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

Thanks @KittyKatSmile I'm trying!
I was actually surprised how quickly the two weeks wait went by this time - I just kept myself busy.

I know we're at the same clinic - do you find their instructions about no exercise except gentle walking for the first twelve weeks kind of crazy? I've had to stop yoga as the teachers don't like pregnant women there in the first trimester, but everything?! I'd completely forgotten this from last time, probably one of the reasons I put on so much weight (although I'm still blaming the steroids mostly!).

@ginandtonicformeplease oh yes!! I have had a massive rant elsewhere on here about that. I actually phoned up and took them to task on it because their advice directly contradicts that of the NHS. I asked what their reasoning was and they said 'you've come so far'. I pointed out that wasn't a reason. They conceded it was directed to the lowest common denominator so if you've never done any exercise then don't take up marathon running. I also pointed out that the risk to my mental health of not exercising was far greater than the risk they had merely made up. I carried on doing everything I'd been doing before: spin, weights, aerobics and I'm now 25 weeks. Just do what you feel comfortable doing is my non-expert advice x

Thank you @Wewin !! ❤️❤️ And congratulations @ginandtonicformeplease !! I am really really hoping we are all lucky 🍀 this time!!

@zoe16 how are you feeling?!

@HoldingOn2Hope thank you very much! I am crossing my fingers for you! 🍀❤️❤️❤️❤️

Congratulations @ginandtonicformeplease! I hope this is your lucky and sticky bean! I haven’t been signed off exercises but I’m scared to tbh so I’ve just been walking on my treadmill and using light weights. I think the most important thing is to do what feels right for you without pushing your body too much. How have you been getting on with clexane? I’m so nervous to start it!

@MrsMargot feeling great, not much symptoms but I know pred can mask them so I’m trying not to fret! First scan next Sat then going on holiday! I must be crazy but it was booked way in advance. Hopefully scan will be great and I can enjoy my holiday🙂. How about you?

@KittyKatSmile I haven't ranted at them but I have found it rather ridiculous. Fair enough my yoga teachers don't like teaching so early in pregnancy - that's their choice. I was thinking of going swimming instead: not something I do often but it's not exactly hard core. Just enough to keep me exercising. The gym classes I go to, I'm in two minds about - they're quite high intensity and because of work being a nightmare I've missed a few weeks so not sure if that's the same as starting again 🤷‍♀️

@zoe16 I haven't found the clexane too bad this time: but then I've had far fewer symptoms from any of the drugs compared to last time. Last time the clexane felt like it was burning as I pushed it in: I couldn't find a way to make it comfortable at all. Fingers crossed it won't be bad for you!

@zoe16 great! I do not think you are crazy at all! I am in Paris myself for the weekend. We booked the tickets 4 months ago. I am a bit nervous but I am sure it will be fine. The main issue is the food really. I do not do gluten and dairy (among other things) and I am in the land of baguettes, croissants and cheese 😬🙄. I am sampling a lot of fruit I have to say.

I am also trying not to worry about the lack of symptoms. The nurses at the clinic mentioned that I should not be worried if but I am a worrier... I do remember other ladies saying the exact same thing about pred masking the symptoms thought so we are OK. ❤️

@MrsMargot @zoe16 I also had next to no symptoms apart from tiredness after about 8 weeks. It's hard not to worry, I tried to just be grateful I wasn't spewing my guts up at all times. Happy holidays to anyone travelling at the moment: I've just got back from New Zealand. Travel is fine :-)

@MrsMargot Is your gluten/dairy free related to ttc/NKC? I’ve been trying to stay way from both but sadly I can’t get enough of homemade pizzas recently. I can’t imagine being in Paris with such restrictions, in fact, I don’t know how I’ll manage with all the scrumptious food on holiday for two weeks!

Congratulations @ginandtonicformeplease! 🍸That’s so awesome. Well done!!. 😊🙏

Congratulations @ginandtonicformeplease that great news!! @zoe16 My pregnancy symptoms are also getting less and I'm just over 9 weeks. I'm also worrying that something has happened, its so difficult not to worry. I'm just trying to keep myself busy, taking it one day at a time and remaining positive. 10 week scan on Thurs! xx

And @MrsMargot x

Thank you @williteverhappen!! ❤️ I hope everything goes well with your scan this week!!

It is very encouraging that there are no obvious symptoms. @KittyKatSmile I did remember you mentioned it before. It is good I am not the only one.

@zoe16 my nutritionist suggested the Autoimmune protocol diet back in August (after my ms) to tame down any autoimmune responses while I was recovering. I did it (and it was a pain) but I felt great. My body do not do well with gluten and dairy. I kept at it but I am now doing simple hunter gatherer.

Hi all, my 3rd month on the DrS protocol was another BFN. I'm back in research mode to see what I can do to increase my chances for next month. After looking online I've seen a lot of people saying that omega 3 is known to decrease NK cells, and that they are taking up to 3000mg a day. Now I don't know if there's a lot of truth to this, but it has made me question whether I should up my dosage of omega 3. How much is everyone else taking? Also is anyone else taking any other extra vitamins etc. that aren't part of the protocol?

@williteverhappen I’m a worrier too with lack of/reduction of symptoms as it’s one of my first indicator that something is wrong, but like others have said the pred can mask symptoms so try not to worry. Continue to stay positive and I hope everything goes well with your scan ❤️

@MrsMargot and it probably helped you to conceive!

@MairMum18 I also heard that omega 3 reduces NKC. I think that’s the reason for the use of intralipids as it’s high in omega 3. I am taking 2000mg omega 3 per day and the remainder from my omega 3 foods, in addition to prenatals, extra folate and vitamin d3. Hope next cycle is the lucky one for you ❤️

Congratulations @zoe16, @MrsMargot, @williteverhappen and @ginandtonicformeplease... really really happy for you all.. sorry if I’ve missed anyone..

Yes congrats to all the BFP's, can't believe how many in one go!? you're all giving me hope!! Good luck for the next couple of weeks.

Thank you @zoe16 I will definitely up my omega 3 this month, I'm getting very impatient, and feel like I would do anything right now to get a BFP. Praying for a Christmas miracle!!

Hi @MairMum18 do you do acupuncture? I just started after some excellent advice on here so hoping that will help.

It turns out my acupuncturist used to work with Dr S! Apparently they had several big fall outs, but outside of their differences (which he didn't divulge) he said he's the best in the business which made me feel more positive.

Yes, congrats to all the positives!! You are giving me hope too!

On another note, has anyone been to St Mary’s? I've FINALLY got my NHS appointment next month but I don't know what to expect. Will there be loads of invasive tests? I'm sick of being prodded!

Hello ladies i have a question - so I've got a dark line on OPK this morning which means its ovulation day for me today but then I can't be sure I still will be ovulating when we DTD tonight (sorry for TMI) - is my understanding correct?
@Wewin I totally see why you've stopped timing and using OPKs its stressing me out big time too!

Hello everyone! Thank you again.

I am now in the waiting game until the first scan in 2 weeks. I try to remain positive and not run to the loo to check every 5 minutes (I was spotting in my first and second pregnancy). I have already started my fragmin injections, the progesterone the pred and I wait.i am thoroughly drugged in the best possible way 😬😱.

Out of curiosity, did anyone ever met the additional doctors they have at Dr S’s clinic? One of the future Scans I have is with someone else (week 8 scan should everything goes well until then). I do not mind it. I actually thought that the scans are done by a different person not Dr S! it seems he is doing them?

@FrannyAnny82 I have an appointment for next month with St Mary’s. It would have been my first one but I am hoping everything goes well and I won’t need it...my GP sent me to the wrong clinic (after waiting for 3 months) and this one had an additional 2 month wait. They will send you quite a lot of paper work in the post. It is for both you and your partner. They require you to send it back at least 1 week before your appointment. I think it says that if you have had any private investigations etc to take them with you. This may mean that you could avoid a few tests?

@PGJV it is not a down to the minute science as to when you ovulate but you can get pregnant up to 2 days after you've ovulated so... have a good evening :-)

@KittyKatSmile thank you for your reply.. I was going to do another test in the evening once i get home but I guess I'll just leave it so that I don't put myself into that extra stress and just enjoy my evening like you said :) Thanks!

Hello all! Wonderful to see all the BFPs here. Massive hugs and crossed fingers for everyone.

Been a bumpy couple of months for me as I've been having such terrible withdrawal symptoms from the pred that Mr S decided to transfer me onto Hydroxychloroquine to control my NK cells. Unfortunately it takes two months to build up in your system and we'd already started trying this month so I had to continue with another cycle of pred for this month.

I had bleeding a week after ovulation which is my usual spotting pattern so I was feeling pretty despondent. I nearly didn't bother taking the FRER this morning. BUT... I got two lines. There was much swearing. So I guess this bleeding is implantation bleeding (which I haven't had since my very first pregnancy) and we'll see... and I'm staying on the pred for now.

I'm feeling very cautious after my chemical two cycles ago and will just have to see what happens to that second line over the next couple of days.

Blimey.

Meanwhile @MrsMargot, I saw Ms Viswanatha instead of Dr S for a checkup appointment and she was very pleasant. It was pretty routine and brief but she was knowledgable, kind and professional.

Best wishes to you all
xx

@FrannyAnny82 funnily enough I am looking into starting acupuncture after Christmas (once I have a bit more money) I have heard many stories of how it's helped people conceive, so that's the next thing on my list to try! X