Immune/NK cells - pred thread 29

[StillTrying10000]

Starting a new thread as the last was full.

@MrsMargot I've not had dizziness but there are such a range of side effects that I wouldn't be surprised. Did you ask the clinic? Probably a combo of the drugs and you having a tough time. The tiredness will also make you feel woozy I think. I hope you're feeling better.

@SunDance21 lovely to hear from you. I'm glad you are enjoying your break. When do you plan to restart?
All good here thank you. In what feels like my millionth TWW, keeping hopeful but also realistic - same old.

@StillTrying10000 thanks for the link. I've had it saved on my phone since Monday to listen but haven't got round to it. I'm working at home today so I'll tune in for sure. Gives me a nice boost that we are in good hands.

@whatsgoingon22 welcome to the thread. I don't have any experience of Humira. It sounds like it's a great plan for you though and hopefully will be a successful one, so try not to freak out. It is all quite overwhelming sometimes though, but we are all here for you to talk to.

@Tgrf55 sorry to hear about your losses. I'm a little similar. I had 3 early miscarriages and then an ectopic where I also lost my right tube. I was able to pick myself up relatively quickly after the miscarriages to keep trying but the ectopic knocked me for six. It was beyond traumatic and I still feel so much resentment about it all. It sounds good your tube was clear. Mine was a bit sluggish - slow to come through but it did eventually. It's constantly on my mind that it's not functioning so it's all a waste, but Dr S seemed happy for us to try super ovulation so I'm trusting his judgement.
I was really worried about side effects but I've been pretty lucky so far. Also, unless you are on a different dose, my 5 tablets add up to 25mg as they are 5mg each. So just check that xxx

@VenusStarr sorry for the delay. We went to the New Forest for 3 nights. It was lovely to get away and we were v lucky with some lovely weather. I triggered just before we went. This was cycle 5. We’ve done all our consents at another clinic for IVF next month if it’s a no as I feel we need to try something else and time isn’t on our side now. I hope you’re doing ok x

Everyone, hope you’re doing ok too.
On the pred side effect questions - it’s been 5 month on it for me and I’ve had no moon face but get very bloated around the middle, which I’ve never had before and find it hard looking in the mirror at a swollen middle for the wrong reasons!! It may just be me though. Much love x

@Tgrf55
Good luck with your treatment plan and journey! I'm just recovering from my third MC and will be seeking help from Dr S ready to start trying again near to the summer. Having just phoned my GP I've found out my hypothyroidism was sky high for antibodies when they initially tested, which I have never been told, so feel he is my best option now.
Could I ask how long did it take to get an appointment and your results etc?
Thanks in advance, hopefully I'll be back in a few months joining you all whilst TTC x

@myrainbowjourney - We do have very similar situations!! How old are you? I am 35 in May so hoping this all works for me soon. I struggled a lot after my MMC but the ectopic like you say - its a whole new level of trauma and grief. I was SO angry for a long time. I still am. I completely understand how you are feeling i am resentful about it too. It's just so unfair losing a tube. I am grateful that IVF exists though and that we don't need any tubes for that. Hang on in there with the super ovulation, how many months have you been trying that? Sending you positive thoughts - if you ever want to have a rant or moan feel free to message me because believe me, i understand!! Btw, THANK YOU for pointing out that the steroids are 5mg tablets! I thought they were 25mg and i was taking 5 of them a day (125mg a day LOL!!) I was thinking well surely with a dose that high my face will resemble a helium balloon! Thank god you told me haha!

@taffeta00 - do you get the bloated belly even after taking the prednisolone only for 10 days after ovulation? I was hoping the 10 days wouldn't be so bad - totally expecting side effects if I take it for 12 weeks though when/if i become pregnant.

@FfayeN thank you! I hope you are doing ok. I'm scared about the treatment but also feeling very hopeful - i do think Dr S is an expert and we have to have faith in him. It took me 2 months to get the appointment, we booked in January and saw him 14th March but i was recovering from my ectopic surgery so i'm not sure if they wanted me to recover a bit first and that's why it took 2 months (my Husband booked the appointment i can check with him though) My follow up appointment with the results was 2 weeks and 2 days later. Def get booked in so that it's in your diary. I hope you recover well from the MC, sending hugs xxx

@Tgrf55 Thanks so much for taking the time to reply I really appreciate it. Will get that appointment request in asap. I have everything crossed all goes well for you and will keep following your story. Same as all you ladies on here, take care x

Yep, I get very very bloated from day 1 of taking the pred for the 10 days. They also make me very angry/ anxious unfort. Hope you get in ok with them

@Tgrf55 I turned 36 in December. I feel like time is running away from me but I keep getting told I'm still young.
I have actually made a complaint regarding my care after realising I was living with this anger and it was just eating away at me. I had to go to the hospital for a scan and had such anxiety, so I had to get out my thoughts and feelings. I feel better for it, yet to hear the outcome.
I'm on my 7th super ov cycle. We initially were going for 6 but I felt I needed more time with the one tube scenario. And we needed more time to mentally prepare for the next step. IVF scares me, mainly because of the cost. But you're right, it bypasses the tubes and is definitely an option should we need it. I really hope we get a chance though. I had a few cycles of minimal response from my left side, and while I know the tube can move, it just seemed so much less likely. That said, I've heard so many people ovulate from the opposite side and the tube catches it, so I think it's more common than it feels.

Thank you for your offer to chat. It makes a world of difference talking to people who understand. Same applies for you ❤️

Haha no worries! I was worried about moonface too, silly the things that worry us. But I haven't had any real side effects yet. Like you said, I imagine I'll see more of them if I ever get pregnant and am taking them for longer.

Sending you all the love and positivity. Where are you at the moment? Waiting for cycle day 1?

Sending love to all. Let's hope we are all celebrating good news soon xxx

@myrainbowjourney Don't worry too much about your age, SO many women get pregnant late 30's and into their 40's. I think we are conditioned to worry after 35 though but Dr S wasn't concerned about that. I also made a complaint after the ectopic, y care was nothing short of shocking. I was handed a leaflet by a consultant who didn't even bother explaining anything to us, just mumbled about needing my tube removed whilst typing and then left while we were both crying. Glad you made the complaint, these things need to be addressed. Hoping you get a lucky cycle soon! So do you never release an egg from the left on the super ov programme or just occasionally? I had a 4cm cyst on my left ovary that was drained when my tube was removed. Dr S thought it had returned on my first visit with him but yesterday they were adamant that was a dominant follicle so i am praying that's the case because a cyst would probably stop me releasing an egg that side too. So i don't actually start anything until next month - due to ovulate imminently but Dr S didn't want me taking steroids until i have my booster jab :( Frustrating wasting a cycle but seeing it as another month of physical and emotional healing. I have had a lot of twinges/pulling on the side where tube was removed im not sure if it is scar tissue? A lot of lower back pain too. Everything has been different post ectopic, did you find that too? xxx

@Tgrf55 yes I do ovulate from the left, just typical that I had a few cycles in a row that were all on the right side. This cycle was the left so I'm hoping it's a positive sign.

What happened with your complaint? I wasn't going to at first. They did their own internal investigation as a matter of course (because they missed it and I ended up falling very ill and having emergency surgery, on my own and just being told I'd lose one, maybe both tubes, as I'm being taken into theatre. Honestly, shocking. But I thought I wanted to just move past it. It wasn't until I realised the impact it still was having on me that I decided I couldn't let it go.

I haven't noticed too many changes post ectopic I don't think, but I think maybe because I started my treatment 3 or so months after it so I didn't have much time to think about it. I think generally I feel more aware, so probably do feel more twinges than I used to xx

@myrainbowjourney The complaint is under investigation now because they came back originally and said that the consultant had said that my Husband and I had made her feel uncomfortable due to me challenging her behavior and not speaking to us etc. So i replied and said that the response isn't good enough and i want to take it further. Even the after care is shocking, they didn't even tell me how to care for my stitches. TBH it was the same with my MMC when i had a D&C. I think the NHS has to majorly improve their care when it comes to pregnancy loss!

Where are you in your cycle now? I have everything crossed for you that this is your lucky cycle! I know that most women have a dominant ovary and its just typical that ours is the one without a tube. You will get there, stay positive as hard as it may be.

I have so many random aches and pains since the ectopic. It takes a toll on your body that's for sure. My stitches became very infected so that didn't really help at the time.

Sending you lots of positivity and hugs. I hope everyone on here gets their rainbow soon. xxxx

@Tgrf55 I can't believe they said that to you. It's so frustrating when they try and come up with excuses. Mine was meant to be reported back by mid March but they called me asking for an extension as they thought it needed more investigation and they want me to go in and talk to them as part of it.

I'm either 4 or 5 days after ovulation. I had my trigger shot on Friday afternoon. Thank you for your good wishes. I hope you are able to fall quickly once you get going. Definitely enjoy this little break though, book lots of lovely things to do xxx

@myrainbowjourney thank you :) Really hope this is the month for you!
I have just tracked my ovulation again and i have gone from high fertility to negative - SO annoying! I just want to hurry up and ovulate so that i can get my next cycle going and start the super ov programme. Since the ectopic i have only had one peak - not sure what has happened with the other cycles it seems to just go to high fertility and no peak. This never used to happen pre ectopic. Really annoying. xxx

@Tgrf55 thank you 🥰🥰

What are you using to track? Could it be your peak happened between readings? I used to get multiple peaks sometimes, I haven't been tracking since this as obviously you don't need to. I tried and it just drove me mad because nothing seemed normal. It's such a tricky ride.

Maybe you ovulated already? Your scan suggested it was close? xx

@myrainbowjourney I'm not really sure what is happening. Pre Ectopic and MC i would ovulate around day 17-19 and have a 10 day luteal phase. Usually would go straight to peak or a few hours of high fertility and then peak. But now it seems to be lots of days of high fertility and no peak. I had a peak the first cycle after my operation though. I have no idea it becomes so stressful trying to track it doesn't it. I'm guessing once i start the programme, if for some reason i haven't been ovulating that the Letrozole and trigger injection would force my ovulation though so it wouldn't really matter? xxx

@Tgrf55 @myrainbowjourney
Try not to worry about which side you ovulate from. I never knew this but it's all just floating around in there. When I went for a scan my ovaries were 'kissing', one almost behind the other. The sonographer told me that those with one tube it goes to whichever ovary has mature follicles which I found pretty amazing. My sister wishes she'd been told this after an ectopic as it would have reduced some of the anxiety. Fingers crossed for you and hope this may help in some way. The photos were shown just don't give any context to how clever (sometimes!) our bodies are xx

@FfayeN thank you! Hearing things like this really does help with the anxiety so we appreciate it :) xxx

You're welcome. I couldn't believe it when she said they were next to each other, I asked so many questions 🤣

@Tgrf55 welcome! I am do very sorry for your losses… 😔 I did not have an ectopic but one of my previous gynaecologists said to me once that we could get vulgate from the right ovary but it may come down from the left. Apparently the system in there is not as linear as it is on the books. They are somehow connected. No idea if this is true but definitely worth investigating.

On the age front, I would not worry. Actually, all these age comments I kept on hearing first time around were making me mad. I was 38 when I had my daughter and I am 40 now. I had my first pregnancy (ended up in mc) when I was 36. The quality of your eggs are very very unique to you. It could be that someone in early 20s is a heavy drinker, smoker, genetic disposition, god knows what and the quality may be a lot more diminished than a lady’s in her 40s. As Dr S has said to me before, as long as there is one good quality egg in there you can have a chance for a healthy baby. I am very passionate about this to be honest. In the last 4 years I have upped my nutrition so much (following a tailored made plan by a qualified nutritionist) the difference I have seen on all areas of my life is insane. What health practitioners say about number and quality going down after 35 is true as a general rule but it does not mean that we all follow the same trajectory or that we cannot do something about it. I have noticed that Dr S has added coQ10 to his preconception plan. I was impressed as I have been taking it for a few years for egg quality and I question how come. He confirmed that it is for egg quality. We have so many things to worry about. We should not worry about that too. Your age is perfect ❤️

@myrainbowjourney I did not call the clinic but I checked the side effects and it looks like pred can cause dizziness. I went back to my diary from back in the day and I did not have dizziness before however you never know. This time it may have been that I got this lovely side effect. I am not complaining! As long as I do not want to eat the entire Fridge and the bakery in the corner I can cope with dizziness. 🤓

@FfayeN I am so very sorry for your loss 😔 I am crossing all my fingers and toes for you. I saw Dr S after my 3rd mc and I will never forget that someone finally saw my results and said ‘ yes obviously there is a problem but it is totally treatable’. That gave me courage. Hoping the same for you! ❤️

@MrsMargot thank you, I found out today (after being diagnosed a year ago) my hypothyroidism is of the autoimmune type, my GP has never mentioned this and I am sure I would have taken a different course of action with the previous 2 pregnancies. It also will hopefully be treatable. We are checking finances tomorrow and booking an appt as soon as possible and getting all the tests I can through my GP in the mean time. Hoping for a happy ending some day 🙏🏼 xxx

@FfayeN yes absolutely. Do as much as you can through the GP. They won’t do the more specialised ones but you can request a general blood panel, vitamins and possibly hormones. I have the feeling that Dr S will accept any tests that are not over 3-4 months old (I think!). But he would certainly do the specialised ones again even if you have them. I had half of them myself but he run them again to be sure. ❤️

I hope your scan today goes well @Arwen7.

Thanks for the link to the podcast @StillTrying10000. I'm part-way through listening - very interesting discussion.

Welcome @Tgrf55, @FfayeN and @whatsgoingon22. Sorry you find yourselves here.

@whatsgoingon22 I'm on another anti-TNF called Infliximab which is very similar to Humira, although it's for a chronic condition rather than because of my MCs. I was given the choice between Infliximab and Humira and at the time I opted for Infliximab because I didn't want to self-inject. I've been on it for over 5 years and tolerate it well although I do seem to be a bit more susceptible to colds. I know quite a few people with my condition on Humira and I've heard it's more comfortable to inject if you take it out of the fridge a little bit before hand so it's not so cold. When I was deciding between Infliximab and Humira I found a couple of videos on YouTube of people demonstrating how they do their Humira injections which I found quite helpful and are worth watching if you're worried about actually doing the injections. Happy to answer any questions on my experience with Infliximab although I appreciate it's a different anti-TNF drug.

@myrainbowjourney I also made a complaint about my maternity care in my most recent pregnancy. I haven't had a response yet and I complained back in February so I must follow it up. I actually wonder if the stress that was caused by the issue I experienced could have contributed to my most recent MC as it was right around the time the baby died. It's hard not to think the two are linked.

I'm currently on cycle day 21 and am still waiting for ovulation, so it looks like I either won't ovulate this month or the long period I had has delayed ovulation. I'll keep tracking so that I don't miss it if it does happen. I'm really struggling with my anxiety levels at the moment, although I desperately want to conceive I'm also terrified of the thought of being pregnant again, and I'm hating the physical aspect of TTC. It all feels so unromantic and a bit forced in a sense. It's very hard to deal with such conflicting feelings :(

@Sezmarelda1 thank you for the welcome! Sorry that you are here too - i hope you are doing ok.
I am also unsure if i am ovulating. Day 19 of my cycle now so assuming not. I kept getting high fertility on clear blue but back to negative now and haven't had any of my other usual signs of ovulation. Last period was 24 day cycle which is frustrating as this one will obviously be a long one. The joys of post MC and EP i guess!

It's frustrating that it takes our cycles so much time to regulate again after a MC @Tgrf55, and then to be getting mixed signals too just adds to the stress. I'm trying to see it as extra time for healing (emotionally as well as physically) rather than feel stressed about it and at the end of the day we can't change the time our cycle takes to do what it has to do, but it does feel frustrating when you just want to get on with TTC again. I'm not familiar with the clear blue ovulation tests but from a quick google it sounds like they detect two hormones instead of just one, is that right? I'm just using some basic ones and did get a darker test line this afternoon, so I'm going to take that as a positive and hope for the best. I'm also tracking my basal body temp so hopefully in a few days time I'll see a temperature rise. Some of the other ladies mentioned previously that it becomes a lot more complicated to track ovulation signs on the superovulation programme, so maybe once you start that it would be a good time to take a break from the stresses of tracking x

@Sezmarelda1 i know, sooo frustrating, especially being regular pre MC. But like you say, the body is healing. I always use clear blue they have worked for me twice now but thankfully with the super ov programme i don't need to do a thing as the clinic will tell me when to try based on my trigger shot etc. Takes away some stress at least! Good to hear you are ovulating - hope you get a lucky cycle :)

Hope everyone has a good weekend xxx