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

999 replies

Seekingmiracles · 13/05/2016 20:48

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

OP posts:
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billy15 · 07/07/2016 21:14

Hi karry I'm so sorry to hear this! Louise always told me that many women - especially with immune probs - have spotting in healthy pregnancies. She also said to double the cyclogest (400 in morn and 400 before bed) so might be worth doing that. I would also use the back passage as not so leaky and also won't irritate. The one prob with the cyclogest tho is that some say it can delay a mc. Fingers crossed the spotting stops and it's just baby snuggling in!

Hello to everyone else. Sorry I've been quiet - still think of you all.

Things are fine with me- have my app next week with dr s to get results of the last mc. The op was fine and no side effects, but currently having a 11 day period! Think we're gona try again but maybe this month is a right-off!

Xx

Snoopysimaginaryfriend · 07/07/2016 23:02

karryk fingers crossed everything is ok. I'm sure your cousin will understand if you're not able to attend, you have to take care of yourself.

Hi billy, good to see you again. Hope your period ends soon and glad to hear it all went well. The cycle after a mc was always a right off for me too. It always upset me but I guess it's the body healing

karryk · 08/07/2016 08:22

Hello Billy - lovely to hear from you Flowers and Snoopy x

No bleeding overnight, just a pale brownish discharge on wiping so far. I used the bum route for the cyclogest last night. Got a little bit of backache but that's about it. Will call the clinic later for advice.

I've explained to my cousin's sister (is a surprise shower being organised by her) about my situation so that's a relief. If things don't work out I won't have to worry about going.

Had a little cry last nighty and dh did a good job of cheering me up. Onwards and upwards xx

Seekingmiracles · 08/07/2016 10:53

Hi Billy , glad your op went well. Hope the results bring you some answers. I think sometimes having a little break after a mc is good for your mentality. DrS told me when I went for my results after my last mc, to wait another month to let me body heal. But it probably did my mind the world of good too.

Glad the bleed seems to have tailed off Karry. Could you call your local erpc and see if you can get in earlier there?

OP posts:
bubaki76 · 08/07/2016 14:13

Hi Billy, good to hear from you again. I am sorry your period is so bonkers, they always seem to be all over the place after a mc.... hope you get some answers from the results and your next consultation, let us know how you get on.

Karryk, good news it's light brownish and that it's tailed off- could be old blood from implantation? How many weeks are you now hon?

CarryOn, PM me a description of your FB profile and the name you use so that I add you as a friend which will enable me to add you to the group- you can always un-friend me later, will not be offended! Wink

The same applies for any lady which feels that they may benefit from the FB group, it's a group of lovely ladies who are all going through the same process as the rest of us, ie dealing with RMC, ongoing early stages of pg for some, testing for other- huge amount of support and information there, which has personally helped me enormously. And it's a completely private closed group- you could always make up a FB profile just for the purposes of this if you want to retain complete anonymity (I didn't bother really but some ladies have)

xx

karryk · 08/07/2016 21:21

Haven't had any spotting today...quite relieved but still anxious... spoke to the clinic and they advised that if it comes back to stop the aspirin and double up the cyclogest. I know now why you ladies call them bum bullets!

Bubaki76, I'm 5w5d today Smile

Another early night. Wishing everyone a lovely weekend x

CarryOn2016 · 12/07/2016 14:08

hello again
hope you are all doing well and enjoying the warm weather.
I found out that I have high NK cells and need to take pred and if BFP then 2 cycles of intralipids.
May I ask if:

  1. anybody had steroids and not the intralipids with high NK cells please?
  2. I am not keen to take pred long term, so might consider super ovulation with IUI. Has anyone tried this and how long did it take to get pregnant?
  3. Anyone tried sheffield care fertility? The prob is I live v far from Epsom and it's such a hassle to go to see Dr S. Sorry for all the questions. Thanks
fourleafclover82 · 12/07/2016 17:45

Hi Carryon2016.

I was diagnosed as just into high NK cell category by dr S in Epsom. Because I just fell into the high category and was 4 weeks pregnant when I got tests done he made me follow the high NK treatment plan but without there intralipids. I was worried about taking the steroids but it's actually been ok. You are on them for a very short time and they prescribe them during pregnancy if you have immune issues such as asthma/ bald morning sickness so it's not like it's unheard of to be on them. It helped to think that it was really just a few months that you are on them for.

I also managed to get my Gp to prescribe the treatment plan after the initial diagnosis from dr S. THis helped a lot with not having to make the expensive trip to Epsom and pay for consultation fees and pills.

Xxx

CarryOn2016 · 13/07/2016 21:05

Thank you fourleafclover,
I guess my worry is how long it takes to get pregnant but good to hear some positive news. I have changed GP now so will see what this is like, fingers crossed. Will start next month! xx

billy15 · 14/07/2016 10:50

Hi ladies
CarryOn I've been taking pred for a while on and off and not been too bad. At first I felt a bit jittery but think your body adjusts to it. Was on it for over 2 months my last mc and didnt have any side effects. I also hated the idea of taking meds but my advice is to just take what is advised otherwise if you have another mc you will always wonder if its because of the meds and then you stuck in a bit of a vicious cycle. I'd also recommend pre-ovulation intralipids if youve been having repeat chemicals - but Im sure Dr S would recommend this if he thought was best.
I've not thought about having IUI with SO before and I had an app with Dr S yesterday - I meant to ask him about it but forgot!! But if you find any info on this I'd be interested to know.

Karryk how are things with you? Did the spotting stop? I hopes all's well.

I had my app with Dr S yesterday and my last mc was due to chromosome so he said to continue with the same programme - he also said his protocol is 2xhydroxy / day now for any ladies taking Hydroxy.
So I think we're back on the crazy merry-go-round next cycle! Feeling more positive atm!

I hope everyone is doing OK xxx

billy15 · 14/07/2016 10:51

...also how did you ladies get your GP to prescribe the meds? My GP said they'd need to see a letter from the clinic listing the meds I take, but I feel awkward about asking Dr S for this!!

Drttc · 14/07/2016 12:36

Hey Billy,

I never had a GP willing to prescribe the meds but Dr S usually emails a letter (takes a while to come through) with the summary of your meeting including the protocol decided- so can you show your GP that? Maybe ask Louise if you could have that protocol letter for your records?

fourleafclover82 · 14/07/2016 13:15

I just showed my Gp the summary letter from dr S where it stated I us high NK cells and would follow the high NK treatment protocol. I took along a copy of the protocol which details what drugs to take and until which date. X

karryk · 14/07/2016 14:42

Hello Billy :)

I'm okay, thanks Flowers the spotting disappeared so hopefully that's the end of that. I did go up to x2 cyclogest and quit the aspirin until after the scan on Monday.

My boss (who I've had to tell for practical reasons) keeps saying 'oh you must be so excited' and I feel like a damp squib having to say 'no, not really!'. I'm sure I won't sleep the night before. Having flashbacks to the last mmc and the news. Argh! I know there's nothing I can do but stay on the meds but it drives you crazy! Confused

Oh well....watch this space! Fingers and toes crossed :)

X

See33 · 14/07/2016 20:23

Hi
Billy - glad you feel you got some comfort from finding out it was chromosomal and you can carry on with Dr S plan again. Back on TTC

Karryk- glad the spotting stopped. What a relief

Tumtimes1 · 14/07/2016 20:38

Hi guys - not been on for a while as have started mat leave and so not on the net so much. I have read through the updates.
Billy I have to say I'm relieved it was a chromosome issue as awful as it is either way but this does mean that it's well worth continuing on the protocol originally prescribed. Sendin you strength x

Karryk it's awful to spot I know how it feels but thankfully now this has subsided you know that you are firmly pregnant still and I have my fingers crossed for your first scan.

Hi Drttc not long to go now for you!
Hey snoopy hope you're well and it's great to read your updates.

Hi to everyone else!

All ok so far with me - I'm coming up to 30 weeks now and had a Doppler scan at Kings last week to test blood flow. It took ages but they seemed happy in the end. As ever my heart beat was through the roof with worry and my face went all blotchy. I also had an appointment with my consultant and all my worry about them taking me off the clexane injections (which I firmly believe are supporting the pregnancy) was unnecessary. My consultant was clear that I stay on them until 38 weeks and then come off 72 hours before my elected c section. I had done buckets of research and had a 36 page document about clexane, MTHFR gene and pregnancy. I didn't need to even show him it was a given I would stay on the injections. Phew.

CarryOn2016 · 14/07/2016 20:59

Hello billy15
thanks for the advice re: meds.If I do find anything about SO and IUI I will let you know. I did email fertility care sheffield but never heard back and successful rates.
I have just swapped GPs so will see how it goes.
karryk - take good care & fingers crossed

karryk · 14/07/2016 21:17

Thanks all. Annoyingly the light brown 'gunk' as I call it has just made a reappearance Hmm

Insert a bit long scream here!

Meh! Sad x

Seekingmiracles · 14/07/2016 23:17

Hi ladies 

Billy - as sad as any loss is, a chromosomal loss is probably the best you could have hoped for. I know I took relief in it with mine last year. At least you know the protocol works and is worth continuing with. Good luck lovely, stay strong and positive that it will work out for you.

Karry - sorry you have more brown sludge. Hopefully and fingers crossed its nothing. When is your scan? Bet you can't wait! As for your boss - I politely told mine and any friends who I'd told about the pregnancy that I didn't want any excitement until I felt more comfortable with the stability of the pregnancy. Put paid to all those comments which quite frankly pissed me off. Very easy for them to be excited when they've not had the heartache we have. Stay strong Hun.

Tum- wow you're on Mat leave already! So jealous!! I've still got 10 weeks!! Glad your consultant is on the same page regarding your clexane. I have a feeling I'm going to have the same worry/battle with mine. I might get in contact with DrS and see if he can email my consultant with his opinion.

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KittensandKnitting · 16/07/2016 17:41

Flowers for those struggling, I am having quite a few wobbles at the moment so haven't read back through the entire thread.

I came accross the costs associated with Mr S on the website and so popped in to share the link www.miscarriageclinic.co.uk/aboutus

Sorry you are all having issues with your GP's, mine is so supportive she has been an absolutely rock.

Also have taken pred for asthma in the past, think I saw question about it? just be careful not to suddenly stop it depending on dose as it can be dangerous to do so, It can make you "hairy" and make you gain weight thankfully I have never had that issue! It makes my skin glow, nails grow super quick and seems to firm up everything :)

I'm asking to see if my GP will prescribe this for me as a precautionary measure!

karryk · 17/07/2016 08:39

Thanks Seeking :) the scan is tomorrow afternoon Shock

Take care of yourself kittens Flowers x

My main prednisolone symptoms are a thudding heart (comes and goes) and wonderful steroid acne..I've never used so much concealor in all my life! Grin

X

Snoopysimaginaryfriend · 17/07/2016 20:36

karryk good luck, I'll be thinking of you tomorrow x

billy I know it's no consolation but at least Knowing it was a chromosomal problem shows that the treatment works for you in terms of maintaining a pregnancy?

Seekingmiracles · 18/07/2016 10:59

Thinking of you today Karry, hope al is well with little bean and it gives you some relief, if only for a little while

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PJ12 · 18/07/2016 15:13

Hi everyone.

I am currently going through my 3rd consecutive m/c and found this thread by googling Dr S. I have a 2 yr old DD that we conceived on our 2nd try and it was a text book pregnancy. When she was 1 we decided to try for another one. I got pregnant straight away, started spotting at 7 weeks and miscarried at 8. I then got pregnant again a couple of months later, again started spotting at 7 weeks, but had a scan at th hospital that showed a healthy heartbeat. Spotting continued, a week later I had a bleed and miscarried again. My GP told me that it was just bad luck and to try again. We did, again I got pregnant straight away but started spotting at 6 weeks and have just miscarried a couple of days ago. My GP is referring me to a Recurrant miscarriage clinic and I am just waiting for my appointment date to come through. Apparently the wait is quite long and as I'm 37 I think we are going to go the private route whilst we wait as time is not on our side and I just can't bear the thought of another miscarriage.
Can any of you ladies explain the different approaches of Dr S vs Coventry. Those are the 2 top searched that come up for me when googling recurrent miscarriage and Im just now sure where to start. I feel quite lost to be honest. Why and what made you decide to see Dr S?
I have no issues getting pregnant, each time I got pregnant on the 1st or 2nd try. I just can't seem to get past 8 weeks. I don't know what's changed between DD and now. Would Dr S be the right person to see about this?
Apologies for all the questions. I'm just feeling quite lost at the moment and I don't know where to start to get help.

xx

karryk · 18/07/2016 19:42

Sorry to hear of your losses pj12 SadFlowers I'm afraid I don't know much about the Coventry approach but there are some very knowledgeable ladies here who will no doubt be by soon to help you. Wishing you well xx

Thank you for your thoughts, Seeking and Snoopy....they worked. We saw (and heard) a heartbeat! Mr S was pleased with baby's size albeit it measured a few days behind. It's quite surreal...We've never got this far before Blush long long journey still to come but just for one or two nights I can sleep a bit easier Smile

I've been told to go back onto the aspirin now and drop the cyclogest back to one per day (hurrah). Next scan in 2 weeks. No doubt I'll be a bag of nerves again by then.

Xxx