Immune/NK cells pred thread #31

These*!

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

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!

@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

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

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

That is interesting! Both doctors have now said it’s likely the vaccine, how odd! I’ve repeated the test though and waiting for the results next week as the NHS doctor said it could be a lab error, let’s see! He did say I’m a peculiar case because I have no symptoms and chest is fine thankfully. If your blood test is ok then Dr S would likely offer it to you. Thank you for your wishes xx

@Newbeginnings22023 many thanks. That's interesting as I had the bcg when I was a young teen but the blood test to check for TB was okay I believe. I'll find out more next week hopefully. I hope Dr S has another plan for you. All the best x

Hi @Privatemedical246 thank you, relieved doesn’t begin to cut it!

The reason is very unique to me because I’ve had the BCG vaccine which is causing my TB blood test to be positive. One of the side effects of humira is that it can reactivate TB, and although I don’t have TB I worry that the vaccine, which is causing a positive test, may mean that I’ll react badly to the injections. To be fair Dr S wanted me to get checked out for this reason, before taking the injections because he obviously had concerns too. I’ll need to go back to him and see what he says now that I’ve been seen. If you don’t have any risk factors then I’d say be well informed on the possible side effects, ask those who have been on it for their experiences, and make up your own mind about it xx

@Newbeginnings22023 glad your chest is clear, may I ask why the doctor advised against it. Because of the risks? I am weighing up if its short term use it should be okay!

Just a little update from me, chest exam all clear but the doctor is advising against humira as a precaution, so I’ll have to contact Dr S and see if he’s got an alternative plan. To be honest I’m put off humira already because of all this!

Hi @VenusStarr sorry your DH was poorly after the op, hope he’s feeling better now. I know what you mean about natural cycles and the timings not working out, it’s hard when the timings aren’t within your control. Hopefully next month will be ok.

I haven’t had the first injection yet because I need to rule out TB first - I tested positive for TB when doing his blood tests but that’s almost certainly because I had the BCG vaccine when I was little, as I lived abroad as a child. But as a precaution I need to get a chest exam to make sure things are ok then I’m good to take the injection. An annoying added hurdle! I’m seeing the doctor next Friday (23rd) then I can proceed afterwards.

So all being well it’s the first injection, then a second injection 2 weeks later, then seeing Dr S after the blood results to ensure the levels have gone down. He suggested IVF with ICSI due to DH’s poor fragmentation, but said I can do superovulation first if I prefer. So he’s put me on the complex programme which includes predisolone, cyclogest and intralipids. Haven’t digested the full plan yet as I’ve got a few steps to digest beforehand 🤦🏻‍♀️

Really sorry about the rat problem :( glad it’s been sorted albeit being emotional xx

@VenusStarr sorry to hear about your husband and also the fact you've got to wait for your next superovulaton attempt. I'm frustrated just waiting for my apppintment which is next weds. I recieved some results via email and from what I understand I have postive ANA, raised NK cells and then also raised TH1/TH2 cykotones but obviously not an expert just based on the ranges provided and scrolling through these convos. Thanks for letting me know younwere able to start straight away. I'm finding it frustrating that we've missed 2 cycles but I know it's best to wait and know what I'm dealing with to be treated. Wishing you all the best Xx

@Danni8 wow indeed, what are the odds? Lol. I also went to CRGH after several miscarriages.
Completely agree with you that big decisions like these should a) come from the patient but also b) should be delivered in a very sensitive manner. Patients in our position are in such a delicate, vulnerable state so those comments are really unhelpful.

To suggest surrogacy to you is surprising after your initial attempts but also because you mentioned poor fragmentation on your husband’s side. I’m in the same boat and the advice was always PIMSI or the like if we decide to do IVF again.

I’m so sick of doctors saying things like this and then end up being wrong. For example a friend of mine was told she would only find success using donor eggs, then she conceived naturally a few months later! Dr Seshadri suggests something absurd such as using condoms, but on what basis? IVF isn’t the only solution and it doesn’t work for every single patient/couple so I didn’t like the pushiness.

Sorry for the silly question because you’ve already tried lots of things, but are you undergoing immune treatment now for your next attempt? I have a friend who’s with Lister but because she’s single she did a donor embryo cycle and so far it’s successful.

Really sorry for your experience with her too! The things we have to go through! Xx

Omg @Newbeginnings22023 that's my consultant!!! Hahaha. Gosh I'm sorry you had that experience.
I absolutely love her and think she is so kind and sweet but I actually think the only downside is that she gets very emotionally involved. Which is so sweet on one hand because I feel like she will do a lot to help her patients BUT she can be quick to suggest alternative options. I had a similar experience.
So I came to crgh after so many miscarriages to do pgta testing because of my hubby's dna fragmentation and the miscarriages. First cycle was poor. Got loads of eggs but after day 3, the embryos reduced a lot in number amd we only got 1 pgs normal embryo (our 2nd cycle went so much better as she tweaked a few things) which we transferred in September 2020 WITH NO IMMUNE MEDS cos of covid amd ended in a chemical. So at our WTF appointment, she was like, if the next transfer doesn't go well, you need to consider surrogacy. Which was NOT okay at the time because it was way too soon and there were so many things we hadn't tried yet. It was a little traumatic tbh.

I feel like for big decisions like moving on to the next stage of Fertility treatment needs to come from the patient. I only looked into surrogacy at the start of 2022 when I felt like I had been doing a lot and was still miscarrying and even though we might do it now, I still haven't given up on my body. I'm just switching my focus for now.
Anyway that's lots of rambling but you're not alone there. Also glad to hear that she didn't just jump the gun with me! Defo feedback and just say how that made u feel. I probably should've done the same tbh. And maybe still will. Xx

Hi @Danni8 thanks for your message. I was with Dr Seshadri at the CRGH who I really liked initially and she had agreed to do timed intercourse/superovulation for us first before doing IVF. She completely changed her tone after my last natural chemical, I really felt horrible afterwards. Never has a fertility doctor ever advised me to stop trying or use protection, and in an aggressive way too! You’re right though, I should pass on that feedback. I’m still really hurt by her reaction although it’s been a few months now.

My update with Dr S is that my NK cells were fine but the TNF Alpha was high so he’s putting me on humira injections initially, see how it goes.

Good luck with your next steps, looks like you have a solid plan ahead xx

Hi everyone.its been a weird couple weeks and my plans with fertility steps may have changed so not sure if I'm coming or going right now. Will explain bit first will try to respond to a few of the messages above. Sorry if I miss anything. I'm skimming quickly.

@VenusStarr I hope you're okay after all those pregnancy announcements and feeling all the negative feelings. Glad your tubes are clear and hopefully it's had a therapeutic effect on your body.
Why does Dr S not promote PGTA???

@Lily1990 jessy (wildridefertility) is a friend of mine. We met on baby centre years ago because of this journey amd became friends. Dr Gorgy is one of the more thorough RIs in the UK. He was trained by Alan Beer. I like him. I saw Dr S on the NHS so far less rigorous testing but even his private clinic doesn't do what Dr Gorgy's does so it may be worth exploring. Obviously doesn't work for everyone. I have a similar profile. Low LADs, low unk cells and high peripheral nk cells and high cytokines. Check out the RI group on fb if you can. Really helpful.

@HopefulH sorry to hear about your kidneys. Is this totally new or has it ever been off before? I had ohss at the end of 2020 after my last egg collection amd for the whole of 2021, my kidney function was off. Could it be ivf related? I basically started drinking 2 or more litres water daily and I think its helped. My kidney func is normal now.

@Newbeginnings22023 sorry to hear about your experience. I'm at crgh too..can't believe your consultant said that. So unhelpful!!! Who was it!? I would provide feedback and say u weren't happy with that comment so she doesn't do it to anyone else.

Right. My update. Basically I've been involved in the UK surrogacy community since last year, making connections etc..anyone a surrogate I became friends with (but who lives too far away) recommended me to her friend who is another experienced surrogate looking to do another journey. So I've just been chatting to her and building a friendship but she seems keen.... So my initial plan was to do another fet on the next cycle with the tweaks Dr Gorgy suggested a d adding in oestrogen. I even did LIT again as my LADS had dropped. But now I think I'm going to move over to lister to do an egg collection instead of FET to make more embryos because if we actually go down the surrogacy route, we'd use one of our existing embryos but we only have 2 tested and 1 thay didn't give a result so id rather have some more. It's literally all up in the air right now. No idea where this is going to go! I've started the process with lister so going amh testing tomo there and hubby did his semen analysis there today. Consultation next week with current clinic and another with new clinic. Whewww. Xx

Does anybody what Dr S advised to do next if the complex plan and GCSF doesn't work?

I am trying to explore my options now that the hysterscopy was clear and I don't want to return to the same plan as I know it doesn't work for me. I definitely know I cannot afford IVIG so will not be going forward with that but is there any other medication he adds that anyone is aware of?

I am considering getting another opinion but I literally feel so lost and have never felt like this my whole journey. I feel as though a part of me has lost hope of ever becoming a mum. I have had all tests and treatments apart from karotyping which I will be looking into but i think its a lost cause as well.

What would you all recommend?

@comingsoon786110I'm so sorry. Your experience sounds a bit like mine, my first loss would also be turning 1 this September and since then (discovered at 12 wk scan) I've only got to 5 weeks (3 more times). I have only just started on Dr S's plan though and yet to have steroids and intralipid treatment. I follow someone on instagram called wildridefertility who went to Dr Gorgy for further tests after having a loss on Dr S's plan (with PGT embryo) and it turned out she had other issues like low NK uterine cells (though high peripheral NK cells) and low LADs. Obviously that is just one person and it's hugely expensive to have more tests, but in her case it worked out as she had a baby.
Sending love to everyone x

@comingsoon786110 that sounds like a good idea. I recently got a second opinion with a much better doctor and it just really helped get another perspective.

thanks for sharing your travelling stories, you are so right. I’ve only ever got as far as 7.5 weeks and I also had an ectopic once which I found out about 5 days before my honeymoon! Thank god I hadn’t got on a plane because I ended up in hospital throwing up.

my friend said to me the other day not to worry about travelling because she didn’t feel that bad in her first trimester but that’s someone who has got pregnant easily and carried 2 pregnancies with no problems. I think when you have experienced complications and have immune protocols too it adds an extra layer of anxiety and feeling rough.

I think I just needed to speak to some like minded women about this because I don’t think my other friends understand just how gruelling this first stage can be when you are going through infertility. Appreciate your response 😊

@Ems123456789 i know the feeling!! My first loss would have been turning 1 this September. I am considering going to a different specialist and maybe getting more extensive testing. It never hurts. I did have them run all my TEG blood tests again yesterday as I have been off aspirin for a few months now. Let's see what happens with that.

I travelled in the first trimester with my first pregnancy, I was 11ish weeks. I would not recommend it at all. I had not a spot or morning sickness here but abroad was a different story. I was throwing up, nauseous, diarrhoea (tmi sorry). When i came back, I miscarried 3 days later at 14 weeks. Endless people told me it was due to flying and was too risky but obviously they didn't know about the NK cells. It makes me wonder how did i get so far with this condition in my first pregnancy but I cant even get past 5 weeks in my subsequent ones?

I had just started HCQ just before i went off to Thailand last November but stopped it immediately after taking 3 days worth. I had such a bad stomach and even had a few accidents which I am not proud of! I decided i was not going to let it ruin my mood and holiday as I would have been island hopping and not always near a loo so i restarted the treatment after i got back. Moral of the story- I don't think its a good idea in my opinion. Hope you can figure out what to do though xx

Glad to hear @comingsoon786110 that you have had clear results but yea I can appreciate it’s also frustrating.
Would you ever consider getting a second opinion from a different fertility consultant? Not sure if it will help but they might suggest something else.
It’s hard when you tally up the time, I was thinking the other day about my losses and when they would have arrived. It’s sucks. Especially when surrounded my friends sending their kids to school and I’m still trying to get pregnant! The only thing that I find helps ground me is that I do hope one day I will have a family and so I try to encourage myself to get out there and do things that I can without kids, make the most of my time etc.
Having said that my friends are talking about a girls weekend away in Europe this summer and I start my next medicated round of FET this coming weekend, and I’m worried about committing to travelling if i feel rough or just generally anxious about miscarriages. Has anyone travelled during a first trimester whilst going through treatment? It’s annoying how much it can interrupt your life.

@HopefulH sorry to hear about the kidney news. I’ve never heard of this before. It’s good your GP flagged it but yea sounds like they were a bit insensitive. Also how do they know it’s definitely those meds that caused it. Do you have a follow up with them? Or is there anyone else you can see?

@Privatemedical246 welcome and sorry to hear about your results - I have exactly the same. I am not on a Dr shehata protocol. I am doing IVF and immunes at a different clinic however I would think you wouldn’t have to worry and as you say you can contact your clinic if you did get pregnant naturally to get the immune support you might need.