be told to wait several cycles!

Crossing everything for your next SO cycle 💪

@HopefulH How many tablets are 12.5mg of letrozole? They were going to put me on 4 on my next one but I guess I'll have to have another expensive appointment to discuss next steps, when tbh I just want to get on with another SO... My last 2 cycles I only produced 1 large follicle, so it's interesting it doesn't work how it should for everyone... Do you think they should be triggering us when the follicle is too big? I nearly declined the last one but thought they would have said not to do it if they thought it was pointless but maybe they don't!? Dr Edge didn't seem to think it was the follicle size when I said I think that's why this didn't work but I personally feel she was covering herself a bit...
New cycle, new chance, deep breath and I'm praying it goes well for you this cycle 🙏

It's a real relief to be able to talk about all this protocol stuff here because no one understands what I'm going through & I was quite sceptical about all this at the start and whether we were being led up a garden path but it's amazing what you'll go through for something you want! We have got this ladies, you are all more brave than you'll ever know 💗

Mixed results for me today at my appointment - only one dominant follicle and I was on 12.5mg letrozole. But at least there was one. Also my lining is very thin.

I'm being out of Gonal-F next cycle. Anyone know how expensive this is to buy? Is it cheaper from other places besides CRP? It says I need 150 units cd 2-7 supply: 1 x 900 units penfill. I have no idea what that all means? Xx

Thanks @VenusStarr It’s my first medicated frozen transfer.
I have been on oestrogen, clexane, prednisolone, now progesterone and then I’m going for an intralipid infusion on Wednesday before having my transfer on Friday. It’s a good embryo so I’m really hoping it works but having miscarried a few before it’s such a nerve wracking time. It’s the only frozen one I’ve ever had so if it doesn’t work it’s back to the drawing board.

I saw your comment re sex life. I totally get it! Feel the same. We did actually have a nice holiday in May where sex felt more normal but even then I was still timing it with ovulation. Congrats on the gym routine! It’s good to have something to work on.

Am I right in thinking you are gearing up a super ovulation cycle? I’m not as familiar with this as I’m not under Dr S.

Hi all, yep @VenusStarr and @HopefulH AF arrived on saturday a whole 9 days later!!! Can't believe it, at one point dh was even hopeful that we may have been pregnant, but of course its too good to be true isn't it! I'm also super annoyed because I tried booking a scan for next week monday which is my day 9 (I've been told to book a scan 7-9) and obviously can't do the weekend so monday is my only hope - and yep CRP is closed as they are all at harley street. Its just typical, always something in the way. They've told me come in on day 10 instead, but this month when I went on day 10 (as day 9 was closed again!) i had a follicle that was 30mm! So it seemed like it was too late even though they still triggered me. Not sure what to do, whether to go in on tuesday or just do a SO cycle at home without the scan - has anyone done this before? If so, did you still take the letrozole? I'm due to start it tonight..

@HopefulH glad you still have a plan in place, i'm sorry I have no idea about the gonal f but i really do hope that bumps things up for you! x

@Deerdancer34 I have the same concerns as you regarding triggering at the size they do. It seems they have no cut off? How many cycles have you done? I'm on SO 4 now.. such a long process. I'm so sorry for your losses x

@HopefulH I was going to ask if they'd not suggested gonal f for you. That was my jext step. It's difficult to get hold of (by me) so I think it would be cheaper and easier from crp. They would charge about £400 but I was getting quote of £600-900! In the end I responded ok to 7.5mg of letrozole. I'm with you, I'm not sure my body pikes high doses of hormonal meds. In my ivf cycles, I regressed on higher doses of estrogen.
Have they put you on progynova for your lining? When do you trigger?

@star2022 9dsts is torture - do you track your temps or anything? I'm sorry you had that. I'd do letrozole today and part of me would be tempted to not go for the scan, but monitor at home with opks. What dose do you take? Although, your follicle was big at 30mm, I wonder why you didn't ovulate on your own with that size? Ugh. It's a minefield!!

@Deerdancer34 both of my losses were ivf, since I started treatment with Dr S ive not had a natural pregnancy. But we've got no embryos left now and we spent all last year trying to get to transfer and had lots of setbacks, so superovulation seemed like a good compromise.
How did you get on at epu?

Keeping everything crossed for you @Ems123456789 🙏❤️
Yes trying superovulation again next month 🤞

Lots of love all xx

@HopefulH I forgot that you'd asked about dtd. I try to get us to aim for every other day but last superovulation it ended up that we did every day for 5 days and had done a few days before (am conscious of sperm dna fragmentation) so I actually think that was too much. So can see why dh hates the schedule 😒 not doing that next time!

@VenusStarr It honestly was torture!! I don't monitor my temps (used to) but I felt like the weather didn't help last week as I always woke up feeling hot anyway. I started my letrozole last night, I'm on 5mg so 2 tablets a day. I put forward the idea of doing the strips at home myself to hubby, and he was having none of it 😂 He's always telling me off for wanting to do my own thing rather than follow the protocol so we've stuck to the plan now and have booked in a scan next week. It'll be SO 4 for us, so he's adamant that these next 3 cycles will be important and that we should stick to the plan.

I also thought the same thing about why I didn't ovulate on my own last month!! I had a follicle at 30mm, 24mm and 16mm so I had the trigger the same day. Very unusual though as i never felt any ovulation pains even with trigger which makes me wonder if that's why my period was delayed. Either way, I just feel like these meds are messing up my cycle so much ergh.

When do you start your letrozole? And you're definitely doing SO this month right? 🤞🏼x