Immune/NK issues - aka Pred Thread no. 23!

[Chickjen]

A quick introduction to this thread.. it has been running for many years and is a group of women who have experienced recurrent miscarriage and are now exploring immune issues as a cause. We have members at all stages, from waiting for first appointments, mid treatment, to take home babies. Please join us if you are experiencing this too, loads of friendly advice here and somewhere to share your hopes and fears.
@KittyKatSmile @DaniMERL @Megan234 @Wishing5tar @ginandtonicformeplease @Pop1234 @Belarita @Naticle @EmsIMO @MrsMargot @kdd1980 @MairMum18 @Wewin @zoe16 @fnej01 @Hopeful07 @Cream123 @Anatrina @summertimehere @Lau2019 @PoppyJ1 @WeeGi @RedPandaFluff @Chilliandlime @Thumbellini @AcornHill @Maranello4 @Sunshineblonde1 @Nixwix @HappyApple05 @Widdendream77 @Zest11 @mezgaski

Help! I have done a stupid thing. I’ve come away from home for the night and forgotten my carefully prepared pill box. I’m on day two of the pred for this cycle, tomorrow is day three. Does anyone know if missing a day will ruin the system/my dreams/ the universe for ever or if missing a day of pred/cylogest isn’t the end of the world. I could take it when I get back around 8.30 pm tomorrow but that could be dodgy with metabolism and sleep etc. What would you guys do? I am such a bum head. Xx

I know how you all feel - it's just shit. Yesterday at work I was listening to two colleagues talk about when they'll have their second and be off on mat leave, and another talk about when she'll decide to have her first. I felt like shouting there's no guarantee, you can try and try for fucking years but still end up with nothing.

As for families, it looks like neither my parents nor DH's parents will get a GC. DB and SIL don't want kids, and BIL would have to stop spending his days smoking pot to decide to parent. I know that DM is devastated FOR us, and DF probably is too but we have never talked about it. MIL on the other hand has been asking for GC since we got married. We have a policy of telling her nothing - she has no idea of the IVF or the miscarriages as a result, and instead blames me for the lack of GC as I'm such a 'career woman' (aka heartless unmaternal bitch). Last time she said that I almost yelled that my career has enabled us to pay for the IVF but turned to the gin instead 

Sorry for getting so long - I'm just really feeling it at the moment. Wedding anniversary this week and talking about updating wills, but then realising that we have no one to leave anything to has rather depressed me.

@EmsIMO We have had IVF due to MFI - never been pregnant naturally. Two MMC now, and the clinic thinks its immune issues. I'm at the same clinic as @KittyKatSmile so I have hope!

I took my second dose of humira (weird injecting something that costs over £500 a pop!) and then need a follow up NK cells test next week to see if it's worked. I've no idea what will be the next step if it hasn't.

Has anyone had a drastic change in their cycle after a miscarriage? I was (before the first miscarriage) around 31-32 days: after the first MMC it shortened to 30 days, so not a big deal. I had my second MMC at the end of April, and since then it's been at least a 40 day cycle - today it's 41 days and still waiting. Makes it impossible to calculate, which I really need to be able to do so I can clear my work diary for the possible FET.

Good god that's an essay. Really sorry

@ginandtonicformeplease we posted at pretty much the same time and your post has rather put my minor panic into perspective. I’m so sorry you’re not getting that support from family. I’m lucky that mine are supportive but still some of them find it really hard to understand. My in laws know about everything that happened but still my mother in law recently thought it appropriate to ask me pointedly “do you want children?” I wanted to say “no the heartbreak, expense and drugs are all for fun”. While people can be, to be frank, arseholes, would it be possible to tell your MIL what has been happening? Or would that just cause further stress?
Wishing you some peace and so much luck x

@EmsIMO hello! I can't seem to get pregnant (properly) either. How was your appt with Mr S? I have booked my first appt with him for the end of Oct. No idea if he will be able to help me as I feel I don't fit in anywhere. I have had 2 natural cps in 3 years, 3 failed IUIs and 1 failed IVF. What tests has Dr S put you in for?

Is anyone able to explain what the term 'delayed fertility' means? I've got the forms from Dr S and it talks about what your problems are. Does delayed fertility mean you're of an advanced maternal age or does it mean you struggle to actually get pregnant?

Thanks

@Belarita is there a 24 hour pharmacist where you are? I've never tried to get extra pred but I have epilepsy and have managed to get extra meds from a pharmacist when I've forgotten mine overnight - would your dr send them a prescription later to cover it (so the pharmacist gives you an advance so to speak)?

The reason we don't tell MIL anything is because she tells everyone everything in great detail - if we told her any of our struggles she'd post it on Facebook . I'm not actually joking about that! I'm quite a private person and I'd rather she just tell everyone that I don't care enough about her to give her a GC than everyone know my business.

Thank you @MrsMargot you have more faith in me than me 😂@Wishing5tar only 8 weeks scan but my dates/scans are a bit out of line so actually measuring 9 weeks. It is the furthest I've been ever! 😱 (and actually being ok anyway)

@ginandtonicformeplease my cycles actually got shorter and shorter so that's not much help I know. I wonder are you taking cyclogest and that could be delaying things? The NHS miscarriage people prescribed it for me (in the days before MrS) but they were really adamant it was only for from BFP or it would delay AF.

@Belarita the pred must stay in your system a reasonable amount of time, longer than 24hours I'm sure, I wonder if you missed tomorrow but took a sneaky 5/10mg when you get home tomorrow, enough to top up till the morning but not enough to ruin your sleep?

@Belarita i think @Chickjen has given some fantastic advice re. How much to take tomorrow. We get so blinkered and think all or nothing but 5 or 10mg sounds they way forward in your scenario

@ginandtonicformeplease my MIL is the same! When we announced our first pregnancy to our immediate family we gave specific instructions not to tell anyone because of the whole three months rule (unfortunately that rule ended up being true for us) and of course she could not keep her mouth shut! After that my DH and I agreed to keep ALL bfp to ourselves until the second trimester. Honestly it’s been so much easier for us but we’ve had to deal with the baby questions. I’m dreading the upcoming holidays because that’s when she makes her ‘let’s have a baby this year’ toasts. Last Christmas as I was miscarrying unbeknownst to her she said ‘hope we’ll have a 2019 baby’. But I swear this year I’m going to snap if she says something.
I see you’ve had 2mmc, did you need medical intervention? I’m currently going through my second mmc and I’m still waiting for it to happen naturally but I’m wondering if I should just cave and get the medication so I can move on.

@Chickjen excellent, so happy all is well. I believe the pred speeds up baby’s growth so perhaps that’s why you’re measuring ahead but as long as baby is healthy! You give me so much hope! Thank you!

Hi everyone, hope it's okay to join. I've been trying to decide whether to see Dr Shehata for recurrent miscarriage and I have a couple of questions I'm hoping you can help me with to make my decision:

Other clinics such as the Lister Clinic also offer NK Cells testing and seem a bit cheaper. What would you say are the reasons to go with Dr Shehata over these other clinics? What does he do differently that makes the extra cost worthwhile?

I'm concerned about all the conflicting info online about the NK Cells testing and treatment. It's very confusing and making me feel a bit apprehensive. Since most of you have first hand experience I was wondering what your thoughts are on this?

Thanks so much!

Hello! Re-joining the thread after having some time away from all things IVF. We're on our third cycle and, like others on this thread, feel like a jangling cocktail of drugs. Am taking oestrogen tablets, progesterone/ Lubion injections, oestrogen patches, Prednisolone tablets and omeprazole tablets. So far so good, no obvious side effects. Wondered if anyone here had also used the oestrogen patches? Am on my second and the stickiness isn't great

Thought I'd post this as I remember I got a lot of help from this group when trying to conceive:

I had 3 early miscarriages.

My doctor said thyroid should be under 3.5 with 1-2 optimal.

My highest ever TSH was 4 so went on 75mg levothyroxine.

Tested TSH every 3 months.

I also got tested for APS and was borderline.

Ideal IgM anticardiolipin antibodies should be 1-10 MPL U/ml

So took low daily aspirin and heparin during pregnancy along with low dose steroids.

Now have a very beautiful 15 month old.

Good luck x x x

@Maranello4 I used oestrogen patches on my last FET - I found them a bit too sticky really, could be quite difficult to get off. Perhaps it depends on brand? How often do you have to change them? Mine were ever other day.

Hi Ladies!

@Chickjen So pleased re your scan & lovely to chat in the waiting room X

@Wishing5tar Hope you're feeling better today - I find with all of this I have normal days then completely down days. Sometimes I find I need the down days to pick myself up again X

@ginandtonicformeplease Sounds like we are in similar situations, nice to be at a clinc with @KittyKatSmile :) @Zest11 We saw Mr S at the beginning of this year and I had pretty much all of his tests (very expensive and a lot of blood taken!) and two things flagged up for me that could be why we're not getting pregnant. My husband also had the comet test which has flagged up some DNA fragmentation, again potentially another reason. Mr S put me on Pred & Cyclogest (Progesterone) He also gave me another drug called Letrozole which he refers to it being a 'Super Ovulation' cycle. We chose to do a few rounds with just Pred & Progesterone and I've done two cycles now with Letrozole and am currently mid one now. Good luck X

@WeeGi For me personally, we've seen so many specialists and had IVF that was successful but I miscarried - and all along I've always been convinced that something was wrong with me that was preventing another pregnancy, but no one would listen to me. I spoke about my MC on Instagram and 2 ppl contacted me about Mr S, I also read Dr Alan Beers book, Is you baby body friendly and just joined the dots. Yes a lot of clinics don't believe in NK cells (my IVF clinic for one) but it's a personal choice I think to go down this path. For me, we are absolutely seeing the right person now & having the right treatment, it's just unfort not working yet! Good luck X

@WeeGi my own reasons for choosing Dr shehata began during my 3rd miscarriage at Haywards Heath hospital in late 2015. I had an early scan at which point no heartbeat was visible and I had to talk through options to manage the miscarriage. I was of course very upset and one lovely care assistant kept saying 'see Dr Shehata, he's a miracle worker' she was so insistent regarding his abilities. (i had never heard of him) . I believe he operates on the NHS 1 day every few weeks from haywards heath (or did at the time) and had a 2 Yr waiting list.
I ignored the advice and carried on trying and had a further miscarriage in 2016 (then age 41)

I finally booked an appointment to see him in February 2017. I had one further miscarriage under his plan but in September 2018 gave birth to my daughter.
I so so wish I knew the name of the care assistant to thank her! I saw him both at harley Street and Epsom. Basically wherever he could see me first.
He's a difficult character and I found it hard to put faith in him but I was successful and wouldn't hesitate to recommend him to others. He's expensive but he gets results.

@zoe16 I really feel for you, that is a difficult decision and a personal one. My first MMC I was adamant I wasn't having help and wanted it to be natural, I think it was around 2 weeks before it passed (which at the time I thought was horrendous) But the second time, I waited 2 weeks, bled for 2 weeks, but the baby didn't pass and the bleeding had stopped so I decided to take the medication. With the medication I bled a LOT it was literally pouring out but it did work and was actually less painful than naturally. But after that I didn't conceive again for 6 months and I was convinced it was due to the medication. But I must say that probably isn't actually true because around that time my thyroid got worse and that does stop me conceiving too. The 3rd time I really didn't want to try the medication again and too scared of D+C so I waited again, I think it took around 6 weeks. It is such a horrible time living in that limbo when you just want to be able to move on, I am sorry it is happening to you

@WeeGi for me MrS came recommended by someone I know who has had 2 successful pregnancies on his protocol. Remember these plans can involve a lot of visits so for me being able to get there easily was also a factor 🍀

@EmsIMO it was lovely to meet you! I hope you got home in time. Did MrS give any advice about your husband, or the usual story? xx

@Chickjen In true Mr S style, when he took a look at my husbands results he said, 'Oh that's very bad' .... I burst out laughing because it was the worst thing to say! This aside he was really helpful - said do the urine sample and see Mr Gordon straight away, don't bother with the urologist as my husband has had the other main test already x

@Chickjen Luckily, it seems I won’t have to make a choice as I started bleeding this morning. Last scan showed just a small sac so hopefully it will pass like my last two mmcs. Mine aren’t terribly painful probably because it’s just a small sac (they all grow to 4wks then stop). With my first mmc I had no idea what was going on, I really believe I was in shock and so I just did everything the doctor said (medication then d&c). However my body was completely different, my hormones were all over the place, af and ovulation were different and painful and we could not get pregnant! We had to do a procedure to get pregnant but since losing that pregnancy my hormones have been balanced and we’re now falling pregnant quite easily. I hope my next bfp will be successful because my dh and I are at the brink of losing all hope.
Before ttc I will try to get my thyroid and vitamins level under control, then start pred, aspirin and cyclogest protocol. I’m trying to persuade my doctor to prescribe heparin as I strongly believe I need it although my tests did not reveal a clotting problem. Are you on heparin or Clexane?

Thanks @ginandtonicformeplease, @Chickjen and @Naticle for the advice. I’m going to take a half dose or so when I get home. Should be fine. I do tend to be a bit perfectionist about it all. X

@zoe16 so sorry about your MMC. Thinking of you x

Hi, I'm currently on 5DPO on my first cycle on the meds (this 2WW is going to kill me).

I have just noticed when inserting my progesterone pesserie (sorry if TMI) that I'm very swollen inside, I'm trying to push the pesserie as high as I can, so that it doesn't fly out when i sneeze or cough, but my cervix seems to be very enlarged, but very soft and firmly closed. Is this normal?

Also has anyone gone to take a pregnancy at 10DPO and get a BFN, but end up being pregnant anyway? I've never had a BFP that early which is concerning me.

@EmsIMO oh god, I can imagine him saying that too! But I'm glad he helped, I had a feeling he would be more lenient. 😀

@zoe16 please don't give up hope. I know it's tiring and stressful and you feel like nothing is working, but you have to keep on because next time could so easily be the one. I had a very early chemical the first month on the pred and was convinced it wasn't going to be enough, but it has certainly made a difference this time, whatever the outcome. If your losses are early maybe taking from O next time will make a difference for you too. I have everything crossed for you 🍀
I'm not taking either heparin or clexane and I have to admit I was pretty lax with aspirin too. I only really took it after O and then a few days after bfp I had some spotting so stopped it again. I'm not sure if this is of interest to you (or makes a difference) but MrS suggests pregnacare, vitamin d, omega 3, pred with breakfast, and cyclogest, aspirin in the evening.

@MairMum18 I noticed something similar, like the pessary was harder to get in because something was in the way, I also had spotting so I switched to the err 'other option' 😳
I think if you get a negative on day 10 you stop the pred and wait for AF/test a few days later and if you then get a positive you start the pred again, it will have built up in your system enough to cover a few days. 🍀

Hi ladies, thanks very much for your replies.
@EmsIMO I know exactly how you feel with people not listening. I feel theres just got to be something causing my miscarriages, especially since I managed to get one tested and it was chromosomally normal. Ive had all the NHS tests and all clear, so they just keep saying to try again, that theres no reason it wont happen. Well I dont feel I can go through this emotional hell for much longer. I need answers that they can't give me. I've got Dr Beers book, not started it yet but hopefully it'll help me decide. Thanks.

@Naticle thanks for sharing your story, and congratulations on baba. Dr Shehata does seem to get results. The evidence on these pred threads is compelling (I've been quietly following). I've been doing so much research into it all I feel like I'm just so muddled though as there is so much stuff that comes up arguing against it too. Your success and the success of others on this thread is reassuring however.

@Chickjen thanks for your reply. Yes, the amount of visits is a concern given that I'm based in Scotland. Theres just nothing like that up here though. Theres the NHS clinics which only do the basic tests, and theres one private fertility clinic in the whole of Scotland, and they stopped doing the NK Cells testing and treatment when the HFEA red lighted it.

I discussed the situation again with my husband last night and we made the decision to see Dr S, and I felt tons better having settled on a course of action. But then today I had conversations with a couple of NHS consultants who were basically saying to beware of NK Cell testing, it's not evidence based, treatments could potentially have unknown health consequences for me or a baby. All of which I was aware of but the discussion has made me massively anxious about it all again. It's not as if they were offering me another solution though. I was wondering if anyone else here had concerns, and how you came to your conclusion? Am really feeling so helpless and mixed up, and just want to do the right thing.

@weeGi I'm sorry you feel so traumatised and undecided. I was in a similar position when I was first told about him in 2015 hence not proceeding until 2017. i remember so clearly coming out of his offices and phoning my sister regarding what to do because of the expense/mental trauma.
If you don't you'll forever regret it she said or words to that effect.

I've just started following someone on Instagram who seems to be in a similar situation to you 'livingaftermiscarriages' she is now 8bweeks pregnant and travels to and from Scotland to see Dr. S.

It may be worth following her and asking questions to somoene who faces the same logistical issues x