Immune/NK cells pred thread #33

[Jecca88]

Hey Guys, starting a new thread as we have run out of space - hope i have included everyone and sending lots of love x

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@Fletchasketch I'm so pleased you had a nice time away, it really does help. When everything got too much, I always tried to think what was good. Didn't help to much but sometimes stopped my mind spiralling too far. Don't read anything negative, it's not helpful and everyone's experience will be different. I ended up only sticking to this forum because some of the things I read elsewhere made me feel awful and it's not helpful when you're not feeling the best anyway.

@Newbeginnings22023 I found the Superovulation can take a bit of trial and error to work out, which is frustrating financially! I had a cycle where I had too many follicles, so had to adjust my letrozole dose. Also I used to ovulate quite late in my cycle but the letrozole started changing that. When I went the first few times the follicles were too big, so I worked out I actually had to go earlier for the scan. I can't remember what they said but I think is the optimum size from 18mm or something? So maybe he means your follicles will be too small when you ovulate, like I was told mine were too big when I ovulated so probably 'not viable'. (I hate that phrase with a passion) I also started using digital opk. Always worth trying though I think if your sticks are dark. Eventually your letrozole dose, follicle size and ovulation timing will hopefully marry up. Don't know if that makes any sense!?

@Hopeandfaith1990 Good for you 💪

@SWMum9 Nothing is ever silly as this is not an exact science, anything can happen!

Much love to you all ♥

Hi @Deerdancer34 thanks so much for your response, that makes a lot of sense. Really helpful to know it’s a trial and error, had I known this I wouldn’t have been so deflated. Hopefully there’ll be more alignment next month! I do prefer digital tests too, I just end up messing with them for some reason, putting the sticks in the wrong direction etc lol. But they’re great when they’re functional!

Letrozole hasn’t delayed or brought forward my ovulation this time around, let’s see how my body will react with a higher dose next month!

Hope all is well with you xx

I started the progesterone & pred today and shock I’m up at half midnight. My body feels like it’s aching into my bones and my legs are restless 😭

I know not being able to sleep is a symptom but can’t find out much about the other.

@SWMum9 the pred can certainly cause both. How early do you take the pred? I find it best when I take it no later than 8am. I still wake up early (around 5am) though but never earlier than that.

Hey guys, I have missed lots and see some new people joined the thread. I am sorry you are here but it is a safe space.

I returned from holiday on Wednesday night after a much needed break and was hoping to try and start trying to conceive this month again after the retained products were resolved in March. But I have had what feels like the worst few days of my life. We lost our dog of 10 years so suddenly the day after we returned on Thursday and when we left him and he was absolutely fine and whilst we were away he got really sick and turns out he had a huge tumour in his intestines. He died in the emergency surgery trying to remove it. He has been my source of comfort through all our struggles and has been with me through all my miscarriages. I cancelled my intralipds this month and can’t even think about TTC. I am consumed with grief and just really feel this was the tip of the iceberg. Sorry to be so down but I just need to know this will get better. I can’t eat or sleep and being at home - which was my safe space feels so tainted without him here. Not sure how much more loss my heart can take.

sending love to everyone ❤️

Jecca88, so so sorry to hear about your dog. As a dog owner myself and someone who has experienced this first hand I know how awful this is. I know that you are going to struggle with this and you emotions are going to be all over the place. I am just sending you a virtual hug hun x

I am so sorry, this is such awful news and must have been a horrible shock to happen so suddenly. I think you are right to give yourself a break to recover. Sending much love.

thank you @Objectiontime - does it get any easier? i know i am only 3 days in but i can't eat and the grief has taken over my body.

thank you @Fletchasketch - hope the humira is going well and that you enjoyed your break also.

@Jecca88 To be truthful, I think for me it got easier when I got another dog to love. You never forget but each dog is so different you get consumed with love for the new personality. You dont forget your love up for your departed friend but you embrace the new one and it makes things a lot better. The loss of my last dog was before my pregnancy losses occurred but if I really dig deep and think about it, if it happened tomorrow I would be devestated but through my grief I know I would want a new furry friend as soon as possible, just to channel my love, knowing that the past friend cant be replaced, but a new friend needs the same love.

@Jecca88 I am so sorry and so devastated to hear your news. Our furry friends are such sources of comfort to us in these difficult times, and the heartbreak you're feeling must just be so overwhelming. I've a dog and cats and I truly credit my dog to be the biggest reason I actually have been able to 'get through' the 5 losses over the past few years. Dogs are just so incredible and leave such a huge impact on our lives.

It will get better but it will probably feel very raw for a while. It sounds like although it was traumatic at the very end, he didn't suffer for long beforehand so there may be some solace in that.

So sorry. Sending you such a big hug.

@SWMum9 both the pred and the hydroxy affect my sleep. I try and take them as early as possible in the morning but it still wakes me up. Weirdly it doesn't seem to do this to everyone. I use the 'Better You' magnesium sleep spray - its amazing. Spray it on the soles of your feet and legs before bed. Its not expensive but I do think it makes a difference.

@Jecca88 oh hun I am soooo sorry to hear this. Our dogs are our fur baby’s and I can’t even imagine that happening to one of them the absolute heartache and grief you must be going through. You have had so much thrown at you mate I really do feel for you. Life is cruel, unfair and hard sometimes. Thinking of you and sending you so much love xxxxxx

Oh @Jecca88 i am so sorry for your loss. I don’t have personal experience of this but I have seen my friends go through this, some decided to bring a new pet home to ease their pain, and others decided not to, it’s a personal decision. Bug hugs xxx

Oh @Jecca88 im so so sorry, I got my little chihuahua a few months after my 15 week loss and I’ve channelled so much into him that I would have Into that baby I would be devastated if something happened I’m so so sorry I wish there was something I could say to make it better. Life just sometimes throws you a load of shit for no reason and it’s so unfair.
im just back from my holidays as well had a wonderful time when u was there but now im home thinking about the while shit show of ttc/ hanging onto if I even do manage, it’s one heck of a weight to bear isn’t it.
to give you a little laugh. I decided to burn my old ovulation tests in my fire pit today. Crikey I thought they would be really flammable but I used about 20 matches, a ton of kindling and they still wouldn’t burn i ended up using a fire lighter and a whole log and smoked out the whole garden. I did get those awful things burned in the end.
i have my appt with the donor egg counsellor tomorrow eeek scared and excited xxx

Does anyone hear know why hydroxy & prednisone would be offered over intripilids or vice versa?

I am being seen under NHS and having pred, hydroxy & progesterone just wondering if the protocol is cos I’m NHS and not private?

what are other people’s experiences? 3 weeks in and feeling ok. Quite tired and the pressures get a bit messy 😆 but feeling a lot more positive about things.

Pre protocol all I could think about was getting pregnant and now I feel weirdly calm…

Hi all, could those of you who were told that prednisone should bring nk cell cytotoxicity levels down enough without intralipids let me know what number the tests showed the pred should bring them down to.
I've probably mentioned before that I cant have the intralipids because of allergies but pred and intralipids were what worked best for mine.

@Gizmo1983 I've done that with the burning before 😂it was also anti climatic! Hope your appointment went well? x

@SWMum9 NHS don't currently offer intralipids, I think its too expensive. I'm CD1 (booooo 😓) and feeling despondent. I think we've decided to pursue IVF now, its coming up to a year since we last conceived and miscarried in Sept 2024. The Pred/Hydroxy/Prog regimen is a solid one. I remember feeling supported and happy to have a plan in place when I started it last year.

@Jecca88 How are you doing?

@Objectiontime Sorry I'm not sure, I don't think I was ever given this info.

Hi all, is anyone else on Hydroxichloroquine here? I'm still in phase 1 and haven't started it yet, but have read elsewhere that it needs 6-12 weeks to take effect. It's a small thing but getting so fed up of not being able to try and to be honest; condoms, an extra 3 months on top is just too much!

I hope, despite everything that is rubbish atm, you're all able to get out and enjoy the sun a bit this week. Sending love xx

@Hopeandfaith1990 i was similar to you, never had an issue getting pregnant but after the 15 week loss I didn’t get pregnant for a year so we went to ivf it worked 1st time but then sadly lost at 10 weeks. We did another cycle but I only got 3 follicles they said I’d be lucky to get one egg so we abandoned it. I’ve had such a nightmare with retained tissue ( 6 months) am all clear now but am pretty designed to trying a donor egg, I’ve had 4 losses now I’ll be 42 in July so just want to give a younger maybe more resilient egg a chance as apart from the nk cells no one can fine anything wrong and I was on the lipids, pred, hydroxy etc. my only other choice would be to go on some of the stronger drugs but hubby is 100% against that plus in all honestly it would be an impossible amount of travel.
burning the tests was hilarious and absolutely not as I pictured my vision was to be standing in front of a roaring fame and them disintegrating on impact instead I ended up kneeling down wasted 20 matches, getting a fire lighter and poking them into the mini flame which was mainly black smoke and I absolutely stank of smoke for the rest of the day 😂😂😂

@Fletchasketch I am. I didn't realise you were supposed to wait 6-12 weeks to take effect so I continued trying as normal as soon as I started it. I didn't fall pregnant in that time though so I can't advise on that. I think @SWMum9 posted on this a few weeks ago.

Loving the sun despite being CD1! 😂

@Gizmo1983 its so frustrating isn't it, and it makes the IVF decisions really difficult because obviously we could conceive quite regularly in the past but its just getting very hard every month being negative now.

Donor egg sounds like a positive move - is the process complicated? Drugs stronger than the ones you've listed sounds a bit scary - I think I'd agree with your husband.

I burned all mine in the sink which was probably even more of a letdown! I also burned all the miscarriage paperwork haha. Basically wanted to burn anything I could!! Maybe this is more normal than I thought 😂

@Hopeandfaith1990 we started ivf exactly a year after our loss we had set that as our target that if it hadn’t worked by then we would start I had just turned 40 after the loss though so time was never on our side I’ll be 42 in July 🤦‍♀️.
yeah I don’t really fancy going into anymore medication either I think it’s a fair call if I never get pregnant part of me will always wonder what if but I guess everyone has a limit and this is ours plus I dread to think how much those cost and with all the extra blood tests. Mr shehata said for them I’d have to live closer ti Epsom for some time to do it and that’s never going to happen lol.
my fear is we do the donor egg and that doesn’t work either then there’s not really anywhere else to go and I guess we will deal with that at the time. The donor egg process is actually really easy believe it or not much easier than ivf. If we go ahead it will all be done in the uk except the sperm donation and putting the blast in so u need to fly to Spain twice but u can be there and back in a day. Or u can stay for a week and do both just have to wait for the fertilization etc. you are guaranteed 2 blast and if u get any more it’s a bonus.
I burned all the paper work and the tests as well I put them in the woodburner as it was winter and they did go up in flames I was so glad to get rid of that paperwork.
hubby is still convinced we will have a miracle and get pregnant naturally there’s no known reason I can’t but I just can’t see it happening. If it all goes wrong then I suppose it will tell us it’s not my egg quality causing the losses but if it isn’t that then I guess we will never know I’m scared to think that far ahead.
xxx

Yes I have just started hydroxy/pred/progesterone. The doctor advised me to take hydroxy for 4-6 weeks to allow to build up in my system and then start the double protocol.

we ended up DTD once in the ovulation window so decided F it let’s just give this month a shot. So we haven’t waited the 4-6 weeks as suggested.

I know that’s going against the doctor but it just felt right and I didn’t want to waste the month. Weirdly this is the most relaxed I’ve felt in MONTHS. Usually I’m going crazy in the TWW.

do what feels right for you. It’s really hard.

Thanks @SWMum9 and @Hopeandfaith1990 this is helpful. I can see Shehata insisting on a longer build up, but having checked my cycles- it looks like I'll be away without my partner anyway for the first potential cycle so end of July may well be the first available opportunity in any case. Glad to hear you're feeling relaxed, it makes such a difference to overall wellbeing. I'm off to yoga this evening which I'm hoping will have a similar effect :).

Looking for a bit of guidance with my double protocol.

I have to take pred & progesterone from the day of positive digital ovulation stick for 10 days. Then do a FR test. If positive continue meds, stop if negative.

I’m 10 days tomorrow but my period isn’t due for another 4 days.

what if it’s too early for things to show on a test and then I stop taking medication that could help me?

Personallly, I wouldn’t stop either medication until AF started, just in case. 10 dpo is early to be sure if a negative in my view x

I’ve felt like this in the past too. With last pregnancy, I stopped the medication as instructed at a negative 10DPO test and then I tested positive on 12DPO. I restarted the medication on 12DPO. I lost that pregnancy at 9 weeks but I’ve no idea whether those two days affected anything.

Personally, I think enough of the Pred and Progesterone would have been in my system and two days wouldn’t have made a different. I also wasn’t on the Hydroxy then.

I think they say 10DPO so that if you’re negative it doesn’t prolong your cycle and delay the start of the new one so you can try again.

i asked the midwife about this when I first started this protocol and she said it would not impact a pregnancy if you stopped the meds and then started again.

10DPO IS early to stop the meds but equally id rather not prolong the hope if it’s negative.