Immune/NK cells pred thread #31

[VenusStarr]

Hi all, we've fill up the last thread, so starting a new one. Will start tagging but feel free to add anyone I miss!

@RumandSpinach honestly, the only thing I've had is ad hoc insomnia. Every few nights I'm awake in the early hours for absolutely no reason. After a few days of this it catches up with me and I sleep for 10 hours straight for a few days. I've had no issues with weight gain (I've lost 2kg and didn't need to, am now 49kg), no moon face, no mental health impacts, etc. I too was very worried but it's been totally fine.

Would caveat that I fell pregnant first cycle trying so hadn't been through months of cycling on and off medication prior to this. I'm naturally a very active person, have kept up my gym routine, have a toddler to care for and work full time. So I haven't really had time to sit still and think about how all the meds are affecting me tbh, staying busy and active has probably prevented some of the side effects. I haven't had an insatiable appetite at all, indeed my appetite has decreased due to mild nausea and food aversions. I also haven't felt like I have loads of energy from the steroids, I guess my general lifestyle is quite tiring so I didn't feel this perk of the meds!

I'm pleasantly surprised by how little the steroids have affected me and I hope the same goes for you 💗

@RumandSpinach and thank you for the congratulations, fingers crossed we make it over the line🤞

Hi everyone this is my first time posting but hoping those on this thread can offer some encouragement! I am currently 12 weeks pregnant after 5 miscarriages (4 recurrent) on Dr S's NHS plan of steroids, Hydroxychloroquine, progesterone and aspirin. I am due to start weaning off the steroids but I am petrified it will cause a problem. I have aggressive NK Cells and tested positive for anti nuclear antibodies. Any words of wisdom would be appreciated!

I'm just 9 days behind you @KMG7385 and am on steroids, progesterone and intralipids for high nk cells following the loss of 3 babies last year.

I fully understand how you're feeling, I think we have to trust the process as we've been fortunate for it to be working so far. Around now the placenta takes over so the baby is supported by that rather than relying only on our hormones.

I'm on 20mg progesterone and will begin tapering by 5mg every 5 days from 27 Feb. I'm on 2x progesterone pessaries until 16 weeks, I may continue taking 1 pessary per day for a week or two after as feel a bit worried about a hard stop. I'm on 4-weekly intralipids until 20 weeks.

*20mg prednisone, typo and can't edit

@fleur89 thank you. That's really helpful. I'm not on intralipids as am NHS but I was wondering the same as you with the progesterone. I'm a bit nervous to just stop it. I'm trying very hard to trust the process it's just hard isn't it.

@KMG7385 and @fleur89 just wanted to say, I totally remember these feelings on my son - be we weaned off the steroids, intralipids and progesterone as prescribed and had a healthy baby boy x

Hello @KMG7385 i’m in exactly the same position as you! 12 weeks after 5 miscarriages on the same protocol as you, but with intralipids. Today I started to wean off the pred and it does worry me but I’m telling myself this is the protocol that has worked for so many others. And it’s reassuring to stay on the hydroxy and Cyclogest for longer. @MotherOfShihTzus thank you for sharing your reassuring story ❤️ it’s wonderful to hear of others who have been in our boat before and had success.
@fleur89 hope all is well with you! I also could have written your post earlier too- I’ve also not had any pred side effects and ended up losing 2kg too (and we are the same weight!). Dr Edge was surprised and said she’d expect me to be gaining weight on the pred, but I don’t think it’s an issue as I know I’m eating a lot still and expect to gain weight later on.
I have my 12 week NHS scan tomorrow - very nervous! Despite a good scan a week ago we are primed to expect the worst. And it’s not only the worry of whether the baby will be alive but also the tests for chromosomal abnormalities that adds extra worries. Keep your fingers crossed for me ❤️ xx

@MotherOfShihTzus thank you so much for your message- positive experiences are very much appreciated at the moment!

@Lily1990 yes I am pleased I'll be on the Hydroxychloroquine and cyclogest longer. I won't miss the pred I've definitely gained weight and feel very bloated and puffy and I was on the larger side already. I've also had horrendous nausea so it's not even masked the pregnancy symptoms like I've read it has with others!

I hope your scan tomorrow goes well. Ours was last Thursday and I was in tears before I even got in the room!

Can I ask what Pred dosage most people are on?

mine is low (10mg) and with my new test results of high cytokines, I’m feeling as though I should increase it. However, of course I can’t get in touch with my specialist… no appointments with him for 2 weeks… why is it always like this!

Hope your scan went well @Lily1990 - thinking of you 💗

@Pupsandturtles I'm on 20mg but start tapering off by 5mg every 5 days from next Tuesday if my 12 week scan goes well

Thanks @fleur89 are you on anything else?

@fleur89 asking because I see lots of people on these threads on a whole host of meds- Humira, IVIG, intralipid, etc

@Pupsandturtles I'm on 2 x 400mg progesterone pessaries until 16 weeks and intralipids every 4 weeks (plus the progesterone). In addition I'm taking the standard high dose vitamin D, omegas and multivitamins.

My only issue is elevated nk cells and I have hyper fertility so I'm probably on the most basic immune plan. Prior to conception I took very high dose coenzyme 10 for 3 months prior to trying to boost egg quality. This was per Dr Shehata's recommendation too.

Dear all, after my ectopic last summer, I joined a charity counselling programme and decided to take a break from the thread but I have found it so helpful learning about everyone's journeys that I thought I would share my journey/update. (Ps the counselling was incredible and has helped me feel more like myself than I have for the past 2 years. I really recommend speaking to someone who is impartial and the charity I went through had a 10 step programme to follow which gave it a really good structure).

Brief history: 3 early miscarriages at 5.5 weeks, came to Dr Shehata, 3 months of trying naturally with medications and then 3 Superovulation cycles, the 3rd one ending in an ectopic. So after 3 months out due to the Methotrexate, I started the Superovulation cycle again but on 4 tablets, which produced a good response the 1st time but 4 follicles the 2nd time which Dr E said she didn't want to trigger. It was quite heartbreaking because it feels a waste of a cycle & pennies...Also I thought Chriatmas spirit and having had a break might mean quick conception so it was all a bit disheartening, anyway we dropped back down to 3 tablets (Note: a higher dose isn't always best!).

On the 4th cycle since ectopic I conceived and due to my ectopic last year, I went to EPU today for a 6 week scan (so I could cancel CRP & not pay if it was bad news again...). I'm pleased to say there was a little baby in the correct place and a heartbeat, so the 1st hurdle has been achieved. After 3.5yrs I never thought I would reach this point but what has amazed me and kept me going is the strength and perseverance of all the women here and that there is hope.

I have had humira jabs and then been on 25mg of Prednisolone, 2x 400mg Progesterone, low dose aspirin, Intralipids, multivitamins, Vitamin D & COQ 10. I have managed to get the hospital to prescribe the Progesterone but not the steroids but at least it saves a little bit. Please do ask if any questions about my journey but what I have learnt is that SO is basically trial and error, I found it hard when I didn't get pregnant straight away on Dr S's plan. But the one thing Dr S gave me was a plan and hope whereas the NHS just told me to come back when I was pregnant which wasn't good enough for me. As I lost my babies so early, I felt I needed early support which Dr S gives you from ovulation.
I know it is early days but this is the furthest I have ever got, so a big milestone! I have been keeping track of all your journeys these past 6 months and sending you all love and strength 💗

Hi @Deerdancer34 I'm really happy for you- how lovely to hear that your journey is progressing so well! How are you doing now?

Can I ask what the motivation was for Humira? My Dr doesn't seem to want to prescribe it, but I'm seeing lots of women on here who use it. He only seems to be considering pred, IVIG, and intralipid. I'm also confused about whether it's better to downregulate immunes BEFORE TTC, and wait till they're in the correct range, or simply start the meds around ovulation. Which approach did you take? Finally, can I ask what motivated you to move to IVF after trying naturally with meds for 3 cycles? Was a 3 month try Dr S's recommendation?

Thank you, and congrats again.

Also, if anyone has immune success stories to share, I’d love to hear them… I’m getting to that point of thinking ‘there’s no way this is ever going to work.’ Would love to hear from some people who can prove me wrong!

(context: this was my first month on Pred after 3 early losses, no BFP at all.)

@Deerdancer34 delighted to hear your lovely news. Sending you best wishes for the next few months!

@Pupsandturtles I haven’t been on here in a while but thought I’d share my own story in the hope that it might help you and others… I had 3 early MCs between December 2019 and November 2020. Went to Dr Shehata in December 2020 and was prescribed hydroxy while TTC and intralipids from BFP (as well as the usual aspirin, vitamins etc). I didn’t manage to fall pregnant for 4 months but that one stuck and we had a little girl in January 2022.

When she was a year old we started trying again under a different doctor as we don’t live in the UK and travel wasn’t going to be possible with a baby at home. My doctor suggested not using immune meds this time as my white blood cells were apparently normal. Anyway I conceived straight away but unfortunately that ended in a MC at 6 weeks. I then insisted that we follow the plan from my successful pregnancy and I am now 36 weeks pregnant with our second baby.

I hope this helps. Throughout my journey I have found this thread to be a fantastic resource. Sending you love and best wishes.

thank you @NessyT91, appreciate you taking the time to post an inspiration story!

@Pupsandturtles I am a success story. I had 7 miscarriages and went on to have a healthy baby boy in November last year under Dr S. We did end up doing IVF though as I stopped getting pregnant on the meds. We also did PGT-A testing on the embryos to rule out chromosomal issues. I was on Humira, intralipids, 25mg pred, progesterone, fragmin. It was a heartbreaking journey that took 3.5 years but obviously all worth it now. Keep going ladies! ❤️

Thanks @Amy00. I’ve heard of a few people saying they stopped getting pregnant on the meds. Do you know what the issue was?

@Pupsandturtles I'm not sure to be honest. I've seen the same thing with people struggling to get pregnant. Could maybe be the progesterone or the pred from ovulation making the uterus more "fussy" about what it accepts - I've seen that rumour before. I also read you can start meds from BFP as other doctors recommend this. But Dr S is a firm believer in starting from ovulation as he thinks it doesn't work as well if you start later. I've seen people have success on here before when they have started meds from BFP but it's all anecdotal!

Hi @Pupsandturtles

Another story of successes here. Had 3 losses in 2019 prior to seeing Dr s - one at 20 weeks in, one at 12 and another at 10. Last two had chromosomal issues but first loss was unexplained. My NHS consultant suggested I see Dr S. We went privately. Then covid hit.

I didn't do well on pred anyway and I took hydroxy and did ovulation intralipids. My son was born may 2021. A very stressful pregnancy in many ways.

We started trying for no2 when my DS was 18 months. It took us 10 months to conceive and I was 37 nearly 38. The clinic wanted me to do superO but wasn't keen. I was also quite naughty and didn't do ovulation intralipids but had hydroxy and the rest of the meds. The expense killed us this time but I'm nearly 37 weeks with a little girl. This pregnancy has felt very different - probably as I have a toddler to take care of so more distracted. No idea if the immunes helped or the issue was 'fixed' but wasn't prepared to try without them.

Hope that helps. Xx

@KtAgs awww many congratulations! I am so happy for you. Your story sounds very similar to mine except I didn't take the hydroxy as it made my hair fall out!! Also I'm much older 🙈. My son was also born May 2021 😃 on our first try of SO with Dr S.
We started trying for number 2 with dr s when my son was 8 months old on SO but it didn't work this time. It took us 10 months before I conceived naturally after taking a break from 8 failed SO cycles and I had my baby girl in July 2023. I was on more medication with this pregnancy than the previous pregnancy as I was also put on GCSX and metformin on top of the standard medications. Either way both methods worked with dr s. So my son was born 2 weeks before I turned 40 and my daughter was born a month after I turned 42 😬.
Prior to this I had 3 losses plus I lost a twin when I was pregnant with my son 😞

Thanks @KtAgs and @Sophi81 ! What is superovulation?

I’m in 2 minds as to whether to pursue natural cycles plus immunes or IVF plus immunes…. Part of me thinks let’s throw everything at this… on the other hand, I don’t want to go through the pain/ expense of IVF if it’s going to take a while to get my immunes to the right place.