TTC or pregnancy on prednisolone or similar part 12

[teamdozie]

This is a positive thread for all those diagnosed with High or Very High NK Cells and looking to start TTC or already pregnant on Prednisolone and/or Intralipid treatment.

Newcomers very much welcome!

Tum congratulations on the great scan news, and not long to go till the next one! Long before going on Mr S's protocol I also tested negative for all thrombophilias but was told at the time that new ones emerge from time to time (and was put on aspirin just to be on the safe side, for that reason) so perhaps clexane can't hurt.

Brown, quick question: where do you buy your DHEA? Sorry if you've already posted on this way back. And where would you get the blood test done? At the GP? Not sure if I'm going to go down this road but better prepared than not...

Team meant to say thanks and how are you doing now?

Luna it's wonderful that you are exploring all options. You and your DH sound like a good team!

Tum I had clexane (tested negative for thrombophilias) with my only successful pregnancy (under Prof Brosens who works with Prof Quenby now) in conjunction with progesterone. DD now 5 years old.

I'm lurking occasionally, still TTC and now under Prof Quenby rather than Mr S. This is such an amazing group of women, truly inspirational. Waves to everyone.

tum I was on clexane from first scan at 5+4 to 12 weeks and I have no clotting issues. It's thought to be cytoprotective for developing placental cells. It's part of Prof Q's protocol.

Hideous couple of days for me with what turns out to be a norovirus-type bug. At first I thought it was the result of coming off pred too quickly last time, but my doc said no. I think I've been working too much and am run down; only 4 days off in 5 weeks, including Christmas and New Year.
Tum, congrats on the scan. I tested negative but was advised to have clexane by Serum who thought it was indicated because l-arginine makes my periods heavier, showing there must be a blood flow problem. Mr S said he didn't think I need it but he would prescribe it if it made me happier. But I haven't taken him up on that because of the expense and hassle.
*Village', I get my DHEA from Vitasunn. They do several different strengths and types. I'm on the 10mg vegetarian ones. I've just ordered my melatonin from them too. I got my DHEA levels tested by Verisana, a German company. That was a saliva test. And with the 3-month thing with melatonin, I think it's because, like DHEA, it's been shown to be safe with short-term use but there haven't been many studies looking at it in the longer term.
Also, Luna, here is list of interactions with melatonin.
umm.edu/health/medical/altmed/supplement-interaction/possible-interactions-with-melatonin
You could presumably use this site to look up other drug and supplement interactions. Serum also told me that melatonin can interact with steroids as melatonin is part of the system regulating immune response, and that if anyone on this combination were to have any sign of a negative immune response, like a rash, they would advise discontinuing melatonin.

Hi everyone!

Sorry if I don't say persona hi's to a everyone!
Just a quick update! Had a follow up this morning at the EPAU and all was looking great at 7 weeks!

Went to work and got home at 3.30. Felt wet so when I checked low and behold I'm bleeding again! Contacted Louise and went down to see Dr S (two scans in one day)!!
So he discovered a hematoma above the sack and it's pushing down on it! So this week is touch and go!

It never rains but it poors! And like I said to DH today! Everything can change in the blink of an eye!!

Hello to everyone! And "Tum" congrats and the brilliant news on the scan!

"Village" hope all goes well tomorrow!

Xxx

Oh bloody hell Team just when you start to relax into things. I hope you are putting yourself on serious bed rest!! An crossing EVERYTHING for you!!!

Thanks for the link Brown

Question to everyone apologies beforehand if TMI. I seem to have started my cycle which is bizarre considering that I only had the ERPC two ago tomorrow. I started taking L'Arginine again three days ago and CO-Q10 yesterday and I'm not sure if that's potentially the reason for the bleeding. All very strange and thought someone might have had a similar experience.

Meant to say that ERPC was two weeks ago. Missed that bit in the above post

Evening, may I join you all?
I have been researching NK cells as an old gp but now Chinese medicine guy I saw recently said he 99% thought I had this and to get checked, I asked gp, gynaecologist both about it and they swept over saying not enough research. I really think they are wrong.
I have a dd aged 5 with previous husband and she was small for dates and bled 9 months and no one ever new why just prepared me for worst throughout pregnancy but she was my miracle baby. I took 3 years getting pregnant.
Since with new partner and been ttc 2 and 1/2 years and 4 mc usually around 7 weeks for all, 2 gynaecologist's one nhs one private both said just bad luck keep trying!
Last visit to the gynaecologist was last week.
Since I feel irritated and have emailed Bourn hall clinic to see if they can do the tests for nk cells privately but not heard back yet.
Just unsure what to do or where to go next?
Did any of you have to fight to get these tests and how can I go about getting them done?
The Chinese medicine guy said ask gp for private referral for immune suppressant injection but when I google comes up with nk cells and steroids.
So confused about it all .
X

Brown sorry you're run down, try take it easy I know easier said than done!
Team how awful for you, rest up
Tum great news!
Waves to all x

Welcome Dildoos and sorry that you've had such a struggle. You've definitely come to the right place here though, and there are a number of options and directions you can pursue.

1. I along with a number of women on here are under the care of Mr Hassan Shehata. He runs the Miscarriage Clinic based in Epsom (with a practice in Harley St). They have a very good website. It's private and you can self refer so no need to go through GP. If you have medical cover such as Bupa they may cover some of the tests so worth checking out.
2. Professor Quinby based in Coventry hospital is also a specialist in NK Cells and her methods of testing and treatment differ slightly to Mr Shehata. She's cheaper though with test about £350. Also worth investigating.
3. I haven't used either Zita West or Dr Gorgy (both with clinics based in London) but others have with success. I'm sure some of the other ladies can give you details

You will find that it can be info overload at times but there are lots of options open to you. Good luck and keep us all posted xx

Village good luck today with your procedure. Hope it all goes smoothly

Brown and Team how are you both doing today?

Waves to everyone else xx

Team I'm sorry it's such a roller coaster. I had a subchorionic haematoma at my 8 week scan and was advised to take ir very easy, it resolved itself ok. I have everything crossed for you. Hang in there little bean!

Hi dildoos Your losses sound quite similar to mine. I had my Ds1 no problem then had a v traumatic MC at 10 weeks, which I think is where my problem started. With Ds2 I had a lot of bleeding and he was small for dates, then 3 consecutive MC at 8-9 weeks. I self-referred to Prof Quenby in Coventry, was diagnosed with high NK cells on a uterine biopsy, treated with steroids, progesterone and heparin, all prescribed no bother by my GP on her say-so, monitored at the local RMC clinic and I'm 21 weeks pregnant. Some of the London Drs use IVIG (intravenous immunoglobulin) and intralipids ( soya based product given intravenously) as well as a lot of immune modulating supplements etc.
I chose Prof Q because it's so straightforward (and so is she) you go once, when you are 7-10 days post ov and def not pregnant. She does a consultation, scan, biopsy and uterine scratch at the same appointment and you get a telephone consult and a treatment recommendation about a month later. It cost me £350, someone who looked into it more recently said £400, but there shouldn't be costs on top of that. Even if you need private prescriptions for the treatments she recommends none of them are expensive. My impression is the London doctors do more comprehensive testing ( though on blood not a biopsy) and use many more treatments, which is a much bigger commitment in terms of money and travel time.

Hi Teams so sorry to read about your haematoma but as Baking said, alot of the time these re-absorb or bleed out. Have you been prescribed bed rest?

I'd take one or two weeks off and spend some time on the sofa catching up on daytime if you can. Also avoid lifting anything heavy. Did Mr S give you any indication of the size? That way when you next scan you can see that its hopefully getting smaller.

Everything seems ok-ish for me, but I have twinging on my right side, feels ligamenty and hurts if I laugh or cough etc. I am hoping its just "growing pains". We shall see at my next scan. (Tuesday).

Team hope you're managing to take it easy!

Tumtimes it does sound like growing pains but it's great that you'll have the reassurance of another scan so soon.

dildoos welcome, I have a similar history to yours too: DS followed by 2 mcs around 7-8 weeks, DD then another 2 mcs again at 7-8 weeks. I was always told the mcs were down to bad luck and to keep trying. Suspected that something else was wrong as we typically saw a good heartbeat each time which then inexplicably stopped; self-referred to Mr Shehata who was the first person ever to tell me that 4 mcs suggested an underlying pathology. Have since been diagnosed with high NK cells and am ttc following his protocol. Hope you get the answers you need soon; you certainly have nothing to lose.

Luna hi!

Brown thanks so much for the info!

Turns out appointment today was just to assess the cyst - there was a chance that it might have burst on its own, but it has in fact grown and will now have to be drained next week, probably under sedation. Glad something proactive is being done about it and am feeling optimistic about the next stages.

Waves to all.

Team - what a rollercoaster you are on at the moment. As others have said, try to keep positive that this little haematoma can sort themselves out. It is so hard in these early weeks. I hope you manage to get plenty of rest over the next few days.

Village - I hope that the draining of the cyst goes well today.

MrsPixie - your teenage clinic scan trip made me smile, great news on the scan.

Tums - great news about this weeks scan. Regarding the clexane, I am on it despite normal thrombosis tests being fine, however I had the TEG test at St Mary's and that indicated a clotting issue during pregnancy only. So I am on the heparin injections too. I am not doing too badly with the bruising, how are you doing?

Luna - with a miscarriage the bleeding can be stop/start, but I would have thought that with the ERPC that bleeding again after two weeks, might be worth checking out?

dildoos - hi! Have you done all the routine recurrent miscarriage tests through your hospital yet? Luna has given you the details of private clinics to contact regarding NKCell testing. I haven't had the tests, but managed to persuade my consultant to prescribe the prednisolone on the basis of an ANA+ test.

I have my first scan on Monday, now I am 7 weeks. I swing from pessimism to optimism in seconds, and am trying not to think about it.

village - sorry x-post, good to hear you are feeling optimistic about it, and that it is being dealt with pro-actively.

Hey willitbe so far so good on the bruising front. When did you start on the clexane?
I havent had the TEGS test yet as I got preggo before my St Mary's appointment so I am glad I have the clexane just in case.

Hi everyone!

Luna my words exactly "bloody" (pardon the pun) hell!!! lol!
Re your bleeding I would maybe call Louise and have a chat! I've never experienced that! How are you feeling otherwise? It's good to hear you are giving Dr S another go! We always said two attempts! And I completely understand how you can't go through the whole 17/20 mc! Not sure where my threshold is!

Dildoos welcome to the thread! All the ladies in here are brilliant and equipped with all the necessary info! But I think Luna had given a pretty good description of the doctors that are treating NK cells. Good luck with it all!

Village that's crap that they didn't do it today! Hopefully next week could be under local j stead of general?!!

Willit hope all goes well at the scan in Monday! And you aren't struggling with the heparin! My belly is looking less like a bruised peach and more like a pin cushion! (I can see the the little holes) lol!!!

Baking 21 weeks!! So exciting!!

As for me I'm on bed rest! Dr S is always very realistic and e said he has seen bigger ones that have resolved themselves but he has also seen smaller ones that have caused a MC! He didn't really say how big it was but it looked like it was squashing the sack!! The bleeding has gone to brown today! But he said he doesn't like brown! He prefers it when the bleeding is fresh! I'm on triple dose of cyclogest! So 1200mg!! And have cut down to one injection of clexane a day until we see him in Wednesday! I'm keeping everything crossed as baby is measuring spot on! But things chane at the blink of an eye! If it's not the killer cells it's a stupid heamatoma that will get me!!

Enough about me! Waves to everyone and thatnk you for your constant support!! Xxx

Hahaha Team I honestly didn't think about what I typed. Hope it made you smile . You have a great attitude - at least from what I am reading, and you are doing EVERYTHING that you physically can to try and ensure the best outcome for you and your little 'bean'. Know that we are all here and hoping for the best and I wish you a calm, bed bound weekend with and xxx

Team if you don't mind me asking, why does Mr S prefer it if the bleeding is fresh?

Wow I have found you ladies, giving me good info and very similar problems, congrats to all pregnant it's music to my ears

I have had tests on nhs, scans, ovulation tests, sperm analysis ( low but not concerned said gp as falling preg) and now awaiting the chromosome tests back, they wouldn't do the nk tests which were the ones I hoped for however we have saved for 3 courses of Ivf thinking this may be what was required?! So money can be spent on nk tests! I Am in norfolk thinking any of the pre mentioned consultants are just as easy to get too I like the thought of going to conventry as seems like I may just need 1 visit? Or is that the same for London based clinics?
What sort of discomfort was the uterine scrape?
Many thank you'd for the lovely welcomes, I look forward to now settling in and reading back through your thread
With the af arriving today this has given me a new lease of I will get sortedxx

Team - just read about your blood above sac, I had this when pregnant it dispersed on its own I bled all the way through, I have a beautiful daughter. ( little monster just liked to worry me ) I rested with legs raised so good blood flow to embryo and I didn't lift my arms as to not stretch anything ( advise from a retired midwife)
Thinking of you and have everything crossed that all will settle.
Take care

I wanted to keep you updated- I have emailed dr Quenby for my first port of call in my quest to get tested x

Great news Dildoos re Prof Quenby. I had her procedure which is basically similar to a smear and not too traumatic. Got the results after about three weeks and the meds programme was simple to follow.

Update on me - I managed to speak to the consultant that preformed the ERPC, regarding the bleeding and although rare, some women can bleed afterwards as 'leftovers' (as he put it) can sometimes remain. What joy as I seem to be in this category. I honestly have menstral symptoms though such as spots, sore breasts and obviously bleeding so will be interesting to see what happens in 28 days. In the meantime was told to keep an eye on things whatever that means.
Wishing us all a calm and stress free weekend xx

Luna- as if you need bleeding after this trauma?! I hope it settles soon for you. Do you take different medications at different times of your cycle?
I hope you rest lots, treat yourself to something relaxing, nice baths, bubbles in a glass and in bath , soothing music so you can clear your mind a little.
Have a wonderful weekend