Immune/NK cells pred thread #31

@Gizmo1983 I’m not taking anythjng other than pred yet as I’m still working out the details of my plan. Definitely harass the clinic- that’s an important bit for them to explain to you!!

@Pupsandturtles sorry to bother you do you take hydroxy on your plan? I’m a bit confused as mine says 2 different things so I don’t know whether to keep taking it constantly or do you stop taking it after a negative test and restart on cycle day 2. I’ve e mailed the clinic but had no response 🤦‍♀️

@Pupsandturtles thanks so much for this it was literally a gush of bright red blood then nothing else but been having cramps literally all day. I’m having a hsg soon as have always wondered if something structural going on I’m praying not.
I live 5 hours away from Epsom so on top of intralipids it’s going to cost about another £300 to fly down or £250 for the train on top of intralipids price 🤦‍♀️🤦‍♀️🤦‍♀️🤦‍♀️🤦‍♀️ hubby won’t let me drive all that way esp if having drip in case I feel funny on the way back. I’m I’m lucky enough to fall pregnant I’ll be there for them all but going every month for them to just try get pregnant is going to cost me £500 a month on top of the other meds 😢😢😢

@Gizmo1983 i got some bleeding from
them too- I read they can irritate the cervix 🙈 I start mine on day 18

@Pupsandturtles ive only just done my first round. I get the same pain every month when I ovulate so I start them 24 hours after that x when do you start yours ?
its weird this the 1st month ive done them and just had a red gush of blood this morning like if you cut your finger and been very achy ever since no idea what this is about 🤦‍♀️.

@Gizmo1983 ive heard of other people saying they aren’t able to get pregnant once on meds- they thought it was from starting progesterone too early. When do you start yours?

Hi @MotherOfShihTzus I’m so sorry for your loss did you have the pgt testing on your embryo as if you had that it should have ruled out anything chromosomal . I’ve heard so many people say they had the best quality upload embryo but when tested was chromosomally not viable. 😢
I think when you have a loss with Mr S they tend to add something new to your list of meds till just to try that bit extra. I’m so sorry I know nothing more than that.
strange one for me this morning went to the loo and fresh red blood only I’m only 10dpo bit achey since it’s happened no idea what that is wonder if it is linked to the meds but no idea 🤦‍♀️🤦‍♀️🤦‍♀️my periods are always 28 days so who the heck knows

Hello all, I recently had IVF plus Shehata's protocol trying to conceive number 2. Was on; metformin, hydroxy, intralipids and humira. I had an early loss at 5 weeks; the nurse geri suggested I may go on to prednisone; I wondered peoples thoughts on why, will all that suppression already and a top quality embryo that implanted, would it more likely be chromosomal issues, or could I need more suppression? Think I'm conscious that this protocol minus humira, worked on my son - and don't want to to too much in terms of suppression. Might it be that the environment was good, it was just the embryo? Or should I consider the additional prednisone? Any thoughts/ experiences appreciated!

@Pupsandturtles sorry I forgot to answer your questions I think since you stop the meds at 10dpo ( or the meds I’m on) then it goes in a cycle by cycle basis but that is a really good question xxx

@Pupsandturtles thank you so much yes it was rubbish it was 8 months ago now so not quite as painful as it was then but still awful and I just can’t get pregnant again which makes things so much worse. I’m hoping so much Mr S’s treatment can help me xxx

@Gizmo1983 oh I am so sorry. That must have been absolutely devastating.

@Pupsandturtles i may be wrong but I believe some think that a certain amount of inflammation needs to be present in the uterus to allow implantation and it’s thought the combo of drugs may mean that is not present. Also I’ve heard that progesterone (cyclogest) makes the uterus more selective at implantation again I may be wrong there will be others who know more.
we had the autopsy results back and they came back as healthy and they could find no reason for what happened all her parts measured 14 weeks. This does fit in with mr Ss theory of the Nk cells affecting the placenta 😢

@KMG7385 @KtAgs @Lily1990 @Sophi81 @NessyT91 @MotherOfShihTzus Thank you so much for your replies, it's really helped! Will have a think...I can see myself doing the Nuchal scan (sounds lovely!) and not Harmony but that might change. Anyway, one day at a time, got to get there first! Thank you again 🙏🤞💗

Hi @Pupsandturtles yes I found out I have latent TB because I did the TB Gold test with Dr S and it was positive. I then went for a chest x ray which was clear so the TB doctor diagnosed me with latent TB, and advised that I need to get treatment alongside the Humira, which has serious side effects 🤦🏻‍♀️

As for Humira raising TNF alpha levels, if you go to fertility friends it’s got of stories from those who have had their levels raised after Humira. It’s something I’m planning to discuss with Dr S because I’m not willing to go through these risks only for my levels to be raised! X

Thanks for the info @Gizmo1983. has the Dr explained why the treatment seems to be impacting your ability to get pregnant?

and can anyone tell me how long it took to get their immunes under control with treatment? I’m guessing you have to retest them every so often? I really have no idea if it a 2 week process or 6 months…….

@Pupsandturtles thank u so much for your kind words. The complex plan is hydroxychlorine prednisone intralipids omeprazole and cyclogest. I’m a bit worried as like a lot of ladies I’ve read on here used to fall pregnant really easily and now it’s been 8 months and jut nothing I’ve had 4 rounds letrozole and definitely ovulate but I know the tests are going to be negative and they always are. I’m dreading travelling down for Intralipids am going to look at flights today as that may be the quickest way for me 🤦‍♀️

Wow there are so many of you who had babies in 2021 - same as me 😬 @MotherOfShihTzus @KtAgs @NessyT91

@Lily1990 I agree both prof shehata and dr edge were really nice at my appointments and made me feel at ease! Nor did I feel rushed at any of my appointments! Congratulations to you too and good luck with your next scan xx

@MotherOfShihTzus wow you travelled 6-8 hours??? Where were you coming from if you don't mind me asking? That must have been really hard and tough for you!!! I was travelling about an hour maybe an hour and a half if there was traffic and I thought that was bad!! Especially when you have intralips you end up being there for hours by the time I got home it was like 5 or 6 hrs in total which was tiring enough so you must be shattered 😬

@Deerdancer34 I really wish I could say something to make you feel otherwise but unfortunately you will feel this right till the end. But the positive is once you have your beautiful children you won't even think back to this as you will just cherish every moment with them. I was exactly like that too, never excited about my bfp but i did used to feel really down and low about everyone else enjoying and celebrating their pregnancies. I actually never even told anyone I was pregnant including my mum until the baby was born!! Everyone was in shock as no one was expecting that. But to be honest once the baby is here that's not even going to bother you until you decide to try for another baby😬. Plus, life after a baby is defo hard too! No one prepares you for the before or afters! Both are a shock to the system emotionally, physically and mentally 😬. I would love to have one more but I don't want to go through this again. And that is also a shame that we have to make a decision like this even though I'm not happy about it 😩. I have my fingers crossed for you and will be thinking of you. Sending you lots of luck xx

As for scans - as the others have said due to anxiety I took all the tests offered too! The nuchal test is good as they spend an hour or so going through so much detail on the scan. The harmony test was done on me 3 times in my first pregnancy bcos it kept coming back inconclusive so in the end they just refunded the money back to me. I was sceptical doing it again in my second pregnancy for this reason but it worked this time which was a surprise. Neither are compulsory to take with dr s as you will get offered the nuchal scan with NHS but it's not as thorough but it's free 😬. Dr s will offer it but I didn't feel forced into doing it, I just did it to rest my mind!

@Gizmo1983 im so sorry to hear you went through that, you poor thing. What is the complex plan?

I’m also jumping back on this thread to ask if anyone has done EMMA/ALICE and found it useful?

@Newbeginnings22023 sorry to hear about latent TB- did they diagnose it because of the HUmira? I also didn’t know Humira can raise TNf!! Do you know how often than happens?

Hi guys I’d love to join if that’s ok, I’ve been reading through all the old press threads and still going. I’ve just had our results from Mr Shehatas clinic all has come back ok apart from having natural killer cells and ive been put on the complex plan. Ill be 41 in July and had a blighted ovum in December 2022 then a 15 week loss in June 2023 been trying ever since and just can not get pregnant again. We go tomorrow to get the baby’s autopsy result can you believe they’ve made us wait 8 months the only thing g they would tell us in advance was there was nothing genetically wrong. I’m waiting to go for a hysteroscopy I’d rather just pay private ans went for private consult but she insisted her nhs machine was better so waiting to hear. I’m in NE England so no idea how I’m going to get down for the lipids every month 🤦‍♀️🤦‍♀️🤦‍♀️. I’m so sorry you are here but it’s been such a comfort to be with people who know what it’s like xxx

It is wonderful to see all these success stories! I'm 14 weeks tomorrow (I hope) which is the furthest I've ever got after 5 losses. Still feeling very anxious but the stories give me hope!

@Deerdancer34 I echo what the others have said about the scans, they are really great at CRP, despite the expense. They are so supportive and the scans are more detailed and a much more positive experience than with the NHS. Dr Edge and Shehata both have a great bedside manner during the scans and they make the effort to show you the baby in detail and give you a memory stick with the photos etc. I didn't find them too pushy about the harmony test and nuchal scan, Dr Edge explained that it's recommended to have at least one of these (and the nuchal scan is cheaper). BUT if you have an NHS Fetal Medicine Centre for your 12 week scan (which I did as at King's) they will do the detailed nuchal scan there, and give the harmony test if there's any abnormalities detected in the scan. So I didn't get the harmony test or the nuchal scan at CRP, and Dr Edge and Shehata were fine with it. I think it's quite rare to have a detailed nuchal scan on the NHS though.

My last scan with CRP was at 11 weeks (as I'm doing odd weeks due to intralipid timing) and my next will be 15 weeks and then 20 I think (assuming I get that far!). Good luck to you :)

Hi @Deerdancer34 I'm not going to be of much help I am afraid as I have been incredibly fortunate and been able to see him through his NHS clinic so it's a bit different. The NHS clinic offered me two early scan but as they are so far away my local EPU agreed to monitor me instead. I've had my 12 week scan and am slowly weaning off my meds and have a maternal medicine appointment with him around 17 weeks x

Hi there, it’s so lovely to see so many positive stories :) thanks for sharing.

This might be a long shot but I was wondering whether anyone had Humira with a latent TB diagnosis? I’ve been given a plan of taking antibiotics for 3 months to treat the TB alongside the Humira. I’m worried about the side effects of both, especially with the risk that Humira may raise the TNF alpha levels, contrary to what we/I want?

Would be great to hear experiences from those who had Humira. Many thanks xx

Hi @Deerdancer34
For my daughter back in 2021 I went for all the scans. I found it really helped my anxiety until I could feel consistent movement. My impression from CRP is that it’s an “all in” sort of approach, as in they expect you to follow their plan and scan schedule to the letter. I did feel at times like they were trying to get the maximum amount of money as possible out of us… however their treatment is the reason I have my little girl so I can’t complain!

This time around I had a scan with my clinic here in Ireland at 6-7 weeks, then had my GP refer me to the EPU at our local hospital for a scan at 9 weeks for reassurance. I felt a lot more confident in the pregnancy this time around, and my losses have all been early (around the 6 week mark) so once I got the first scan over I felt I could relax a lot more.

If you would rather go with the NHS for the scans I don’t see in there being any harm at least asking CRP and seeing what they come back to you with? The harmony test wasn’t suggested to me back in 2021 so I never did that.