Immune/NK cells pred thread #31

@VenusStarr hang in there, it’s a stressful time and for sure overwhelming, but you’re giving yourself the best chance and I’ll be thinking of you the coming weeks and wish you the absolute best with this cycle ❤️

Indeed albeit terribly frustrating on one hand, knowing you don’t appear to have a chromosome problem is a huge box ticked on the positive outcome card x

Hi @VenusStarr I also had an MMC two years ago but we didn’t test it (no one gave us any guidance on what to do with it, so frustrating). Really sorry for your losses. I think as painful as it is, somehow knowing they’re not all due to chromosomal abnormalities provides some relief. Thank you ❤️ I’ll keep you posted after Wednesday.

All the best of luck with your next cycle ❤️ it can be overwhelming at first, but having just completed a fresh cycle in November, I will say that it gets easier once you start and adapt to the routine xx

Hope everything else is doing ok xx

Hello @VenusStarr thank you, I felt really good after seeing the results :) I feel maybe being on his protocol helped bring my levels down (so prednisone, intralipids etc.). I’ve been on the complex plan for a couple of months.

My next step is a follow up with him on Wednesday to see what he says about Humira then an immune plan for my next transfer in the new year. He hasn’t said whether my protocol should change yet, hopefully he’ll be clearer on this on Wednesday. He also said all these chemicals (I’ve had 4 now) can’t be linked to chromosome abnormalities, contrary to what I thought.

Good news about your meds. How do you feel about it all? Are you starting with your next cycle then? Xx

Hi @Lily1990 thanks so much for your thoughtful message. Keeping everything crossed for you this month, fertility and job wise ❤️

Incidentally, I just received the blood results and thankfully, my TNF alpha levels dropped to high normal, so within the range but at the very end. Last time it was way above the limit, so I really don’t think I’ll need Humira based on my new results, I hope Dr S agrees but at any rate I’ll push back. He seems reasonable enough though! So that’s good news at least for now.

Hi @clhiu really sorry to hear about your chemical pregnancy 2 years ago, that must’ve been really hard with people around too. Hope you get to DTD next month, I know how stressful it can be with people there, but hopefully you’ll make it work.

Hope everyone else is ok xx

Hi @Lily1990 nice to hear from you. Thanks for acknowledging the pains of infertility over the Christmas period, you couldn’t have put it better. I did have a loss a couple of week before Christmas 2 years ago, it was my second miscarriage a first chemical, it was the weekend we celebrated fake Xmas with dh family and my brother in law and his girlfriend cane to stay at ours. I tested positive in the morning, a clear positive so I was over the moon to have fallen pregnant again quite easily after the first MC. 24 hours later I started bleeding and I knew it was over, the worst part was having to hide it in front of everyone else and try to enjoy the celebrations, it was so tough. But that experience aside, you hit the nail on the head when you said that it’s the feeling that at some point one might have imagined having their baby at this time or in my case I’d envisaged sharing the happy news with the family a couple of times like a Xmas present, but that never came to be and it hurts. This time last year I just did my only ever IVF round and was waiting for the PGT-A test results.

Sorry to hear about the effects of the Pred, I really hated it, the insomnia and palpitations on top of the PT anxiety it’s a lot. I hope you get at least one bit of good news, either the job or a BFP, but really both because you deserve it.

I’m ok thank you. Just waiting for AF next week so we can go back ti trying again. I definitely missed my fertile window so that I didn’t bother with any Cyclogest or Pred this month and even went ahead with a smear test a few days ago. Already stressing about next month though and brother in law and gr are coming to stay around the start of my fertile window and we have a really noisily bed so worried that we won’t be able to have intercourse and miss again 🙈

Hello everyone, I hope you’re all doing well. I know this time of year can be very hard. I haven’t had any losses at Christmas thankfully but I always think how special it would be if pregnant or with a child, and feel sad another year has gone by and I’m still stuck in this situation.

I had several days last week of EWCM and very nearly positive OPKs, so wasn’t sure if I ovulated, only to then have a strong positive OPK a few days after on CD25 (so didn’t miss intralipids). I’ve been doing acupuncture for 2 months now in the hope of bringing my ovulation forward but it hasn’t worked, which is frustrating. Now in the TWW and having insomnia from the pred, and feeling anxious about testing already even though I’m only 2DPO. I’m also waiting to hear if I got a new position I interviewed for at work too, and the fear of being rejected from that and getting a BFN at the same time is making me feel depressed!

How’s everyone getting on? @VenusStarr how are your IVF preparations coming? Will you start egg collection in January? Well done for paying off a big chunk, I understand how scary that is. How are you feeling about it?

@Newbeginnings22023 that's a difficult situation to be in, deciding whether to take the Humira and risk reactivating TB. I think it’s a great idea to repeat your blood tests though and get a better idea about if your TNF alpha is still high to decide what to do. Did you get your results yet? I didn’t have any side effects at all from Humira, but appreciate your case is more complex with also having to take antibiotics.

@clhiu how are you doing? I’m really sorry you missed a cycle, that’s very frustrating. Are your cycles a regular length? Hopefully it won’t be too long before you get to try again.

xx

@VenusStarr ahh IVF admin and finance hell - I know it all too well! I’m glad you’re nearly there though. Hopefully you can relax before you begin to take your mind off things. Fingers crossed you get the result you’re hoping for xxx

Hello, hope everyone is doing ok ❤️

@MotherOfShihTzus sorry to hear about your experience, that’s frustrating. Don’t have any advice to give I’m afraid but I would definitely challenge them and the process.

@Lily1990 I would agree with @VenusStarr on this one, I’d give the intralipids a miss too if it’s a challenge to get an appointment within the recommended timeframe.

I had my follow up with Dr S today. He feels because my TNF alpha markers were high in the first place that I should really be on Humira to increase success, I avoided them because I have latent TB and a major side effect from Humira is reactivating latent TB. So his suggestion was to take Humira and latent TB treatment (strong antibiotics for 3 months) at the same time. Feels like a lot of medication and time wasted, but I could be arguably wasting time now by avoiding this route and going through repeated failed cycles.

My biggest worry is all this medication with serious side effects. I asked him to repeat my TNF alpha test before we make any decisions.

Thoughts anyone? It’s really hard :( ❤️ and also if anyone has success stories using Humira, this may encourage me to rethink…

Thank you @Lily1990 . I’ve been very good at making sure DH and I would always be together at ovulation for quite a long time, but that’s just another of those things that’s stopping me for making plans and living my life as I want to so this time I took the risk, I tried timing it as best as I could and it would have worked if I hadn’t ovulated early. Trying not to beat myself up about it too much, telling myself it’s just one month, but you know what it’s like and I cannot stop stressing a beating myself up about it now!

Hello @VenusStarr 😊. I had a really obvious positive LH test this morning so I think I’m almost certainly out, trying to stop myself from obsessively thinking about it as there’s absolutely nothing I can do anyway 🙃.
oh, the signing of the paperwork stage! when the real cost of everything becomes gradually clear, fun times! You must be feeling good that you’re starting soon though, I wish I could afford more ivf. I hope this stressful stage is over soon. x

@MotherOfShihTzus welcome! That sounds extremely frustrating, I'm really sorry. I'm afraid I don't have any experience with that but agree it's not fair you have to pay when it seems the clinic have messed this up. I'm confused about how they can't tell you for sure if you ovulated too - they should be able to clearly see the corpus luteum in your ovary if so. As if you didn't, you could potentially try naturally to catch ovulation?

@clhiu I haven't had EWCM 7 or 6 days straight in a row before ovulation, but I have had it for the odd day or so maybe 8 days before and then it dries up for a few days. But I have PCOS so I think my body starts to gear up to ovulate and then doesn't. I really hope your body holds off in time for you to reunite with your DH! I know how frustrating this must be - being apart can be stressful for this reason when TTC. I once travelled to my partner's work conference hotel so we didn't miss it, and then didn't get pregnant that month!

I'm actually in a similar boat where I think I may ovulate this month a couple of days before my intralipids, and don't think I can go any sooner because of work commitments. Does anyone know if it's pointless to have intralipids on the day of or after ovulation? I will email CRP asking this too.

Another question: I just got some blood test results back to send to my IVF clinic. My prolactin is high (653 and 109-557 is the reference limit) and this is the fourth time it's come back high like this. Does anyone know if this is something that should be treated? A previous doctor told me it's a sign of PCOS and not overly high so wouldn't be worried, but it seems to be linked to miscarriages from a google search.

Love to all x

@HopefulH that sounds like a sensible plan and you're right, if your immune system is low anyway, it should have less of an impact on potential pregnancy I'm sure. Fingers crossed for you x

Welcome to the chat @MotherOfShihTzus . Sorry to hear about your frustration with the clinic, unfortunately I've no direct experience of trying to request a refund or make a cancellation so I'm not sure I can advise, but they do sound rather strict and often unfair in that regard. I hope they can see sense and you can get somewhere with it all.

Does anybody know if realistically one can have EWCM for up to 6-7 days in the run up to ovulation? Everywhere seems to suggest it should be 3 days max and if it's longer it would indicate an issue like POCS. I looked back through my cycle tracking history and it seems since I've been noting it down, I max have it for 4 days with one exception of 5 an done of 6, but I could have mis-read it at the time. I'm away from my dh till the Sunday and I tried my best to time this trip so I wouldn't miss ovulation although I know it's impossible to predict for sure two cycles ahead especially. Anyway, based on my usual patterns I'd expected to ovulate Saturday or Sunday, but I started with the EWCM yesterday so worried I'm going to over the next couple of days instead and miss the timed intercourse this month. No LH surge so far ok OPK sticks and BBT was quite low for 3 days, but today it's slightly higher so I don't expect to before Thursday/Friday. I was just hoping I could hold off till Sunday :(. Ay idea if that's possible based on EWCM?

Hi all I hope you don't mind me jumping in. I'm on immune protocol with dr Shehata, but was due to have FET locally in the next week. I've just had my pre-FET scan and they think there's either a cyst or might have ovulated, so have cancelled the cycle. Has anyone experienced this?

When they booked in my scan, I said I ovulate early yet they still gave me a late scan / because they only scan on Tuesdays and Thursdays?! Yet now I will have to pay cancellation fees for this cycle. I'm going to challenge this - has anyone had any luck in doing this? They can't even get me a follow up consultation til next month - which delays us so far. I've paid separately for immune protocol to work alongside this cycle and will have to fork out again for all this additional treatment. Im utterly devastated and cannot understand how the cost of this should fall on me. Any helps or advice much appreciated x

Thanks both, I'm going to give the Pred a miss but start the cyclogest tomorrow. I don't know whether to take it as a semi-good sign that my immune system has finally dropped or that this virus will in fact over activate it. Good shout re Hydroxy - I think I'll drop that for a few days too and see if it helps me recover. I guess I just have to let this cycle go. It will just be my luck however that this is the cycle that I finally get preggo when I can't take all the meds! But I feel so unwell I really don't have a choice as I agree, my health has to come first. Thanks for your replies xx

Oh, and for me personally it was a clear case of I’d rather lose a month of trying than my eyesight or my lung health.

Hi, @HopefulH it’s a bummer, isn’t it. I have also been feeling the effects of immune-suppression. In the last month, I have had a cold/cough, a nasty bacterial eye infection that needed 2 kinds of antibiotics from A&E last week, my first UTI and now quite bad covid. I stopped hydroxy temporarily on the basis that I would rather not risk losing my eyesight and not restarting now I’m covid positive. We’re not ttc this cycle so thankfully no pred. I am however planning a FET in January and a testing cycle (Alice/Emma/ERA) in December. Not sure what to do now - have emailed clinic to ask but I’m not sure if covid means I should delay or not. I also want to know how not to be ill all the time!!

On the one hand, I’m definitely immune-suppressed, on the other hand I’m not sure me (or my boss) can handle me being ill 24/7 for the foreseeable (I’m only really going to the office 2/week and wearing an Ffp3 mask on trains).

I’ve heard of people get pregnant when sick, even with covid but they weren’t people with overactive immune systems (I presume). I guess think about your personal factors age or amh /ability to tolerate another loss / feeling healthy/comfort of having full range of meds. I am now making choices based on ‘which approach is less likely to cause me regret or make me feel bad’.

@HopefulH I'm really sorry to hear about the continued struggles and disappointments, immune cycle over immune cycle, and now this when you seemingly have the perfect follicle sizes.
There's not much advice I can give other than probably I would skip the immune suppressants personally if I was really ill and felt like I needed my immune system to do the work. Dr Edge told me to stop the Pred immediately when I had a dental abscess for example (and that was just my first ever cycle on steroids!) so I wouldn't want to risk my health, but it's a personal decision, I get it.
Would you say this is the most promising SO cycle you've had in 12-13 in terms of follicle sizes and you never came even close? If so I can see why you'd be reluctant to skip the Pred, but on the other hand if not, if you've already done 12 cycles and they all ended in BFN, was the Pred really helping? I don't know if this is helpful at all or whether I'm just thinking out loud, easier said than done what I would do or feel when I'm not in the position.
Have you asked CRP what their stance is? I'm sure they will advise like they did for my abscess.

This might be a no brainer but I'm not sure I'm able to make sensible decisions anymore so I wanted to ask you guys.

I'm currently really poorly with Flu and a chest infection. I think the immune meds have finally knocked my system right down as I can't ever remember feeling this poorly. Unfortunately this is timed with two perfect sized follicles, which I've confirmed as having successfully ovulated - plus my lining is 9mm. I don't feel well enough to take the Pred. I should have started yesterday... what would you do? I'm also supposed to be on cyclogest but again I couldn't quite face it feeling this unwell! Typical the one cycle things look great this happens

@Lily1990 it’s my pleasure. It really is a minefield! I hope it all goes well for you at your next transfer.

@Lily1990@VenusStarr thank you both for your lovely messages ❤️ I have already reached out to my consultant to schedule an FET during my January cycle. Planning ahead helps my mental state. I’ll also request progesterone testing the day before transfer as I don’t want to take any chances. Have requested a natural modified FET this time.

@VenusStarr I completely empathise with you and I would’ve felt the exact same way. Either or feels insufficient especially when you know you’ve had issues in the past. Also the NICE guideline now states that women with recurrent miscarriages should be supplemented with 2x Cyclogest per day as standard. Clinics typically add Lubion on top for those with low progesterone, like us here. I’m glad you’re seeing your original doctor now and can hopefully put a new plan in place.

I’m feeling much better now that I have planned the next steps. Also seeing Dr S next week to see if my plan needs to be adjusted for my next transfer.

Hope everyone is doing ok xx

@VenusStarr im sorry to hear you are so anxious. I was similar under Dr S, they were very chilled about Progesterone but I was freaking out so paid for at home self tests through Medichecks which was great reassurance to see how high my levels actually were. I was taking 2 Lubion and Cyclogest coz I was so paranoid. x