Immune/ NK cells - Pred threat 27

[LaurenAB94]

@Bambii @Daffodil21 @Eeviee @Everhopeful35 @farfromperfect82 @Eeviee @Everhopeful35 @Hazlet2 @farfromperfect82 @HoldingOn2Hope @Jellystar23 @KtAgs @Lalaifa @LookingforAnswers86 @Marabouchoc @LRL12 @MrsMargot @Naticle @NessyT91 @NessyT91 @NICK7nick7 @rainwillmaketheflowersgrow @Rebecca9876 @Sophfr17 @Tinpo @VenusStarr @Wheresmyrainbow @Whyisthistakingsolong

@NImama hey, sorry to hear about the cramping. I wouldn’t stop the medication without speaking to the nurses. Do you have any bleeding? Cramping is normal in pregnancy - there’s so much happening in your body. Don’t stress. I had spotting last week and thought yup that’s it. I even mentally planned where I’m going to go the following weekend. I even cancelled my intralipids for that week but the nurses advised me to still take them just incase and I’m glad I did cos my spotting stopped.
You just never know. You’re also on a lot of medication. Just relax and see what happens X

@VenusStarr I’m okay thank you so much for asking! How you doing? X

@Tumby Hey. Sorry to hear about your losses.
I too am on a complex plan like yourself but I discovered I had PCOS too so I’m also on Metformin & Inofolic as well as Hydroxy & Intralipids. I was also worried about the whole eye thing but it’s nothing to worry about. I’ve read it’s only when you take it continuously for a whole year you need to get your eyes tested but even then not many people are impacted. I saw Dr S in March for my first appointment so I’m pretty new to all of this too! I wish you the best of luck, stay positive Xx

@VenusStarr thank you so much. I’m new to this group and this is the first group I’ve ever joined. It helps a lot to be able to talk to other women going through similar! No bleeding so far and no cramping since last night. I just feel like I’m about to get cramps now. But I suppose that feeling is common in early pregnancy. I will try to keep the faith! X

Hi @VenusStarr

That’s exciting about IVF! How are you feeling about it all?

I’m about 11DPO on my first cycle of letrozole. I had dominant follicles on the right side (where my only tube is) so I was feeling quite optimistic. Did a test yesterday though and it was BFN. Based on previous cycles AF should be here Monday or Tuesday but I’m not sure if the progesterone will delay it? I’m driving myself mad looking for symptoms and then just telling myself I’m out!

We’re planning on doing one more letrozole cycle and then having a break before starting IVF in July I think.

@VenusStarr thank you. Yes it's been intense. Just starting to feel a bit more like myself. I've seen Dr Shehata - still under him on the NHS. When he tested me initially, I had normal NK cells but I've taken pred three times now - the IVF one added intralipids and it still stopped progressing around the same time as my other ones. The Chicago immunology testing I did with my clinic showed TNF Alpha of 45 which is way over. So I'm thinking I'll need Humira!? I was going to see Dr Shehata privately but decided against it because I personally didn't like his bedside manner. Looking at Dr Gorgy's website I hope they do similar things. I see he also does this LIT therapy which is an addition. He's defo not talked about as much though. I'm hoping he's good. All the best with your upcoming IVF

@Nlmama I hope all goes well with your pregnancy. Any symptoms or lack thereof after losses really puts is on edge. I agree with @HopingForABlessing don't stop your meds, hang on in there and wait for a scan.

@Tumby
I was on very similar plan to you with Cyclogest as well, I was also bit worried about the eye thing but the clinic do blood tests (check ups) I think it was after 3 months to make sure your body is coping with the different medications and not causing any other problems.
I started taking Hydroxy last June fell pregnant in August & am now due in few weeks. I was able to stop the Hydroxy at 20weeks so was only taking it for around 6months ish,
I think all medications have some side effects unfortunately this is one for Hydroxy but it is very rare so try not to worry.
X

Thanks you @LRL12, that's very reassuring. I find that they don't really give you a lot of info when I go for appointments. It all feels so rushed! So I'm really very grateful to be part of this group! Amazing news that it has worked out for you. Congratulations!! ☺️ Xx did you have the monthly intralipids as well? X

@HopingForABlessing - thank you for your message. I also started seeing Dr S in March too so feel free to reach out along the way! Xx

Really hoping that everything works out positively for everyone, it's a tough road but good to finally have some answers & a way forward.

Did anyone else's partner go to see Dr Gordan? I think male factor can be a huge contributor as well and whilst Dr S has huge success with us ladies, I still think it's important to consider the guy in this too! My SO has 56% DNA Fragmentation so is just focusing on lifestyle changes for the time being (limited alcohol/caffeine) but tbh the limited alcohol bit kinda limits the fun of trying!!! 🙄🤦🏻‍♀️😃

@Tumby
Yes I had Intralipids every 4wks from positive test, Hydroxy & Cyclogest,
I know some people can have Intralipids from ovulation.
Also Emma who does the Intralipids is lovely and always happy to answer any questions while your with her, I would check things with her if I was unsure about anything.
X

Hi @Tumby, I'm someone who has low level auto immune issues so I really like being on hydroxychloroquine as other symptoms I have anyway have gone. I've been on it over a year and have had an eye check at the opticians after 6 months to check for any macula changes which I showed Mr Shehata.

It was the pred that I hated so came off that after 3 months and had ovulation intralipids. It worked for me as I got pregnant that month and I'm 38 weeks pregnant.

My husband had a consult with Mr Gordon. His dna fragmentation was different- they got 3 scores from a comet test - but not great. So we went both had a lifestyle change and found he had an infection we didn't know about, which we both were treated for. I was fully prepared to send him for a scrotal scan though. Good luck with it all. X

I really like Create too @Mini82 I feel comfortable with them and they've explained everything well. Our first appointment with the doctor lasted about an hour and he really took time to talk to us, so we feel in good hands. Did you move your embie from Create?

I bruise really easily, so I think my tummy will be black and blue too! I'm doing a shop today, so going to include lots of protein :)

I hope you're feeling OK today ❤️ I'm holding hope for you xx

Glad all is well @HopingForABlessing ☺️

I've got everything crossed for you @NImama 🍀

I'm sorry about the bfn @Badlydrawngirly I stopped the progesterone about 11dpo and think my af arrived on time. Saying that in previous cycles pre Dr S, I took it until 14dpo and came on as usual, so it's never delayed af for me. I hope you don't need to do ivf 🤞 are you sticking with your current doctor, or have you got an appointment with Dr S (I've lost track!)

Thank you @Danni8 I hope your appointment goes well.

Good to see you @KtAgs @LRL12 ❤️

Hi ladies enjoyed reading everyone's stories about ttc and staying pregnant under dr s I've had 10 miscarriages now I know it's a lot I catch very easy but they don't stay . I've got a 21 he old and a 9 year old I feel very lucky but at 39 I just felt I wanted one more and it's been a long 16 months of getting pregnant and loss after loss I went with nova fertility who prescribed me 20mg of predisnone and clexane injections and progesterone pessaires I got to 6 weeks which was good as usually I get a positive it fades and then I have a loss so I know when it's happening I usually know I am before I test as a week ish before I get cramping and do yeah pregnant but they never get any further it's so frustrating I just don't know where to g from here now as dr s is very expensive I don't know if I have high killer cells all my nhs tests came back normal so I'm just feeling really down about it all as to what to do next can anyone tell me what dose predisnone they are on as some people are on more than 20mg thanks for reading x

I've also been advised could be egg quality and I may possibly need to have eggs retrieved and checked for abnormalities before transfer however that's also a massive cost I just think there are lots of women on there 40s even late 40s having babies x

Hi @tinkerbell999, I'm so sorry for all your losses. I've had 5 losses in 3 years, to have 10 in such a short space of time is heartbreaking. In our last pregnancy I too was on prednisone 20mg from a positive test plus many other meds but sadly it failed so we decided to stand the cost and see Dr S as his treatment starts preconception so hoping that will make a difference. We go back next week for results. Like you I was told it could be my eggs based on guess work as I have just turned 38. My AMH was slightly lower than it should be but Dr S said it's still good, karotyping normal for my husband and I, histology normal on our last miscarriage and husbands sperm comet test normal. We already know I have autoimmune issues and raised NK cells so seeing Dr S feels the right step for us. It is so hard to know what direction to take after so many losses. Whatever you decide to do I have everything crossed for a happy ending. This journey is extremely difficult. Xxxx

@VenusStarr we've left our frozen Embie at Create, and this pregnancy is a result of a fresh transfer at Argc. We have another 4 frozen at Argc now too.
We also felt the same with Create that they really took their time in our initial appt and the fact that it was close by it wasn't as stressful.
If things don't progress then we've decided we won't try again and will maybe look into surrogacy as an option.
Xx

Hey ladies, I have heard of people taking digital pregnancy tests weekly for few weeks to check that the results changes from 1-2 weeks, 2-3 weeks etc. Do you think it is reliable or just total torture and creates more stress?

Also wondering best week for first scan? Consultant is suggesting I book in for 6 weeks but I thought it was only from 7+ that a heartbeat can be detected? Thanks in advance xx

It sounds like you both have done a lot of thinking with regards to carrying on or with surrogacy @Mini82, I hope tomorrow gives you more certainty ❤️ 5 embies on ice is good but I know while you're in this limbo it might not feel it xx

@NImama I don't personally like the weeks indicator tests. I only used them in my first pregnancy and they went up as expected but things had already started going wrong around 5 weeks. I know others on here do like them, but I don't think they'd reassure me anymore.

Dr S scans around 6 weeks. I think closer to 7 is likely to be more conclusive.

I'm sorry for your losses @tinkerbell999 I take 25mg of predisolone from ovulation but I've not conceived at all in the last 6 months. It could be you need steroids earlier. It could be down to egg or sperm quality too. It's really difficult to know what is the right route. Have you had any testing? We've had similar to @Rainbowdreams1983 including parental karyotyping and all the immunes with Dr S now, it got to the point we were testing so as to rule things out and thankfully do have an answer. Sending you love ❤️ xx

@VenusStarr thanks for your reply. I am seeing him through the NHS so wonder perhaps if there is a reason there not to include Pred as well initially? Not complaining anyway as the Pred side affects don’t sound very pleasant for those of you who have been taking it.

I know everyone’s situations vary enormously, but this group does seem incredibly supportive of our shared / different experiences, so thank you. Sending love ❤️

Those of you who are under dr S, did you have to hold off ttc for a certain period of time once you started treatment? Thank you x

@Louizah and any others worried about pred side effects - just wanted to update you all now I've been off it for a while.

It's not particularly pleasant at the time, thankfully it didn't seem to disrupt my sleep at all (except the extra peeing in the night!). I know others aren't quite so lucky though. The weight gain is very rapid. I got stretch marks on my bum and thighs very early on (so early on that they are now beginning to fade at 25 weeks! I'm sure more will come along now though!). It does make you ravenously hungry, it almost became a chore to eat! Although I never felt nauseous - not sure if that's down to the pred as I think it can mask pregnancy symptoms, or I was just lucky. The moonface comes pretty quickly too, so for a while I felt like I just looked like a whale, even though I wasn't actually that far along! I kept telling myself it will all be worth it, and so far it does seem to be. It's also worth mentioning that I was also on progesterone which didn't help the weight gain and puffiness. There was certainly no hiding my pregnancy from a very early stage.

Anyway, I'm now 25 weeks, I fully came off the pred (after weaning) at 16 weeks, and didn't come off the progesterone until 21 weeks (I was too scared to come off it sooner!) the moonface took a few weeks to go, and now the weight gain and puffiness has totally gone now. I no longer feel like a whale, I just feel like a 'normal' pregnancy woman. I braved the scales and they actually said -7 lbs compared to the 7 weeks ago. I obviously haven't tried to lose weight at all, there was clearly a lot of water weight to come off!

I just wanted to let you all know that the pred side effects aren't permanent. They will go and they'll go fairly quickly. When I googled how long it would take for pred weight to come off, I remember reading something like '6 weeks with healthy eating and exercise'. I guess it depends person to person, but for me it wasn't like that at all!

I hope everyone is doing as well as they can be x

@treesall we were allowed to ttc straight away after my results appointment. As I was near ovulation, I had intralipids the same day and took my hydroxy loading dose.

@Louizah I've only taken pred twice but both times almost immediately got moon face but didn't massively get any other side effects. I've put on a stone with the regular intralipids as well. I'm glad you found this group, it's been very helpful to me.

Good to hear from you @Daffodil21

Thinking of you today @Mini82 ❤️

@treesall
We could start trying straight away once we had results, just had to take my loading dose of Hydroxy, but will depend on what medication / plan your on. X

@VenusStarr @LRL12 thank you both very much.

@VenusStarr I agree with you completely about ruling things out, that's what we have done too. I find it helps reassure us we are now on the right path...hopefully 🤞
I'm feel a bit frustrated at my body this past month, my periods had been near perfect for 2 months after our last miscarriage and then last month I dont know what happened as this cycle is extremely long and my last period was just brown stuff. Typical just before we head for our results. I finally got a positive on clearblue ovulation today and one of the cheapie ones so at least I know where I am in my cycle which is something. Xx

Hi @VenusStarr

I’ve been googling like mad whether progesterone can delay AF as I should have started yesterday (based on last month with exactly same ovulation day). I started having cramps last night and thought that was it but it’s not progressed. I’m carrying on with the progesterone and I’ll test again on Friday (day 29). I’ve had some pinkish cm (sorry for tmi, found out when inserting the progesterone this morning!) I seem to remember having the same in jan before my BFP. I also have very prominent blue veins on boobs and hands, again had this in jan but it could be the progesterone causing these symptoms!

I am driving myself mad and just want to know but unless AF shows up sharpish I know the next few days will be a horrible limbo.

We’ve decided to do all the NK tests etc with the ivf clinic in Greece as it’s cheaper and will all be done in own go.

Fingers crossed for your IVF! Xx

Good news on the positive ovulation test @Rainbowdreams1983 I'm having similar af issues this cycle - typical when we're just about to start ivf! Been spotting since Sunday 😕 was hoping she'd be here today but not yet, although it's heavier. Feeling frustrated. I just want a proper period, I wouldn't feel comfortable calling this one and starting my meds. Hopefully tomorrow 🤞

Argh @Badlydrawngirly it's horrible being in limbo! I think as you've got similar symptoms to your bfp your plan sounds sensible. I'm with you in limbo - it's torturous!
Are you using Serum in Greece? Definitely go for the cheaper option for your nk cells tests, especially if you'll be doing your ivf there :)
Hope we're both out of our misery soon!! Af for me and bfp for you! 🙏 X

It’s awful isn’t it @VenusStarr! I’ve caved and bought lots of chocolate to console myself! Would love an alcoholic drink (that happened when I got my BFP in jan too - I was so convinced AF was starting that I had one!)

It is Serum we’re going to. They’re closed at some point in August so hoping to get out there before then, although hoping we won’t need to if you know what I mean!