Immune/NK Issues - aka Pred Thread no 24!

[KittyKatSmile]

An introduction to this thread. It has been running for many years and has proved a saviour for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in 

Tagging people from the previous thread but please tag anyone else I've missed.

@Chickjen @FrannyAnny82 @ginandtonicformeplease @HoldingOn2Hope @LockThatFridge @Luckyducky2 @MairMum18 @MrsMargot @weddinghelp1 @williteverhappen @Wishing5tar @zoe16
@Eeviee
@Ultra26

@FrannyAnny82 that’s good he’s getting the op on the varicelle as that can really improve dna frag I think? Hopefully that help? My OH was 27% which is just outwith donor range but I spoke to Prof Lewis at the lab that does the testing and she didn’t seem to think that was bad. We’ve been about 4.5 months on the protocol although I think we’ve possibly missed the window a couple of times too because my cycle
keeps changing. Hopefully the next few months have good things in store. Xx

@eeviee good on you - I'm another one who throws the kitchen sink at it but it doesn't leave me with any £ to do anything else with! Definitely need to do more for my mental health though. Contacted a local therapist yday who looks to deal with fertility/miscarriage stuff so hopefully hear back from her soon.

Course I don't mind about the DNA result, ask away! Ours was initially 36% but it went up to 41% which freaked me out as DH had made lots of effort. A couple of months later it was classed as excellent so it definitely can be improved. Sounds so weird but think it's the proudest I've ever been of him because socialising is such a big part of his life and he HATED being 'good' all the time. Xx

This is my second SO cycle and I tested today at 10dpo - bfn and feeling quite gutted as had 2 good follicles and built all my hopes up! I had a really faint line with my son at 10dpo so even though I know technically it’s early I’m pretty sure I’m out. @MairMum18 what CD did you test and did you stop the pred at 10dpo? The cyclogest also delays my period so don’t really know when it’s due.

@HarrietM87 I tested at 14dpo. Had stopped the pred at 10dpo, so started taking again as soon as I got the BFP. X

Thanks @MairMum18 and congratulations! I’m so worried about stopping the pred as I had a mc earlier this year when I got pregnant by accident so only took the pred from bfp (which was a couple of days after my period was due). I did take it this morning (10dpo, 11th day of pred) but guess will stop tomorrow if/when I get another bfn.

Sorry you got a negative @harrietM87. If it helps, I had wondered about getting a positive that early, so I asked the nurses. They said pred can delay AF so to stop after 10 days, but said if I was getting symptoms to retest after 48 hours (and obv resume the pred if it was positive...). They said after 10 days the pred would have built up in your system so to not worry about missing a day or two after a ten-day run. I also found that my luteal phase was a perfect 14 days on the plan, which made it easier to figure out when to test...

Also, hello to the group no one wants to be in... I've been quietly following (and keeping my fingers crossed for everyone).

My story: I had emergency surgery to remove a large ovarian tumour last summer. They got the tumour but I lost the ovary and fallopian tube in the process. I was pregnant at the time. The baby initially survived, but I started bleeding on the day I returned to work and a scan confirmed the heartbeat had stopped.

I'm now under Dr S, and six weeks pregnant, so I've hopped over to the rainbows thread because I found pregnancy chat a little challenging after loss and while trying to conceive.

Hello @Scout20,

I’m really sorry for what you’ve been through...that sounds so unbelievably tough.

Delighted to hear that you are now pregnant under Dr S. Hope that you are doing ok...it’s so hard being pregnant after loss. Do you mind me asking how many cycles it took under Dr S? X

@MrsMargot I am down to 5 mg now too. I had really bad withdrawal symptoms so I stayed on 10 mg a bit longer and i'm doing ok now. I'm now in my second trimester (never thought i'd say those words!) and starting to feel more relaxed although i'm so nervous for the 20wks scan in a few weeks. When is your next scan?

@zoe16 I know EXACTLY what you mean. My next scan is next week. I will be 15w4 days. I am very nervous too. Also, I am so used to scans every 2 weeks ( I am a nervous wreck but I get to see the baby which is reassuring) and I cannot believe that from the last scan (16 weeks) the scans are so far and few between. Are you planning on having more private scans?

@HarrietM87 sorry to hear about your BFN, I got the same today too - plus a pregnancy announcement at work today which was a double whammy 😢 I’d only be 11dpo today and when I looked back to the photos of my last positive pregnancy test sticks I only started to get a very faint positive from 13/14dpo so it always feels too early to test. I stopped the Pred today too and will continue to test every day like a crazy woman until AF arrives 🙈 xx

@MrsMargot I got used to them too! My doc said I could have a 16wks scan if I wanted to since it would 4wks after my last and I had decided against it, but I think I’m going to have one last private one to ease my mind as I don’t think I can hold out for the 20wks. Once babies start moving we should be more relaxed and not depend on these scans!

Is it guaranteed that the natural killer cells are not a threat to baby after 12weeks? I’m now on 5mg pred and had some skin hives last night (haven’t had any this entire pregnancy until now). I’m worried my immune is starting to flare up. Should I go back on a higher dose of pred?

@zoe16 I'm currently on 5mg too and slightly worried about what will happen once I've completely come off the pred. Though I've not had any withdrawal symptoms, like yourself. What's your weaning process, mine is to drop a tablet every 4 days. Have you got a contact that you can speak to about whether you should stay on the pred? My treatment plan is through the NHS and not private direct with DrS and I do have a midwife that I can contact for anything. X

@MairMum18 At first I was dropping every 3days but the withdrawal was so bad I switched to every 5days. My whole body was itching last night and I didn’t like it as that’s how my body reacts when my immune system flares up (I also had it in my mcs but I wasn’t on pred). I’m 15 wks now and I want to go back to 10mg but for how long? I’m guess I’ll contact my doc and see what he says.

@zoe16 @MairMum18 I don't think there are ever going to be any guarantees but I think after 12 weeks the baby is too strong for the NK cells to do anything. There are also risks of taking steroids when pregnant so I guess 12 weeks is considered the time when the risks start to outweigh the benefits. The withdrawal can be brutal, I agree, but I was happy to not have that crap in my poor body anymore...

Good luck to both of you xx

Hi everyone, just wondering if anyone has any experiences of seeing a homeopath after miscarriages? We've been looking online but don't know where to start! We live in Berkshire if anyone has anyone they could recommend? Thank you!

@FrannyAnny82 I did, I saw a man in London who was highly recommended and whilst I enjoyed the session with him and found it very therapeutic to speak through everything I ultimately didn't proceed with the treatment. There's just not enough scientific evidence for me to trust it. Just my personal opinion and don't mean to put you off. I know some people really vouch for it. Good luck and if you want the details of this person happy to pass them on to you.

Thanks @Ultra26 that's kind of how I feel with regards to the evidence. And everything we try to do to improve our chances costs so much more money! I just wish there was a one-stop shop for all this stuff... medications, nutrition, supplements etc. It's all so confusing and I constantly feel like I'm making the wrong decisions. I want to try DHEA but it sounds quite risky.

@FrannyAnny82 sounds like you've come up with a great business idea when we're on the other side of this we could set something up. You're right about the money thing though - it's a bottomless pit and this homeopath charged me £125 which is nothing in the grand scheme of things but it all adds up. I've pretty much tried anything but been too scared to try DHEA too. Very sorry to hear about your recent chemical - I've only ever had chemicals x 4 and they are heartbreaking. Look after yourself x

Hi @FrannyAnny82 - I see someone holistic in London (not exactly a homeopath) who combines osteopathy, Chinese medicine etc. I've found it really insightful...he's the only person to ever point out to me that I've been breathing through my mouth all these years and therefore my blood isn't oxygenated enough. My body was also twisted in several different ways (I had no idea) which he said wouldn't be good in terms of me trying to carry a baby to term. My circulation has undoubtedly improved from seeing him and my periods are heavier as a result. He said I had a lot of heat in my body from TCM point of view and I had to cut out a lot of foods...he also said my system was overloaded from taking too many vitamins. I'd been really suffering with my skin on my face & neck last year and it's totally cleared up since seeing him and making the changes he recommended. I agree though it's really difficult as the cost of all these things mounts up and I won't give up my acupuncture sessions. Plus paying for Dr S etc etc! Xx

Thanks for the reply @Scout20 and congratulations on your pregnancy!

How are you doing @Wishing5tar? I’m 12dpo today and couldn’t face seeing another bfn so didn’t test again this morning. All the cramping I was having has stopped so I wonder if it was side effects from the progesterone. 3 of my NCT group from my son are pregnant now and lots of chat about it this morning and I just feel so depressed. Want AF to come so I can move on to the next one now.

P.S. @Ultra26 @FrannyAnny82 I tried DHEA last year for about 6 weeks & it just wasn’t for me. I am fair but I definitely gained some facial hair plus my skin went completely crazy...it was like being 16 again! Plus I felt uneasy about taking it the whole time. X

@pickledsausage here you go

@Crystal2020 That all sounds fascinating. I feel like there are so many possible reasons for the problem and I'm so desperate to find the answers. The DHEA sounds scary. It's about the only thing from It Starts With The Egg that I've not tried 🤣. @Ultra26 Yes! Once we've got our babies lets claw back some cash with our one stop shop. We'd make an absolute killing! X