Immune/Natural Killer Cell treatment for those ttc or pregnant. (AKA the 19th pred thread!)

[Seekingmiracles]

The new thread for anyone ttc or pregnant with immune issues or natural killer issues. Welcome ladies!

@pickledsausage thank you and I hope this works for all of us here too xx we can only look at the positive results and stay hopefully with the preds although I am getting side effects such as a dry mouth and insomnia!

Hi all- new to this thread, but going through a similar thing to lots of you all and as has already been said on here- it's nice not to feel so alone. Have seen mr Shehata and now waiting for ovulation to start 2nd round of steroids. In theat same waiting game

Recognise pickledsausage from another thread- really pleased everything is going well for you.

So sorry for you have been through loopy, but that's so good to hear that you are now exactly a healthy little girl xx

Ladies, I have just thought of a question I have that I have been wondering about and some of you may have ideas about it? next week I have an appointment at st Mary's RMC on the NHS- I couldn't wait that long when originally referred, so went privately to see mr shehata, which was a couple of months ago. Anyway, I think I will ovulate early next week and so should start the steroids, but two days later I have the appointment at st Mary's and worried about whether the steroids will affect any test results, so I am wondering whether to delay the steroids for two days? Just wondering what anyone else would do? My local obstetrician said I should still go to st Mary's as they'll scan me and may do some other tests as well so am definitely going to go, just not sure what to do about the steroids xx

Hi starshine glad you found the thread but so sorry for your losses. I'm not as far as you in the process so not sure re the steroids, but interested in the responses as I may be in a similar position - have my NHS rmc appt at the start of June (at my local hospital) and will hopefully have started treatment again. I'm definitely planning to go as spending all my savings on dr s and would be amazing if the NHS would cover at least some of it.

*by then, not again!

Hi starshine1,
Sorry for your loss.
I was in your situation 6 months back.i had nhs hormonal test,scan,vitamin d,ovarian reserve test.i was about tostart steroids for 1st month.my gp advised me not to take steroids before test,sometimes it can affect the results.so,i didnt take steroids for that month.my test results were normal.
Just as information,dr s told me to take steroids two days after positive ovulation test.

Hi ladies, just had a quick question, I've registered my pregnancy with the NHS and have my booking in appt next week. I'm quite nervous about how they'll react when i tell them about the medication I'm on from mr S...can anyone tell me how they got on please?

Pickled sausage, my midwife hadn't a clue about anything to do with NK cells and certainly had no opinion. My GP was supportive and happy to do any prescriptions, her sister also had similar issues. My hospital RMC consultant however was very nasty, phoned me up and went mad, telling me I what I was doing was dangerous and a risk to me and the baby and that they would never ever prescribe pred or aspirin etc, despite having never heard of Mr Shehata and his successes. I sent him a rather stroppy email afterwards as he really upset me. I now have a new consultant who is more accepting, I don't think she ageees with it but has the attitude of what's done is done and that's it's controversial treatment but that I'm not the first patient she has seen to follow that route. And ironically she thinks I should stay on aspirin until 37 weeks, not come off them at 20 weeks like Shehata's protocol says. And she works in the same hospital as my first consultant who was against aspirin!!

Pickled I'm not seeing Dr S but on similar drugs I found the nhs doctors supportive of my treatment plan. I think any docs looking at a history of rmc would find it hard to argue with giving any treatment a go..

Loopy that is so crap you got such a response from your consultant. The aspirin comment is especially odd it's really common to be prescribed aspirin/clexsne in pregnancy.

Thanks for sharing your experiences!

@loopy I'm glad you complained about your consultant!! How can someone in that field not heard of Mr Shehata?!

So hopefully nothing to worry about then, I'll just take a copy of my treatment plan to them to keep on file for ref.

I had similar reactions to loopy - my consultant was against pred and the idea of nk cells. I just said 'we'll tuisnis the furthest I've ever got with a pregnancy so it must be doing something'. She shut up. Just be assertive, we all know that it's controversial treatment but in the position we have found ourselves in, we're willing to try anything and clearly it works. Mr Shehata has such a fantastic track record.

Hello all. Finally got my results back. I have normal levels of NK cells but they are apparently quite aggressive, 27% where 20% is the normal limit. No idea whether this is extreme or not - can anyone shed any light? Mr S has recommended pred plus intralipids if I conceive. Haven't had AF yet since my MVA 31 days ago, though think I ovulated last week so maybe next week. I expected to feel relieved but actually feeling a bit down.

Harriet my results were similar, although my NK cell cytotoxicity assay (whatever the hell that is) was 47%. I had pred, progesterone and intralipids. It worked for me - 40+3 today.

Hi yomping I read your balanced advice needed thread and really sympathise with the feelings of uncertainty - your story and others on this thread had given me hope! Yes my score was 27% on the toxicity assay.

How many cycles did it take before you conceived? I'm scared of the pred side effects and would be so great to minimise time on it.

I conceived on second cycle, which is normal for me, but I have heard of lots of people taking longer than they are used to, to conceive on steroids.

Just to let you know, baby Elliott David Tearle was born on Saturday evening at 9:30, weighing 10.1lbs.

He was delivered by c-section in the end due to concerns over infection as my waters broke early, worries over his decreasing heartbeat and possible preeclampsia because of my increasing blood pressure - we went in for a quick check after my waters broke, and we never left, so I didn't even get to start at home and it was very far away from the scenario we wanted - but I am happy that it was the right decision in the circumstances. Also quite relieved to not have had to labour for long with such a big baby!

He is totally scrummy!

Ahhhh @yomping congratulations!!!! I'm so so pleased your baby is here safely!

Huge congratulations yomping- that's wonderful news xx

Congratulations yomping!!!! So glad your little boy is here safe and sound. Enjoy those newborn snuggles x

Congratulations Yomping! Wonderful news!

Congrats yomping!

Harriet I conceived first cycle of trying on the pred, which is normal for me, we've always conceived every time we have tried with the exception of 2 cycles where I took progesterone from 7dpo as per Coventry's advice...Prof B then thought it must be having a contraceptive effect so told me to take it in future from BFP, and then I fell pregnant again the next month, so for me steroids don't seem to have altered my fertility, and after 12 MC's I'm now 19+3 with that first pred attempt, it's an amazing drug in my opinion!

Loopy that's great news and good to know about the pred. I am on cycle 2 of using pred and last day of steroids today. Convinced I am not pregnant this month. Has anyone else found there normal literal phase symptoms less since starting the pred? Previously I have always had sore boobs and spent the last week of my cycle convinced I am pregnant, but on the pred that doesn't seem to be happening at all?

Hope everyone else on the steroids is getting on ok and we all have some luck soon!
And really hope you're feeling ok pickled sausage xx

congratualations loopy, enjoy those newborn snuggles.

Harriet - my cytoxicity results were 38% - so pretty agressive. Its understnadable you feel a bit down about it rather than relieved. When i got my results i spent about a week crying about it before realising i potentially had an answer. I was on pred and intralipids but had a mc with my fist bfp on the treatment (after 6 cycles), we don't know the reason for that mc but he added in hydroxy too. 3 months later i was pregnant again and had a little boy in jan 2016. I am now pregnant for the second time, it wasn't planned so had to take the pred retrospectively once i found out also had intralipids but no hydroxy this time. All seems to be ok so far - i'm now 21 weeks.

Pickled - i have been vey lucky in that my midwife, gp and consultant have all been very supportive of the treatment. Both my midwife and go had the attitude of if it means you get to have a baby then its worth trying. Hopsital consultant was actually very interested in the treatment plan and asked me lots of questions! I think if you do encounter negativity from them you just need to be strong ad say something like well this is the furthest ive ever got in pregnancy so it must be worth doing or something like that!

@harriet87 we conceived the 3rd cycle of using the pred, and had been trying for 12 months this time. Have you noticed many side effects yet?

Oh wow @loopy that's great you are now so far along!

Thanks @starshine1, I'm feeling good and strangely very calm at the moment - my second scan is this afternoon so by rights I should be a bag of nerves (i certainly was at the last one). So I'm either in denial or it may be a good sign.

@sunnyday01 you are so right, I will just be firm!! Thankfully midwife was absolutely lovely.

Scan all good!