Immune/NK issues - aka Pred Thread no. 22!

@Wishing5tar hi. I have a 10 month old daughter.

I am not sure what the hydroxy does - I thought it was an anit malerial but can't see that on wiki now! It's obviously just one more thing for our immune system to deal with which stops it attacking our precious embryos.

Peeved is a good description of his response to me visiting the local erpc instead of his team. I live round the corner from the Epsom clinic so thats probably why he would have preferred to have seen me directly.

I wish I'd had this email chain to consult with 2 years ago (July 2017 was my last niscarriage)

Don't lose hope. By sticking with his plan you're giving yourself the best possible chance of success.

I'm keeping everything crossed for you xx

@Wishing5tar not at all! It took 5 months the first time on just the pred - the 6 wk scan was on 2 Jan and as mentioned, nothing there and I had a normal period 2 days later.

It’s definitely good to see Mr S ASAP because he will almost certainly put you on Hydroxy and you have to take it for 6 - 8 weeks before trying again which drove me insane at the time!
It basically meant skipping out Feb and trying again in early March. I fell first time in March but had the Chemical - positives from 9-12dpo but then they disappeared, a day after intralipids! I was very down then and ready to give up.
I had a weird 4 day bleed and we had a relaxed approach to BDing at the end of March.
Low and behold I took a test and was already about 13dpo judging by the darkness of the line. So a bit of a shock and luckily I had taken the pred but would have started it late as my ovulation was not when I thought (cycle days were mixed up).
So I held off by about a week for the intralipids as couldn’t face the same thing again - wasted money.

I would have a lot of hope If I were you, despite how you will be feeling now xx

@Naticle thank you for sending love! It was the clinic’s midwives who’d advised me to visit my local EPAC so hopefully Mr S doesn’t take an issue with it 🤞🏽 We live in the north east so travel to the clinic in Epsom takes at least 6 hours in the car each way so no real easy option to just pop and see him.
Thank you for sharing your experience - what does the hydroxy do? Oh I’m so pleased it worked for you! Are you pregnant now or have you already had a baby? ❤️

@KittyKatSmile thanks lovely & I'm so pleased to hear that the clinic is giving you the treatment & service you deserve!! 😘

@Chickjen thanks for sharing! It really does help to know I’m not alone 😞 I do need to focus on the success stories of this thread as I’m definitely not ready to give up yet!

@Anatrina thanks hun & I’ll keep you all updated. I actually ended up emailing the clinic yesterday to give them an update when I got my blood results. My HCG levels were only 88 which I know is low & come lunchtime yesterday I had more of period like bleeding so I know it’s definitely over. The clinic wants me to keep taking my medication until I have my bloods repeated and will likely swap my scan appointment to just a follow up consultation with Mr S.

I should have been getting repeat bloods done this afternoon at 48 hours but we’d already planned a night away to a spa hotel to celebrate our 5 year wedding anniversary so it would have interrupted the couples massage we have booked 😂 thankfully the nurse at the EPAC knows me well and we agreed, given the expected circumstances, to just repeat on Monday morning.

@fnej01 @Belarita thanks ladies 😘 honestly the support on here is amazing!

@DaniMERL thank you, I totally forgot that you’d experienced the same 😔 The Hydroxy seems to be the thing that Mr S adds in when you’ve miscarried on the plan, did you find it took you longer to fall too?

Love to you all & thank you for taking the time to message ✨ xxx

@Wishing5tar so sorry!

Don’t forget this is what happened to me and I felt the same - like it was just never going to happen for me despite everyone else appearing to have success. We added the Hydroxy, had the heartbreaking early chemical pregnancy and then this success happened.
And just to say, I didn’t have any spotting with mine but my symptoms disappeared and I had a 6 week scan via my NHS fertility clinic (I think l was supposed to have the CRP one a day or so later). The scan showed nothing there at all. I cancelled the CRP scan and saw Mr S for a consultation and he was absolutely fine - not peeved at all.

This WILL happen for you.
Lots of love to you xx

@Wishing5tar I'm so sorry this has happened. I really feel for you right now. We all know too well the rollercoaster of hope and sadness this involves. Please don't feel stupid or blame yourself in that way. There's no amount of rationalisation, intellectualisation or managing expectations that can contend with the fact that this is something we all want in an incredibly deep, even primal way. There's no shame in it. Of course you were hopeful and of course you're heartbroken. Really just thinking of you and hoping you are getting everything you need right now. xxx

@Wishing5tar really sorry to hear this, thinking of you

@wishing5tar So sorry to hear your news. Its so disappointing, no matter how hard you try to not to get your hopes up. But there’s so many of Mr S’s success stories where it’s not worked first time and all it needs is a little tweak. It will happen. Thinking of you. Let us know what Mr S says xx

@ginandtonicformeplease yes they gave me the intralipids last Friday and I'll have a final one 4 weeks after that, just to have done everything possible. I made a formal complaint and the clinic has been brilliant in handling it. The clinical director called me and was mortified that this happened and talked me through what she was going to do to ensure it wouldn't happen again. She also told me my Alpha TNF (is that right??) level was borderline, just to put my mind at rest. They have also said they'll do an extra reassurance scan at 9 weeks for free. I was feeling pretty good about waiting until 10 weeks when I do the Harmony test + scan but being reassured for free is no bad thing I guess....

I know what you mean about ignoring things; quite often the easiest thing to do. And totally you should take the money. Who knows when you and DH might really need it and he'll be pleased it's squirrelled away x

@Wishing5tar I'm so sorry to hear that. 

@KittyKatSmile Did you get sorted with your plan for intralipids?

I've started intralipids again, and need another blood test next week to see if they work or if I'm one of the tiny number of people they don't work for, in which case my consultant will put me on humaira (sp?). I'm trying not to think about any of it too much, and I think DH is doing the same. This time last year I was pregnant for the first time, couldn't believe my luck that IVF had worked on the first go, and it never occurred to me that it would go wrong. How times change! The second time it worked I was on tenterhooks worrying something would go wrong, and now we just don't talk about it at all - as though to contemplate it being a success is tempting fate in some way.

DM has offered us some money to help pay towards it all, and DH is doing a very manly thing of not wanting to take it - would I be wrong to just take it anyway and put it into an account he never looks at?

Oh @Wishing5star I am so sorry. I had a tiny experience of this with my chemical. After spending 1k on treatment to reduce the chance of chemicals, to have another one that actually failed even earlier, really knocked my hopes. I know this isn't the same because I didn't have the weeks of living in hope like you, but I can imagine how I would feel and I'm sad you have to go through it 😥 The thought I am clinging to is plenty of women have been here and failed the first attempt who have then gone on to success, please don't give up hope, and do definitely talk to the clinic in case they can tweak your plan. In the meantime we are all here for you xx

@Wishing5tar I'm so sorry to hear this. Nothing I can say to make any of it any better or close to bearable but know that we are all here for you whenever you need us and that we understand probably better than anyone. Take care of yourself lovely x

@Wishing5tar I am thinking of you. I know the whole watching clear blue scenario all too well.
I had this on the DR S plan and just to warn you, he seemed rather annoyed I'd gone to erpc rather than to him directly. (I said I was too upset). Maybe he wasn't annoyed but in my emotional state I always felt like the naughty one trying to avoid extra costs.
If my 5 miscarriages, 4 were this exact scenario, a blighted ovum/missed miscarriage.
My treatment was amended to include hydroxy. I'm sorry I can't spell it. It then took me much longer than previously to get pregnant. Over 6 months. But it then worked.
I know none of this is going to help in the distress you face today but I hope it will give you hope and confidence to continue on the plan.
Sending you all my love,

@Belarita good news you’re not experiencing any side effects on the Pred & fantastic news regarding your partners test results ☺️

When I posted yesterday morning laid in bed I felt great, another day closer to my scan appointment & the sun was shining but oh how short lived that was. I’m still testing each day (because who doesn’t love wasting loads of money on plastic sticks 😂) and the clear blue digital had said 2-3 weeks the night before but the one yesterday morning using my first wee of the day only said 1-2 weeks when I was expecting to be moving towards 3+ weeks 😞 Called my local EPAC & explained that I’d been spotting/ had dark brown sticky discharge for 12 days now and they got me an appointment yesterday afternoon. The scan showed my lining was thick (for me anyway, apparently it varies massively with each person) but that there was no gestational sac 💔 They said if I was confident with my dates (which I am, this plan doesn’t really allow for much guess work) then she was sorry but they’d expect to have seen something. They took my bloods to test my HCG levels and I’ll get the results today & repeat tomorrow. Once I have those I’ll be emailing the clinic to let them know I don’t need my scan appointment and to ask what happens now...
It doesn’t surprise me that we didn’t see anything on the scan as I’ve never seen anything before but I just feel stupid for thinking this time could be different 😔 I know Mr S’s plan isn’t an exact science and we didn’t hand our money over with an absolute guarantee that he’d deliver us a baby but it’s a hard pill to swallow when you’ve been holding onto the hope that this was the answer, only to find out that maybe it isn’t after all 😢 xxxx

Thank you @Belarita and @Pop1234 it really does help to hear from people who have already been through it, the fear of the unknown is often the worst bit as with most of our whole situations. We had a chat, and I told him of your experiences, he is happy to take the impryl, ok to go for the urine test and scan (but does want to lose some weight first - he is really super sensitive about his weight) but surgery is an absolute no, which is fine by me and a better outcome than I expected 😀

@Belarita 0% wow! That really is an amazing result! 😎

@Pop1234 I've found it ok so far, no real side effects which I am slightly disappointed by, I was secretly hoping for more energy and a better appetite! But I do feel I'm not really doing this properly, I'm only tracking O by temping and with the last chemical I didn't go for intras because I felt something wasn't right. I think at some point I am going to have to admit to myself this isn't going to happen until I fully commit to the plan. 😕

You 2 are both day 5?! I would already be counting down the days till I could test! Fingers crossed for both of you! 🍀

Hey @Chickjen! Yes it can be a shock when those results first come through and you're both looking at those graphs wondering "just how bad is this for us?"

My DH had 23% high damage and 37% low damage. He was terribly upset initially and really blamed himself for not taking care of his health more. It was kind of heartbreaking. He had consultations with the two recommended consultants which was actually very helpful for getting a more balanced picture of the situation. The scan detected a couple of small varicocele on one side (small varicose veins in the testes which can cause a build up of heat and lead to oxidative damage) but the consultant advised him to see how he did just on the Condensyl and lifestyle changes before considering an operation. I think the consultants were also very useful in outlining what is actually known and what is not about how any interventions affect live births.

Also - upside alert for your DH - the male fertility specialist told him regular ejaculation every 24-48 hrs is one of the best things you can do for sperm quality. Who doesn't like a prescription like that?

There's also an informative and lighthearted website called don'tcookyourballs.com that has useful lifestyle info.

I think it's really tricky for men because they are just not used to having such invasive and personal investigations. We women have to deal with it from such an early age what with periods, smears etc that I think the idea of someone having a good poke around our bits is kind of parr for the course. When he started expressing his fears about having someone look at his balls I was a bit like "are you **ing kidding me? Do you know the amount of apparatus I've had up my Mary in my time?!" I'm sure you'll choose your words more sensitively. But he went with the appointments and they were absolutely fine.

Let me know how you get on. It is upsetting to start with but once you're taking proactive measures it will feel better. I know it looks terrible on paper but bear in mind that my DH's High damage score was 0% on second testing - wiped out. There's lots of hope here.

xx

@Chickjen sorry you had a chemical on the plan. It's rubbish.

I was also like you, really praying his test would come back normal because I felt nervous about him having to have the scan and extra appointments etc but he had the scan and was fine about it. Don't get me wrong he was dreading it but we just made a joke out of it to lighten the situation. Have you seen Dr S for his results or did they just get sent to you?

I'm also on the complex plan for high activation NK cells. Currently on day 5 of the pred and finding it ok so far. How have you found it?

Hi @Pop1234 yes high levels and overly aggressive NK cells, plus high TNF Alpha cells too (which are now normal after humira injections) We didn't do the sperm test initially but I had another chemical on the plan so DH finally agreed. He is a bit of a wimp when it comes to this sort of thing which makes me nervous about needing extra appts...😱 Thanks for sharing, I'm sorry you seem to be in the same rickety old boat 😢
How are you getting on? Are you on pred/intra plan too?

@Chickjen my DH had 11% high and 34% low damage and has been on the Condensyl (which is now impryl). We saw two consultants who did the urine sample, scan etc. They said a lot of the time lifestyle changes, Condensyl and reducing heat stress (like hot baths/hot tubs) helps to improve the quality.

Sorry I may have missed it but did Dr S diagnose you with high NKC too?

Hi Belarita, your timing is perfect! 😎 We got DH's test results today and they look bad, (although nothing to compare them to for context) 40% damage, but the low damage ones which should be over 76% is only 15% 😱 They have recommended impryl and maybe seeing a urologist. Did your OH see anyone or just the condensyl?
I'm glad the pred isn't giving you any side effects 😀

@Belarita I have sent you a pm about sperm dna damage, I hope you don't mind

Hi @Wishing5tar and nice to meet you! How are YOU doing? Huge congrats on your BFP, and I hope these anxious early days are going ok for you. Sending you love and luck.

Thanks so much for the Ovulation test advice @EmsIMO and @KittyKatSmile, you both made me chuckle. I never got any proper OV indication with the particular boots tests I bought but a quick check on other TTC boards confirmed that's not unusual. I probably need to look for either a more sensitive test or maybe try the Ovusense, it sounds pretty reliable. Weird personal question @EmsIMO but does it have any effect on your CM at all? At over 40 I'm just slightly concerned about disturbing the, er, balance of things up there.

I'm now on day 5 of the pred regime and must say, despite my worries, that I feel absolutely fine. We also had some good news yesterday: my fella re-did the comet test after 4+ months of Consensyl and no booze and the results are extraordinary. He's gone from a high degree of DNA damage to being within donor range. It's been a real boost for us. I don't know if DNA fragmentation has come up for any of you TTC with a male partner. I notice the male side of things isn't talked about so much but if its a concern I hope you might find it heartening to know that this kind of turnaround is possible.

@Hopeful07 I'm so sorry you're having such a tough time with this at the moment. I hope you and Mr S can find the balance that's right for your body. Rooting for you over here!

@Chickjen how are you doing? I can see its been a tough one for you too recently and I do hope you're starting to feel a bit better looking to the future.

I can feel myself slowly going into the weird dance of trying to balance my expectations as I approach taking my first test on this protocol next week. You guys know....

Anyhow, love and courage to all
xx

Hi,
All fine here. Am 18 weeks now and feeling fairly well looked after with extra NHS consultant checks which is very reassuring. Struggling a little in the heat but so is everyone I think!
Love to you all x

Hey ladies, just checking in. How is everyone? Xx

@Hopeful07 it’s difficult to tell why you didn’t conceive this time, but Mr S knows what he is doing. You need to try again and hope for the best.
Maybe email the clinic and tell them that you’ve been unsuccessful and see if Mr S wants to change anything. Keep going I know it’s hard but you can’t give up, sending lots of love Xx

@Megan234 - i failed with pred so Mr.S added hydroxy as well and asked to add g-csf if i m ok with it (jus bcos of the no.of miscarraiges). Earlier he used to prescribe only 10 mg pred with g-csf. But recently he changed the protocol to add the normal 25 mg pred.. So I took everything in this cycle, but now thinking may be i m over suprressed by the steroids and it didnt allow me to conceive in the first place..(i dont hav any immune issues except for elevated thyroid antibodies)