Immune/NK cells - pred thread 29

[StillTrying10000]

Starting a new thread as the last was full.

@Sezmarelda1 thank you. I’ve just come back from seeing Dr Edge. She was very nice and explained things really well. We’ve seen a heartbeat and it measures just one day behind @ 6+2 so overall very positive. It is still early days but it’s probably one of the best scans we have had in a long time so feeling very happy and hoping it all continues to develop well. I’m back next week for another one. After the spotting last week I thought it was all over again!

It’s good you’ve had a darker line, definitely worth a try and fingers crossed for you.

Welcome all new posters, I’m sorry you are here but there is hope and support for all of us. Hope you all have a good weekend xx

@Arwen7 just wanted to say how happy I am with your news! 🥰 have a nice relaxing weekend!

@Tgrf55 yes that's what the clinic have told me. You will ovulate following the trigger and you'll know when, so it takes the guess work out. It's nice not having to think about it but also I like to feel I have more control. Just have to let go of that though as much as you can.

@FfayeN thank you for those reassuring words. I do know it can happen, just a little more comforting to know the tubed ovary is awake. Definitely helps to not feel so hopeless though, knowing that there is always hope whatever side.

@MrsMargot 😂😂 it seems like a good trade off. I feel really hungry this time round, like now I feel sickly hungry. Some months I seem to get away with the side effects and others not so much. But again, my trade off is this over moonface. Watch me get that next!

@Sezmarelda1 it's so sad to hear so many have had unsatisfactory care. I don't know how far anyone ever gets with the nhs complaints but it just can't happen to other people. I hate being a test case that is learnt from, but the thought of others going through it is heartbreaking. I didn't feel heard or respected at all following my surgery.

Have you been taking OPKs? It might just be delayed if your body is a little out of whack. I do totally understand your conflict with the anxiety. Wanting something so much but being terrified of it at the same time. The intimacy is hard too. I try a lot now to make it fun, because I was at a point where I didn't want to do it at any other point. So we make sure we don't just do it around fertile time.

@Arwen7 I'm so pleased to hear about your scan today - how wonderful! Did she say what might have caused the spotting? So happy for you 💕

@VenusStarr are you doing ok?

Lots of love to everyone xxx

Hi all,

Such good news @Arwen7 delighted for you xx

@Tgrf55
I had some dizziness on pred but the biggest symptom was headaches for 4-5 days every time I came off. They said I just need to keep taking breaks of it every 3 months. I've been on a diet since beg of Jan and stepping on the scales every day, I've noticed the hormones/drugs do make a big difference. I've had consistent calorie deficit and exercise and yet can be +2lbs or -2lbs overnight at different times on the plan in extreme cases. We can't beat ourselves up about it, it's so outwith our control!

I've been a bit quiet as been waiting to see what happened with my situation.. After no period at day 35, I ended up having to email 3 times before being taken in for a scan at day 44. Dr S found a large cyst and a smaller one (7cm blood filled and 4cm fluid filled) and I had to go back to do the same consultation/scan with Dr Jan yesterday on day 46 so double the cost annoyingly. They said the cyst meant I didn't have a period. I feel so frustrated with the plan now. I was told to trigger, despite me saying I felt I had ovulated the week before and now this. Clinic says that noone knows how cysts happen but I've never had one before and it's too much of a coincidence for me to believe it's not connected. I've been told I can wait 3-6 months for removal via NHS referral or pay privately for Dr Jan to remove in 2-4 weeks. He said the risk is it could rupture or I could get ovarian torsion (twisting) and lose the ovary. It's so upsetting as we've been saving up to start IVF in a few months and now the money will need to go on sorting this. I feel I have no choice but to go private as the potential consequence of losing an ovary would be a disaster. He agreed, saying I have low ovarian reserves (at 32!) and it would be better to avoid the risk of losing it. I keep crying, it just feels like one thing after another. It's very hard to stay positive at the moment.

Wishing everyone a good weekend xxx

And thanks @StillTrying10000 for the podcast link. Will give it a go.

@MrsMargot @myrainbowjourney
Thank you ladies. Since I wrote that yesterday my mood has changed completely as she also mentioned slightly low heartbeat and looking at the notes it was 99bpm and according to all the research I’ve done it’s too low! So I’m panicking now and it won’t be a nice week waiting for the next scan. She could not find a reason for the bleeding but there is a small haematoma which she said was not active.

@89Hope I’m so sorry to hear about all this! I understand how you feel sometimes it does feel like it’s one thing after the other and it can be very lonely. Be kind to yourself.
Would it be worth trying to explain the situation to your go and asking for an urgent referral? I can imagine it will be quite expensive privately but definitely worth it if it means avoiding losing an ovary! Sending you a big hug.

I have everything crossed for you @Arwen7. It's possible the heartbeat had only recently started at 6+2, and doesn't it tend to be slower to begin with? I know it will be a very anxious and long week to wait for the next scan!

Are things still going ok for you @WillowTree0721?

@myrainbowjourney yes I'm using basic OPKs and also tracking my basal body temperature, and I'm using Fertility Friend to record all the data. It's helped to speed up the time it takes to conceive in the past for sure. I also like that I know when to expect AF based on when I ovulated, and also when it's been long enough to make it worth doing an early pregnancy test. I'm a bit of a data geek to be honest

I'm so sorry about the cysts @89Hope, it really is so unfair. I agree it's hard not to make that link to the trigger shot. I second what @Arwen7 says, try to be kind to yourself. You have come through tough times and are stronger than you know

@89Hope - thanks for the tips re the pred. So you get these side effects even only taking them for 10 days and then stopping? I assumed side effects would only really kick in if you take them once pregnant for 12 weeks. Hopefully I get on ok. Sorry to hear about your cysts. I had a 4cm cyst on my left ovary for 3 years and it caused no issues but it was a simple cyst. They drained it during my EP surgery and now Dr S isn’t sure if it’s back or there is a dominant follicle there. Hoping it’s the latter as cysts are so annoying. Is it the blood filled cyst that they are worried about? I know the fluid filled ones are common but I don’t know much about the blood cysts. I was actually worrying about this yesterday with the super ov programme, I would assume it would encourage cysts to form. Hope you are ok it’s totally fine to feel frustrated but try to remain positive as much as you can. I know it’s so hard.

@Arwen7 fingers crossed for you!! Keep us updated

Hope everyone is doing ok today xxx

@Arwen7 fingers crossed everything is fine. What did the doc say? If there were no huge concerns I would take it as it is not a huge concern.

Ladies, question for you, do you take the pred/progesterone and then test on day 11 or you take it until your next period is due? I am asking because I have 12 days literally phase and last time I had a positive at day 12 (I cheated last time and took the drugs for 12 days).
thank you!

@89Hope I'm so sorry to read your update. It's so disheartening when something else is thrown into the mix. Definitely agree with being kind to yourself. It's not easy sometimes but it's also better to know and sort it rather than not know about it and possible further issues. It will all help towards a good outcome so try and stay positive if you can. Sending all the love xxx

@Arwen7 sorry you aren't feeling as positive. I think Dr Edge would have said more if she was overly concerned, so in the absence of that, just remember all the good things from your scan. You could always book a private scan elsewhere in the meantime if it's too difficult to wait, but hopefully time will pick up and it'll be here in no time.

@Sezmarelda1 pre super ovulation I used the same app and it really helped. I had such long cycles and it was really good to feel I had some sort of handle on what was going on. I also invested in an Ava bracelet as I wasn't good with waking up and temping. That helped a lot too. It's hard to not try and track through this but there's literally zero point. Nice to let go a bit but also, want to be in charge!

@MrsMargot I usually test day 11 as they ask, but a few times I've had a faint like (likely trigger shot hanging around they reckon) so I've kept on going on the meds until I know for sure. I know most get a positive at day 11 but I do think it's early, so I'd rather wait a few more days xxx

Hi all I hope everyone is doing ok. Just caught up and thought I'd message you all. Welcome to the new ladies on here - I'm so sorry to hear what you've all been through.

@whatsgoingon22 I was diagnosed with high TNF by Dr Shehata in December/ January. I had 2 injections of humira 2 weeks apart in January and it worked really well and bought down my levels. I had zero side effects. Didn't feel any different whatsoever. The injections are tricky to do so I got a nurse friend to help me. There's clear instructions in the pack to follow, I read them very carefully first and followed every stage exactly as didn't want to get it wrong. Feel free to message me if you want. I got mine from the hospital in Wimbledon that dr Shehata recommends you go to. They cost around £400 for two injections.

@StillTrying10000 Thankyou so much for posting that link to the podcast. I have listened to it and it's so helpful and really explains things clearly.

@Tgrf55 I totally get what you mean about feeling a little rushed at appointments at times. I'm so overwhelmed by all the information normally that I don't feel like I get time to process it properly and can't think of all the questions I need to ask! I'm currently on prednisolone. I've been on it since my positive pregnancy test and I've got no side effects again and definitely no moon face so far. Everyone reacts differently to medication and if you read the potential side effects it all looks a bit scarey but I've been absolutely fine. The only medication I have reacted to so far is metformin which is for my PCOS. I couldn't tolerate 3 tablets a day but he dropped me down to 2 tablets daily and I was fine. Try not to worry.

@myrainbowjourney and @Tgrf55 I'm so so sorry to read what happened to you both with your care and the ectopic pregnancies. It's just shocking and I'm so sorry you've both been through that.

@Arwen7 Thats great news your scan was ok and Dr Edge was thorough. I know from my own anxiety right now how hard it is not to panic about things but try to stay calm
and hopefully after next weeks scan you'll be able to relax a bit more. I know how hard that is though!

@89Hope I'm so sorry to hear what's happened with your cyst. It must be so frustrating for you and I hope you can get it sorted quickly. I had a cyst come up
on my ovary whilst recovering from a missed miscarriage at 11 weeks. It really did feel like one thing after the the other at the time. I really hope you're ok.

@Sezmarelda1 I use fertility friend too it's really good and I've found its tracked my cycle really well. Fingers crossed for you this month. Thankyou also for asking how I am. I've really found this week difficult. I've been full of anxiety. Ive had bloods done regularly at hospital but last set just caused me more worry and I kind of wish I didn't know the numbers now as I keep over analysing them. I know I just have to wait to my scan next week now as bloods aren't really that useful anymore. I'm just preying all will be ok xxx

Sorry @Tgrf55 I meant to say I've been on prednisolone since ovulation aswell as progesterone and omeprazole. Xx

@WillowTree0721 thank you - I think I need to stop reading the side effects of the pred and just have an open mind as like you say it affects people differently. That’s amazing you have no side effects, the dream! Congrats on your pregnancy how far along are you now?
I also take metformin. I haven’t got PCOS but I do have PCO. I was the same as you i started with 3 a day and it made me soooo sick. I reduced it to 1 a day (been on them years now) and they made my cycles like clockwork. (Post MC and EP cycles are all over the place but to be expected I guess)

Ladies have any of you had a hyfosy at CRP? I had one on Weds and I have been spotting a lot since but everything I’ve read says that you shouldn’t be. I’m not in pain and it’s just brown spotting, not red. Assume it’s fine but wondering if any of you had the same experience. I found it very painful I was so relieved when it was over xxx

Hi everyone

I have managed to read through some messages and wanted to wish everyone well in their journeys.

@VenusStarr thank you for introducing me to this thread.

I had a conversation with Mr S a couple of weeks ago who has recommended I start GCSF injections as hydroxycloroquine caused hair loss side effect. Did anyone else experience any hair loss with this medication?
He has also recommended I start Co-enzyme Q10. Anyone have any recommendations?

Also does anyone have any advice/experience on taking GCSF as I am very scared and nervous in case of any side effects, complications or defects with the baby if I get pregnant😩

I am already on his plan for prednisolone, Cyclogest and aspirin. I am also on day 5 of taking Letrozole and will be seeing Ms Edge next week for scan and for timing of trigger shot.

@Sophi81 on CoQ10, I take the purer form of Ubiquionole (as opposed to Ubiquinone). It is supposed to get absorbed much better. However It is on the more expensive side. I have been taking the Pharma Nord.

I have no experience on your other question but I am sure the ladies here will be able to help!

@myrainbowjourney you are right. I shall do the same. I am day 9 now and very hard to not symptom spot but I clearly remember I had zero symptoms last time so trying to stay calm and collected 🤓

@MrsMargot thank you. I didn't know there were 2 different types. I forgot to mention they have to be suitable for vegetarians. I will have a browse and see what I can find. How long have you been taking this?

@Sophi81 4 years now. Back when I had my first mc (and then the subsequent ones) I went science mad because I was not getting much from the doctors. It was the usual ‘ you are old, your eggs are old, try again, one will stick’ business. I looked into the egg quality which is pretty controversial subject. Some doctors believe it can change and some doctors not. I read a lot about it (including the It starts with an egg’ ) and I started talking to nutritionists to address any other aspect that I may be missing. I did a host of different tests and I have been in a tailor made programme since then.

I cannot tell you whether the quality is better because it looks like the quality was not the issue in the first place and because I do not have hard numbers from before and after but I have friends that did IVF before and after (coQ10 along with other vitamins) and the quality of the eggs (and embryos) was much much better.

I can certainly tell you that I have had the best skin, hair (always a problem throughput my life), digestion I have ever had in my life and I completely eliminated PMS. I need to say again that I am not only taking coQ10. I have a host of vitamins that I take (and pose/start again depending on what I need at the time). Co Q10 along with the rest that DrS is suggesting are standard and pretty difficult to ‘overdose’ if you know what I mean. In my case, we noticed that I have a slight blood sugar imbalance so I am taking a couple of things to balance that. I was taking it throughout pregnancy ( under supervision of course). Similarly, I have naturally VERY high iron. I cannot for any reason take any iron supplements.

Apologies, long winded answer but I though to set the scene so it makes sense why I have been taking it for so long. If it makes any difference, several nutritionists and doctors agree that it takes 6 months for egg quality to improve significantly (3 month pre release environment and 3 months in place waiting to be hatched environment) and just 30 days for the sperm.

Final thing, I am not sure about vegetarian options (there are many of course) but if I can pass one advice is to get brands that have pure ingredient list. I was shocked with the amount of rubbish they put in the bit wrapper or inside to make it better tasting.
If I can help any other way I am happy to! ❤️❤️❤️

@MrsMargot oh wow! If it takes 3-6 months for egg quality to improve is there any point in me taking it if I'm getting the trigger shot next week? 🤷🏽‍♀️
I didn't get pregnant last month as I feel like they might have got my ovulation day wrong so I'm hoping it happens this month. I will be seeing them on day 10 of my cycle so they will have to predict which day I need to trigger the following week. It's so frustrating at times😩

@Sophi81 never too late to start however I was not taking them while pregnant and I wholeheartedly hope this is your month so you can delay until after! 🙌🏻 🤓

I ovulated over the weekend, a fair bit later in my cycle than is usual for me, but I'm officially in my tww now! I was really lucky to fall pregnant in the first cycle of trying following MC #2 and #3 so I think I'll be disappointed if it doesn't happen that quickly this time around, but I know I've done all I can this cycle and it's out of my hands now...I'm going to try my hardest to be kind to myself and minimise stress, and just hope for the best!

Hi everyone. I've missed so many messages! I hope everyone is doing ok.

It's the 3 year anniversary of my first loss today. Just struggling go comprehend that we're here 💔 feel out of sorts today.

We had our ivf frozen embryo transfer planning appointment today. I've got a scan tomorrow morning and if all is OK we'll be on track for going with my May cycle. I'm really scared about doing it all again. I can feel my anxiety levels rising already.

I'll try and catch up on everyone's messages. Lots of love xx ❤️

Sending a big hug @VenusStarr, anniversaries can be so hard. Never give up hope xx

@WillowTree0721 thank you 🥰. It's hard because I don't want anger or resentment, but trying to hide it and bury it is impossible. Just good to have an outlet, I just hope I can deal with their response if they say there's no issues identified.

How are you getting on? It's hard sometimes when the knowledge doesn't help. But I'm sure these numbers are never a perfect pattern. Are you feeling a little better now?

@Tgrf55 how's the spotting? I did have one and didn't have any spotting, but then I didn't find it particularly painful either, so perhaps they just caught your cervix or something.

@Sophi81 welcome 🥰

I can't help with your questions as I don't have those injections. I am on the same other meds and super ov though. Happy to help in any other way, or just to chat.

@MrsMargot how are you today? I find it so hard to symptom spot, which is mad because when I have had symptoms, I've not been pregnant, and I have been and had none.

@Sezmarelda1 welcome to the TWW! Hard work is done now! Fingers crossed for the same success this time round.

@VenusStarr lovely to hear from you, but I'm so sorry you are going through an anniversary. It's so difficult.

A lovely silver lining is your appointment and you are close to having another chance. I know you will be feeling anxious, that's totally expected, but you are so incredibly strong to still be here and trying after everything you've been through. It's your time ❤️

Sending so much love xxx

@myrainbowjourney its improved a lot thank you. I think maybe they did catch it as i nearly jumped off the bed at one point and then it seemed to ease up. Finally got my peak today too so hopefully will get my period in 10/11 days and can book in with the clinic for first super ov month! :) How are you doing today?

@VenusStarr - I hope you're ok. Anniversaries aren't nice. Be kind to yourself today. xxxx

@Tgrf55 oh that's exciting. The countdown has begun!
I'm not too bad thanks, feeling like I'm done with this week already and it's only Monday. I have booked in a consultation with an ivf clinic this week, I feel like I need to be prepared for what might be next. I don't know if we can afford it or if we are ready but I feel like I need to get the ball rolling at least in my mind. Makes me sad to think this is where we are at, but need to just keep hopeful, not compare myself to so many who seem to find it easy, and accept this is our journey xxx