Immune/NK cells - pred thread 30

[Sezmarelda1]

Starting a new thread as the last one was full. Please tag anyone I may have missed from the old thread...

@Sophi81
@InvisibleDreamer
@birdbybird
@Ralowi
@HoldingOn2Hope
@MyEasterEggs
@Tgrf55

@Maxime34 Sorry it was a BFN - it can be so deflating, can't it?! this is the second month I've been TTC. Last month I had a chemical pregnancy. Although by far the least physically distressing - it was so disheartening as the first on treatment. I'm also a little confused about when to start progesterone. Was advised that as my cycle is 26 days - I should start using it from CD 13. I've just taken a test 5 days before my missed period and was negative. But didn't use FMU and last time I also got a negative around now and then a positive a few days later. Hard to know whether to carry on using the progesterone- especially as it can delay your period. How long have you been TTC on the treatment? x

@Hayley220 I was quite relieved to begin with as I've been on steroids before for Crohn's and really suffered with the side affects. I also have high NK cells but I was so optimistic the Hydroxy would work. Now that I've had a chemical pregnancy - I have an appointment in April to assess whether I also need steroids. They give so little info but did say it could still work with just hydroxy so can keep trying while I wait for my appointment x

@Hayley220 hey, I'm with Dr S too but I'm on the pred rather than Hydroxy but I've seen plenty of people on these threads on one or the other or both so I think it's just dependent on what you need to lower your levels. So far no side effects on the steroids at all but the progesterone is hell I absolutely hate it and mentally really messes with my head as it literally makes you feel so pregnant even when you're not. I was told to start taking it from a positive ovulation test but I know some people start on around 3dpo and then stop after 10 dpo If you've not got a BFP.

@SReyn good luck with testing, keep us posted. I'm on to my third cycle on plan but coming up to a year TTC #2. We had no issues with conceiving my DD but since starting for a second I've had three early MCs hence why I'm under recurrent miscarriage care now. I know I need to give the plan more time but it really does get harder and harder the more time goes on.

hi @Maxime34 are you under shehatas nhs clinic or private? I thought I already asked you this but can’t find our conversation so sorry if I am repeating! So no hydroxy, steroids instead? I guess it all depends on yours numbers from the blood results what they prescribe? I dont like progesterone either, I only took from a positive test last time so I’m not looking forward to the side effects from ovulation. It makes me really hungry too so I guess I will be putting on weight with them! Fingers crossed we dont have to wait much longer and this is our year. Xx

Hi all,

Just writing this point to get some advice from anyone.

Im on Dr S's complex plan and fell pregnant taking HCQ, omeprazole, prednisolone, intralipids and aspirin. According to my period I should have been 6 weeks 1 days but i know i ovulated late which makes me 5 weeks 1 day today.

Unfortunately on Wednesday i had bleeding (enough to fill up sanitary pads) and Dr Edge wanted to see me right away. She scanned me on Thursday and said she thinks I'm having a molar pregnancy as she could see a sac or i have a lot of blood clots in my uterus and to wait until the following week but continue on all my medication. She called me the next day and said my HCG was 120 so decided to rule out a molar pregnancy but then decided it was blood clots that she could see on my scan. She did also say that according to how many days past ovulation i was that my HCG was fairy low but not to worry. The bleeding stopped but started again yesterday which was dark brown and VERY clotty- i knew what was happening.

I called my local EPAGU and they offered to scan me this morning and they ruled it an incomplete miscarriage because they couldn't see anything apart from blood clots. She said there was no evidence of pregnancy and even my urine test was a faint positive when on Thursday i had a dye stealer on FR.

So this is now my fifth miscarriage even on Dr S's plan and I'm not sure what more they can offer me. Im on the highest level of protocol but it still hasn't made a difference.

Dr Edge and Dr S have requested to see me this week for another scan and follow up consultation but I'm not even bothered to go because I know the scan will not show anything. The damage has been done.

I guess my question is has anyone been in this situation before and is there something more you think i can be offered to prevent this happening again? I feel lost because i feel like i have exhausted all the medication options he can offer me and its still not happening. Im so confused and any advice offered would be much appreciated!

I'm so sorry to hear this ❤️ @comingsoon786110

my experience was slightly different. We did an ivf transfer and my protocol was with fragmin and lubion onto pg the hydroxy, pred, intralipids. We saw a heartbeat at 6+2 but measuring 2 days smaller. By the following up at 8 weeks, the heartbeat had stopped (we think a couple of daysafter the first scan). I had surgery to test the baby and she was normal / healthy. So Dr S added gcsf to my plan. I've not been pregnant since. But I do know others who were on gcsf having gone through similar and it worked.

We're not doing more ivf yet (might not do it again) but we will be ttc with superovulation in the Spring. So I won't have the extra progesterone or blood thinner injections.

One thing we've just discovered is that dh has ureaplasma. (Hes seen Dr Gordon at crp due to higher (ish) dna fragmentation. The doctor wasn't worried about that but suggested this pcr test. I'm waiting for my test results but a hidden infection might be the missing link. Our last pregnancy should have worked - our main issue is very high activation, 3.05 but we lost her at the same point as my other pregnancies. The only difference is we saw her heartbeat this time.

Sending love ❤️ xx

Sorry, having real issues posting - the lubion and fragmin was on top of the same meds as you x

@VenusStarr thanks for responding.

I dont mind trying anything at this point, let's see what he says at the appt. I will be refusing the scan though because there is no pregnancy tissue left for them to do checks on anyway so dont see why i should pay for a scan three days later- not like the end result will change.

Also i dont think i will be able to afford the GCSF injections so wont be giving that a go.

Sorry to hear about your issues too! Its so hard going through a miscarriage especially when you have heard the heartbeat as well.

Sending love 💕

@comingsoon786110 I'm really sorry I can't help but I wanted to say how sorry I am to hear what you're going through. Have you been on the plan long? I hope they will have some suggestions for you and I'm glad they want to see you quickly at least so you're not left to wonder what to do next.

I'm seeing Dr S through his private clinic @Hayley220 but only because I was told it was between 6-9months wait via the NHS. I am local and Epsom is my hospital so i would rather not pay the insane ££ but we just really wanted to get the ball rolling asap. It'll all be worth it if it ends in our rainbow baby, as you say fingers crossed this is our year.

@Maxime34 ive been on the plan since October and it was the first month trying but unfortunately it ended like this :(

Thank you for your message ❤️

I am undergoing treatment with St Mary's RMC under Prof Lesley Regan and she has run tests and done a 3D scan and has said that my uterine cavity may be mildly arcuate or heart shaped and she thinks this is what is causing me my miscarriages all before 6 weeks.

I was supposed to have a hysteroscopy last week for this to rectify the issue (if there was one) but because I was pregnant i had to delay it (didn't completely cancel because in my heart i knew i would miscarry this pregnancy as well). This is now set to be in March causing even more delays.

Anyway, we shall see what happens on Wednesday. Hopefully i can get some answers!

I'm so sorry @comingsoon786110 . Is this your first miscarriage on Dr S's plan? If it is I'd encourage you to try again if you feel able to, even if they can't offer you anything additional treatment-wise. I'm under Prof Quenby and my first pregnancy on her plan ended in a very early miscarriage with very low hCG levels, but we tried again on the same immune protocol (the only thing we added was Clexane as a precaution) and I'm now almost 32 weeks pregnant. Even in women with recurrent miscarriage caused by immune problems it's still possible for miscarriages to occur for more standard, non-immune reasons like a genetic problem in the developing embryo, in which case no amount of immune meds would have saved the pregnancy, but they could still help in future pregnancies if that's what's happened. I'm so sorry you're having to go through this all again, sending lots of love and strength x

@Sezmarelda1 hi lovely, are you with Quenby at Coventry? I'm just waiting for my results via Prof Brosens there: I saw Prof Quenby last year for Endometrisis but she didn't offer anything in relation to immune protocols then. What is the treatment plan you have with her if you don't mind me asking?
I'm hoping to get my results back from Brosens in the next two weeks 🤞🏼 xx

Hi @FfayeN , yes I'm with Prof Quenby at Coventry. I have an autoimmune condition so she was happy to treat me with pred without any testing. My current treatment protocol is prednisolone, progesterone, high dose folate, heparin and aspirin (although I've now stopped the pred and will soon stop the progesterone, with the other 3 meds continuing until delivery/after delivery). I'd had two first trimester losses and two second trimester losses when I spoke to her, with a fifth loss with the first pregnancy on her plan. My second pregnancy on her plan is going well so far so fingers crossed 🙏

@Sezmarelda1 aw I'm so sorry for all your losses. It's good she's open to it, with my thyroid she was quite certain that it wouldn't cause an issue if my levels were ok, so it's reassuring knowing that if she thought pred would have helped she would have prescribed it 😊. Each time I've been there they've been so lovely 🥰 xx

Hi I just thought I'd share an update as I had my follow up with Dr S last week. (for anyone new, I have unexplained infertility, have had 4 failed ivf rounds and 1 chemical with my first ever bfp in 4 years of ttc- my issue is failed implantation and not getting pregnant in the first place)

I already knew I was positive for ANA from previous immune blood tests during ivf, but with Dr S we found that my NK cell count was normal, but the activity was classed as 'high' so I have been put on the complex plan. He did mention this could be the reason for failed implantation, however OH is also waiting for DNA sperm frag test results to come back too.

Like you @Hayley220 I am only on the hydroxy but not steroids. If it's any consolation I did ask him the question and he said they have very similar success rates so it would be fine just being on the hydroxy.

I've started taking hydroxy, have to wait 4 weeks before we can then start our superovulation plan with letrozole. I will also have intralipids during ovulation and the usual progesterone too. I feel like these 4 weeks will drag - i'm so eager to get started!

Hi @star2022 are you at Crp clinic or the nhs hospital? Thats really reassuring to know that you are just on hydroxy too. If private I guess you will be having intralipids?

xx

@Hayley220 I'm at the CRP clinic - and yes private and will have the intralipids. Are you nhs? Does he not give you steroids/intralipids if nhs?
I guess with us we will try a few cycles with just hydroxy and see how we go, if he says to add in steroids then we can, but at the moment I'm quite happy just having hydroxy as I've had prednisolone before and it gave me side effects and withdrawal effects too as well as moon face lol x

@star2022 im nhs, they have given hydroxy. They do also prescribe steroids on nhs but you wouldn’t get intralipids. Im really glad to hear it’s not just an nhs/cost thing that they try hydroxy first though! X

I'm so sorry @comingsoon786110. It must be so hard having a loss after being on Dr S's plan, and hoping/believing it will help. Is this your first loss on his plan? I know he has said to me that you can still have a loss for normal reasons - such as genetics - and therefore it's worth trying again on the same plan if that happens. Have you spoken to anyone at CRP to ask what next?

I've just started trying again, first month on Dr S's complex plan - so I'm on Hydroxy, pred, cyclogest and aspirin, and I'm supposed to have intralipids preconception but at the moment we can't afford it! So we are trying without. I'm also trying super ovulation on the NHS, which means no trigger but I'm on high dose letrozole.

I was wondering, for those who have taken letrozole before - can it push ovulation back later than normal? And has anyone had a large 'cyst' on one ovary? I'm not sure what it means but today I had my follicle scan on CD 12 and on my right ovary I had 4 follicles measuring between 8-13mm, and on my left I just had a whopping big cyst which is 26mm... I left feeling very deflated.

What would you expect to see on a scan around cycle day 10-12? They have called me back in on Friday, which will be CD 15, for another scan. I'm confused how CRP do super ovulation with only one scan on CD 10 - unless my body is not responding as it should to the letrozole and you would normally see more on this day? Ahhhhh NOT enjoying the monitoring and tracking scans at all - especially as the scan room is the exact one I found out about my latest loss.

Sending love to all x

Hi all. Just popping back in as we're finally making some progress. I'm restarting hydroxy today in preparation for superovulation/ ttc in April. We've both been found to have ureaplasma and so will be doing a course of Doxycycline. Although the nurses don't think it would be a contributory factor in our losses (have had 2 on the full complex immunes with Dr S). But I'm glad to be getting it treated as it can't make things worse for us!

@HopefulH I found with letrazole both times it pushed my ovulation back. I was on 7.5 both times. First one I responded ok but had thin lining so needed extra estrogen. Got 3 follicles but bfn. Both times I had 2 scans (££) Second time was really slow response, only 1 follicle and ovulated on day 20! Usually I'm day 10. So my superovulation will be with gonal f and 5mg of letrozole with estrogen.

I'm sorry this process is triggering for you. I hope your next scan brings good news ❤️

Lots of love to all xx

@VenusStarr That’s good news you have found something that might change things for you. I think having an infection can really affect the quality of sperm too - so it definitely might help. Did you have your losses tested that were on the complex plan?

So I’ve had a blazing positive ovulation test this morning so now I think the ‘cyst’ might actually be a ready to pop follicle… but at 26mm is probably a bit on the big side, so not expecting things to work out this cycle. Not even sure if I should bother taking the cyclogest and prednisone. I might ring CRP and ask what they think. My lining was at 7.5mm yesterday too so a bit on the thin side for ovulating, although I know it could grow a little over the next day or so.

@VenusStarr Did you fall pregnant via super ovulation before with Dr S? I’m thinking I’m going to have to try and find the money to do it with CRP - as I’m not sure the NHS clinic has interpreted things correctly at all! Do you know what lining thickness CRP want you to have by ovulation? Sorry for all the questions! X

Thank you @HopefulH dh's sperm dna fragmentation was slightly higher than normal too (16%) so we're both on impryl now as well. He had his testosterone tested and it's 12.8 and Dr Gordon said 12 was the cut off so thinking he might also prescribe clomid, just waiting to hear - apparently they use it successfully in men. Who knew?!

I didn't conceive on superovulation sadly but only tried twice and it didn't go well either time, so hoping third time lucky with a new protocol and extra meds (am on gcsf too).

My first loss under Dr S was a chemical, but it was low progesterone, so added lubion injections as well. My second was a MMC and she was tested as healthy. That's why he's added gcsf to my plan. But my third transfer just failed - didn't have good quality embryos though. We've had a big break now, it'll be 6 months off ttc.

It does sound like your about to ovulate. What made them think cyst? Did you trigger? I think that makes you ovulate all good sized follicles. Check with the nurses and see what they say.

Dr S is less fussed by lining. They think 6mm+ is ok and shouldn't impact on things. So I think 7.5mm is ok. As long as its triple layered, that's the important part. X

Meant to add, both my losses with Dr S were ivf pregnancies. We're not going to do ivf again - well definitely not anytime soon. Want to try superovulation for a few months first. My first 4 pregnancies were natural conceptions @HopefulH

Hi @star2022 your appt sounds like it went well and you have a plan in place - that's great! It sounds like we are in a similar position...I have normal nk cells I think too but the activity is "high" so I am on complex too. But he also said that it doesn't necessarily mean thats why im not getting pregnant! We are thinking things through but are likely to do a last ivf egg collection as amh is really low and I don't want to put my body through cycle after cycle of SO. (He said it takes, on average 4-6 cycles). That's interesting you are on hydroxy though...I have prednisolone. Keep me posted with how things go. Oh and my husband did the dna too and it came back as normal so the problem really is with me!

@VenusStarr just wanted to wish you all the best - honestly I've never wanted someone I don't know to have something so much! I've read so many of your posts over the years during my infertility journey and I really don't know how you've gotten through it all. I hope this is it for you, I just wanted to wish you all the luck xx

@Zest11 oh we really are in the same position! Do you know what % your activity was at? Will you be having intralipids too? I know what you mean about the AMH - mines dropped so much since it was last tested in May, I also sometimes wonder whether I should do another egg collection but I did two last year and I've got pretty bad ptsd from my experiences with IVF last year that I really just need a break from it this year (I did 4 pretty much back to back).

I'm on hydroxy probably because I've had the prednisolone before - does he normally give one or the other? or are you on both? He did say they have similar success rates but its so tough to stay hopeful and I also don't know if this is our actual reason for failed implantation. I was still pretty disheartened with the results as I was expecting them to be a lot worse so I don't know if this will work.

Sending love to all x

@star2022 oh no, since May, that's frightening. But I can understand needing a rest from ivf. We did 3 back to back transfers last year, it's exhausting. How old are you?
The plan is to include intralipid too, yes. But interestingly my results seemed to show I respond better to prednisolone rather than the intralipids. We shall see. I don't really understand my results. Something was around 1.3 and above 1 is "high" so not that bad. And something else was around 23% when it should be under 20% so again, not that high. What about yours? I think some people have pred and hydroxy from what I've read but >'m not sure!