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

@PGJV I have given up normal coffee over a year ago (hardest thing..), just to try to optimise my health and chances of conceiving. I occasionally have a decaf but make sure it's organic and swiss water decaf (normal decaf uses chemicals to remove the caffeine).Buying organic is important as coffee is one of the most heavily sprayed crops. I sometimes have a cup of normal tea and I like some dark chocolate so I do still have a little caffeine. xx

@PGJV this one is good grumpymule.co.uk/shop/organic-seasonal-decaf-swiss-water-processed/

Yes I still drink coffee - 2 instants a day. Sometimes a Coke too. I don’t drink alcohol and not really allowed chocolate so I really enjoy my coffee. A few months back I stopped drinking coffee for a while and got into green tea for a bit.

@Eeviee thanks for your reply, I'll have a look at the link you've sent.

@Wewin sorry for what you are going through with your mum.. I went through that phase with my mum but I have now stopped talking to her anything about our ttc journey at the moment and also we live in different countries so its not much of a bother to me but I totally understand how hard it must be for you.
also thank you for your reply regarding coffee - i've heard so many people saying to me that instant coffee isn't good for you but that's what I do drink too at the moment the days I am at work.

@Wishing5tar hope your appointment with Dr S went well. Just out of interest - which clinic are you seeing Dr S today? I thought his clinics run only on alternate Mondays at in Epsom and in London.

@PGJV it went okay thank you ☺️ Just a blood pressure test, some bloods taken & some more meds so pretty straightforward. I seen him at his Epsom clinic. I think he works more out of Epsom and only 1 or 2 days at Harley street. Which clinic do you normally see him at?

@PGJV I have given up caffeine completely. I occasionally eat a small piece of organic really dark chocolate ( has caffeine in) and I occasionally drink decaf coffee ( still has some traces of caffeine). However I have to say that I gave up coffee about a year before trying to conceive to address my sleep issues and stress. I did some homeopathy and it is completely against caffeine. I simply never picked up caffeine again after that.

Currently I work with a nutritionist and she has banned caffeine completely. It could just be me though and how my body reacts! Quite a few friends were drinking coffee while pregnant.

@Wishing5tar glad it all went well! I have seen him at Epsom and Harley Street both but I do prefer Harley Street as Epsom is a long way for us. Although some of the tests and medications they offer are only done at Epsom as far as I know so its good to know that the Epsom clinic operates multiple days a week rather than just Mondays as I'd thought.

@MrsMargot sorry I missed your message. Thanks for your reply. It's interesting your nutritionist has banned caffeine completely, although I do know high amounts of caffeine in pregnancy can be harmful. I used to drink one cup of coffee/tea everyday while I was pregnant with my son. Would you mind sharing why your nutritionist has banned caffeine? Or if she's given any specific reason? It might be useful to us to know. Thanks!

@PGJV I know there are studies linking caffeine and early miscarriage although I believe the studies were on 200mg day and over. It's also inflammatory and anti-inflammatory diet can help reduce NK cells, and caffeine can prevent nutrients being absorbed as its a diuretic. Saying that, plenty of people consume caffeine and have no issues, and many don't consume any yet still continue to miscarry.

@MrsMargot do you mind me asking the name of the nutritionist you are seeing?

@PGJV I think it has to no mostly with my personal cortisol levels and my body’s response to it! She did not give me specifics but I am pretty sure it has to do with my cortisol which used to be extremely high!

@Eeviee I have worked with 2 in the last 18 months. The foundations were laid with my first one (her name is Annie Breen and she is fantastic) but when we found out that there may be a strong immunology element I switched to Jo Gamble who is pretty much a specialist on this sort of thing. I am happy with her. I have looked at trying another one who is specialising in pregnancy and pregnancy loss. I may do in the future.

Thank you @PGJV it helps knowing that I’m not alone although I’m sorry you have your own mother difficulties too. Hugs to you ((()))

Ladies i've just had a consultation with a new specialist and he prescribed DrS protocol, except he wants me to use clexane during pg. He said although I don't seem to have a clotting issue, studies show that NK cells can cause clotting issues in pg. He recommends it also because DVT runs in my family and i've had 4mcs.

I have all of my medications on hand except clexane and would not be able to get this until i'm about five weeks if I get pg this cycle. He said I should ttc start pred, aspirin, etc at ovulation and start the clexane when i'm five/six weeks but i'm just so paranoid! Has anyone started clexane at five/six weeks and been ok?

@Wewin Gosh! I missed your message. I just saw it and it made smile! We do make a great pair indeed! We would be those annoying customers with the million requests at a restaurant! 😂😂😂 I have to say that I am much much healthier now but I used to be the queen of coffee AND I was a smoker. I have to triple try now. I am much much healthier physically these days. Emotionally I was much much healthier then. Not a worry in the world 😃.

Hi everyone! After three miscarriages in nine months I’m on my first lot of steroids and cyclones with Dr Shehata (25mg a day). Got a BFN today (10dpo) and spotting so presume my period is coming. I’m just concerned because I normally have a 14-15 day luteal phase, 10 days is unheard of and I don’t think you can sustain a pregnancy with that? Did the pred cause an early period for anyone else? I don’t know whether to take the steroids for one more day just in case it’s implantation. What do you think? Thank you

Hi @Worried82 I have a 10 day luteal phase and had my son on shehata’s plan. He tells you to stop the pred at 10 days because if you take it longer than that it can mess up your cycles. Keep testing every day and if you get a BFP then start the meds again. A couple of days break won’t affect the pregnancy if you’ve been taking the pred from ovulation. I know a couple of mr s’s patients who have stopped the pred and restarted and no issues. I’d recommend you follow his advice - he knows what he’s doing!

On caffeine, I have 2 coffees and a tea every day, sometimes more, and don’t think it had any role in my mcs or ability to conceive. I limited it to I think one tea/coffee a day when pregnant but have never cut it out. I think everyone reacts differently to caffeine though.

Hi @HarrietM87 thank you so much for your reply. That’s really put my mind at rest! Fingers crossed it is implantation but if not, there’s always next month 🤞

@MrsMargot that's funny, I know Annie well😊 She's a friend and we know each other through the nutrition world, I also worked with her for a few month last year. In fact I am seeing her on Saturday at a training event! Jo is very experienced and a wealth of knowledge too, and immune is her speciality so you're in good hands. x

@zoe16 I was on clexane / heparin from my 6 week scan last time. I think I've mentioned before I have high anti-cardiolipins which causes sticky blood (otherwise known as APS / Hughes Syndrome). The reason they didn't start me earlier is because they wanted to check the pregnancy was in the right place (ie not ectopic) before me taking the heparin. I think it's pretty standard not to start earlier. Sadly I had a mmc, but that that point I hadn't looked into NK cells and wasn't on steroids so maybe the sticky blood wasn't the only issue. x

@Worried82 I believe the pred can change your cycle. Also stopping progesterone may cause spotting. I started the steroids last month and also got a BFN, my period came early so my cycle was only 26 days (normally 28). Maybe test again tomorrow and if positive start the pred again?

@HarrietM87 just wanted to say your story of conceiving your little boy is really inspiring to all of us! Although I am really sorry for your miscarriage too. I hope you are doing well at the moment. I am on my cycle 2 of pred too at the moment on Dr S's plan and 5 dpo - just hoping for the best..

I'd also like to say that I am so thankful for this thread where I can ask questions and say what i am feeling without worrying too much! It really does help! thank you all very much and hugs to you all :)

@Worried82 and @Eeviee I got a BFN too last month on pred and progesterone.. stopped at 10 days and kept testing until AF Arrived which is usually day 27 or 28 but last month was day 29... So I do feel too that it might alter your cycle a little bit.

@PGJV Good luck! I’ve got everything crossed for you! I’m so thankful too. I spend most of my life googling and looking for answers at the minute so it’s lovely to be able to chat to people who know what you’re going through.

Thanks @Eeviee. That’s good to know. The Frer I used did that awful thing where a white line comes up where the positive line should be. For a moment I thought I was in, then it disappeared to nothing. Rats. I’ll try once more tomorrow just to be certain.

Just one more question... we’ve completely cut out alcohol as husband’s sperm DNA wasn’t great and I thought it might not sit well with steroids. But if it’s a BFN tomorrow I might treat myself to a glass of wine (or two!). Does anyone know if it’s okay to drink just a couple of days after stopping the meds?

Thanks @Eeviee i'm now seeing that most clinics wait to confirm location of pg before starting the heparin and I feel much better. I'm sorry to hear it did not work for you, but like you said, perhaps next time with the pred will be successful.

I'm also extremely grateful for this thread. It's great to hear from others who are going through the same thing share their experiences (good and bad), because while doctors can give us medical advice based on what they have seen with patients, studies etc, nothing beats personal experience in my book!! Thanks beautiful ladies xx

@Worried82 I haven't started pred as yet so don't know for sure but I believe others have said its fine to have a drink or two with pred