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Conception

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TTC or pregnancy on prednisolone or similar part 13

996 replies

VillageMum · 25/04/2014 20:30

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!

OP posts:
sunnyday01 · 25/09/2014 07:12

I meat day 24 not day 10! It's day 10 of taking the pred!

sunnyday01 · 25/09/2014 06:25

Wow hopender Scotland us a bit of a trek! I think you can have the scan locally then he will assess the results for a fee which may be worth considering!! I'm not sure exactly how it works and why it's supposed to be quicker - maybe because you get more than one egg?!

I took my test today - bit naughty as it's only day 10 today but I'm impatient! It was negative - so guessing that's it for this month and will be doing the same process again next month! May test again over weekend just to be certain as it does feel early!

freelance I love hearing about people who have done out the otherwise of this treatment with babies - gives me so much hope.

freelancegirl · 24/09/2014 22:50

Sorry - too busy at the moment to keep up but just wanted to say a belated huge congratulations to Tum!!! I too remember reading about people having treatment and then having babies and it felt like such an impossibility that it would ever be me. For those who don't know, I started this thread initially, have had 5 miscarriages, one DS with Mr S and am now 25 weeks pregnant on his treatment again. Lovely to see so many newbies getting support here - without the treatment we wouldn't have had scores and scores of Pred Thread babies :)

Hopender · 24/09/2014 22:40

Thanks sunny. It is good to know what it would involve so that I can be prepared if it comes to that. I'd be coming from Scotland for the scan so total trek! I hope it happens naturally because everything is really adding up. Do you know if the super ovulation improves your chances for getting pregnant or if it is only if you don't ovulate each month? I do the OPKs and they always seem to come up but I just want it to happen as quickly as possible, like everyone I'm sure!

sunnyday01 · 24/09/2014 08:47

Hi hopender - its so difficult to know when to test isn't it, 10 days doesn't feel that long so keen to leave it longer but then don't want to be taking the pred longer than I need to!

Interesting what you say about your AMH levels as this was never discussed at my appointment, it was very much about the NK cells and the treatment, but I have just dug out my results and see that my level was 17 and also in the lower fertility bracket! The SO programme involves taking a drug called letrozole (well thats what I am on, he doesn't like clomid due to the side effects) on days 2-6 of your cycle and then around day 10-12 you have to see dr s for a scan to see how your ovaries have reacted. Ideally he is looking for 2-3 good sized follicles - this cycle I had 2 and he was quite happy. Then he prescribes a trigger shot and tells you when to inject it (in my case it was day 12) and then he also tells you when to DTD (dr's orders!!) and when to start the pred. It was all quite easy, although obviously extra money as they appointment for the scan was 210 plus the injection was 40. Also as my scan date fell on a thursday I had to go to Epsom which was a right trek from our home in Northamptonshire! On average it takeas 5-6 cycles for it to work I think. The reason we started on it straight away is I wanted the comfort that I was ovulating and something was happening, and I wasn't just taking the pred etc for nothing if that makes sense!

Ideally you have to wait for about 12 days after taking the trigger shot before testing as I think it can give a false positive or something like that!

Hopender · 23/09/2014 22:35

Hi Sunny, you are one day ahead of me. I am on day six today. I was thinking of leaving it to Sunday to test but might be nice to have a glass of wine at the weekend if it hasn't worked this time.
If you don't mind me asking, what does the super ovulation programme involve? If I don't get pregnant in the next two month Dr S said I should start on it to speed things up. Do you need to go into Dr S' clinic or does it involve taking medication at home? My Fsh level was 6.5 and Amh 14. The Amh is in the lower fertility level apparently.
It sounds like you did the right thing in seeing Dr S after two miscarriages. Hopefully this month will be your month. It is fab you are having no side effects on the pred!

sunnyday01 · 23/09/2014 19:53

Sorry I'm really rubbish at remembering who has said what so sorry if I ramble a bit!!

I am on my first round of pred - currently on day 7, so far I don't seem to have had many side effects and have been sleeping well, in fact I have actually been feeling very tired in the evenings! I haven't noticed any burst of energy!!! I'm going to test on Friday to see what it says. I'm also on the super ovulation programme to help speed things up so need to wait until fir so that the trigger shot should be out of my system.

I've had two miscarriages and was lucky to see someone at my local nhs, basically he said you're overweight so loose weight and keep trying, something in me wouldn't except it so started researching stuff and found dr s - it's a lot of money but hopefully it will work. I have high nk cells so on the pred and intralipid treatment.

Hopender · 23/09/2014 11:35

I am not sure about the 80% but I just got to the point where I couldn't keep trying on my own and so wanted to give this a go. I saw some really nice NHS doctors in Edinburgh but even after seven miscarriages they were telling me to go away and try again and that they couldn't see any reason it wouldn't work out. Each time I would try something new, like acupuncture or a change in diet and nothing worked. I ran out of options basically! I'm not sure how well you have got to know to the nurses at the early pregnancy unit but they were the ones that suggested I go for private testing. They told me they see a lot of women who have a lot of miscarriages but also have several children. She told me about a woman in Edinburgh who had had 21 miscarriages and three sons. I think everyone is different but I just knew I couldn't go through it any more without being sure that I'd been tested for everything. Dr S was the first person to find something concrete when he tested my Gliadin Antibodies and found them raised. I am greatful to him for that. I wouldn't say that I have really built up a rapport with him but he seemed to have such goods success rates that I thought I'd go with him. There are lots of other good options out there too though I'm sure.
Good on you for trying twice in one day! I think that might be beyond my DH these days! We did manage four times over five days this month so hopefully one gets to the right place! Feel a bit cramps today though which I usually do about a week before my period so not feeling massively positive.
In good news I slept really well last night so the pred isn't affecting me to of much. I don't feel so buzzy either so maybe my body is getting used to it.
Is there anyone else that has just started pred? I have lost track a little!

Rosa27 · 23/09/2014 00:37

Thanks Hopender - I do hope we all get our much deserved good fortune soon. Do you think the 'can help 80% of patients with immune issues' is true? After how long I wonder. I do hope so. This morning the reading went from low to high so managed to try twice today despite working long hours. Had some spotting this evening which never had before. Hope nothing to worry about. Guess I should start pred tomorrow. V nervous about it. I'm awful on no sleep. Guess nobody is great. Hope you're sleeping now and wake up refreshed at a normal time. Must read up in tips for managing the effects of pred.
Best of luck everyone. Sending loads of positive energy to everyone on this thread. Smile

Hopender · 22/09/2014 14:16

Managed to send that before I meant to rosa. Just wanted to say good luck this week. I don't know if I will get a BFP this month but I hope so. Dr S said to test on day ten. It feels quite early to me but I am keen to get off the pred as soon as possible too. I slept horribly last night. I was awake between 1.30am and 4.30am. Ugh!

Hopender · 22/09/2014 14:12

I am so sorry iggi. Even with little ones to ease the pain, I don't imagine the pain ever completely goes away. I know that I will always remember the little boy we lost last year and December 27, which was his due date, was really difficult. Sending you a hug.
I don't think the late ovulation is something to worry about rosa. I ovulate late on zita west vitamins and early when I have had acupuncture. Has there been any change today?
I really think you will have good news soon. I had three miscarriages before my DS and then out of the blue got pregnant with him and had no problems at all, with zero treatment. I have had four miscarriages since then and will never really understand why it worked out that one time. My point is though that amazing things can and do happen all of the time. It does seem to work in the end for a lot of people with the help of Dr S.

Rosa27 · 21/09/2014 23:04

Hopender I'm also 38 and had a long run already with 3 missed miscarriages. I guess I have to hope a late ov doesn't mean anything bad. Certainly I've lots to treat on the immune side- so really hope the drugs do work!
Iggy I hope you're ok- I have so many dates now that make wonder what if.. I just know if I can have a baby it would help the pain of remembering. It's so lovely you've had two. Do you want another or are you staying in touch with people? Sorry I find it hard scrolling back on my phone sometime it doesn't do what it should and have to start again.
Cornflakes I hope you're ok too. The Humira scared me a lot as had a bad allergic reaction to it which affected my breathing and gave me a rash. I know I couldn't take the 2nd shot, but I do know I'd follow the advice of mr S as he's been so successful at helping so many. I'm sure you will get there somehow, even if the answer isn't what you're expecting. I think taking each day as it comes and doing what you can to relax must help- anything from meditation apps, yoga, baking, comedy, friends - whatever works for you. Sorry I don't have any medical advice. All the very best of luck

Iggi999 · 21/09/2014 21:42

Today would have been the due date of my first miscarried baby - it's hard to mention this in real life as I have my baby now and am not meant to be sad anymore - I am thinking though about the four year old who is not here, while still very happy obviously about the two year old that is... Still I remember how hopeless I felt on this day (having had a second mc in the interim) and how much better things got for me, even if they got worse first!

Hopender · 21/09/2014 15:54

Not sure about the late ovulation thing Rosa but I did hear about it and so I decided to start the pred the day after I ovulated. Maybe it will make a difference next month though. Do you usually ovulate on the same day each month? I ovulate between days 12 and 14 mostly.
I didn't sleep that well last night on the pred but it is the strangest thing because I have loads of energy. I can really relate to the thing that Iggi said about it giving her a bit of a buzz. It isn't an unpleasant feeling but I really hope I don't have to take it for too long. Between my DS and the pred I wonder if I will ever sleep well again! I've put weight on from the miscarriages too. Probably a stone and a half in all. I'm too scared to weigh myself! Anyway, it will all be worth it if it works. I started trying to have babies when I was 32 and now I'm 38, it feels like a long time sometimes.
Just wanted to also say welcome to Cornflakes. It sounds like you have been through a really sad time and my heart goes out to you. I am not sure about the medications but I wanted to wish you lots of luck. There is good news on this thread all of the time and I hope that things go better for you soon.
Hello to everyone else too!

Iggi999 · 21/09/2014 14:05

Hello, I believe some people had concern it delayed ovulation. Hopefully someone else will remember better than me. I didn't use a monitor thing - just the digital ovulation sticks, of and temperature monitoring which I then tracked on fertility friend. My journey - luckily for me I am a "graduate" having had ds2 following four mcs. Steroids/cyclogest and a bucket load of vitamins for me!

Rosa27 · 21/09/2014 12:34

Hi Iggi999 I'm able to get the intralipids up here but so far everything else from London. I have the CBFM and meant to be on CD14 but says low. Not sure now if I might have an issue with ovulating late.. Does anyone know about that?
Where are you on your journey?

Iggi999 · 20/09/2014 15:19

Rosa - hello, hope it all goes well for you. Tbh I loved being on pred it made me buzz and I got twice as much work done as usual! I was on it for less than 6 months in total though. Have you found anywhere up here to prescribe for you or do you travel south?

Tryingno1 · 20/09/2014 14:34

Hi Bootles.
Best of luck with ur choice. Lots of women have been to conventry and had happy endings. It's such a long slog and feels so unfair in the process though!

I'm on my second Month of pred as shehata makes u take it for ovulation and so far no effects except by day 7 I start waking up a little early.
Best of luck to u others who are also starting the pred xxx

Rosa27 · 20/09/2014 11:02

Hi Hopender - yes same as you for pred & cyclogest. Just not started yet... Worrying will be away from OH next tue& wed eve when might be ov. On day 13 but monitor says still low. I also need to do intralipud and take hydroxychloriquine as on complex programme. Taking thyroxine for thyroid too. Rattling!! Wink Work for me also crazy busy. Exhausting and wish could turn clock back and be younger and know what I know now. But need to be positive and take each day as it comes.. The hardest thing perhaps! Great you're ok on pred. I'm dreading it - especially as sleep badly already and still bit overweight from the miscarriages. Everything crossed you get lucky this time.. Stay in touch x

Hopender · 19/09/2014 23:50

Hi Rosa, good to hear from you. I meant to reply before but I've been having a crazy time at work. Definitely doesn't help to have too much to do on top of everything else!
I started the pred on Thursday which feels good and scary in equal measure! It would be so wonderful if it worked first time for us all. We were trying so hard (cringe) when the opk came up that I've managed to give myself cystitis. I'm worried the antibiotics will cause a problem although apparently not according to the dr...
I don't have any symptoms from the pred yet apart from feeling super energised. I look rubbish but that may be unrelated! Not looking forward to putting on weight but it is a small price to pay I guess.
I am on 25mg of pred a day, then cyclogest from positive hpt. Are you taking the same? How do you feel? I really do not enjoy the 2ww! Sending positive vibes your way. I am only two days past ovulation so a way to go yet. Great you are in Edinburgh too! Smile

Hopender · 19/09/2014 23:49

Hi Rosa, good to hear from you. I meant to reply before but I've been having a crazy time at work. Definitely doesn't help to have too much to do on top of everything else!
I started the pred on Thursday which feels good and scary in equal measure! It would be so wonderful if it worked first time for us all. We were trying so hard (cringe) when the opk came up that I've managed to give myself cystitis. I'm worried the antibiotics will cause a problem although apparently not according to the dr...
I don't have any symptoms from the pred yet apart from feeling super energised. I look rubbish but that may be unrelated! Not looking forward to putting on weight but it is a small price to pay I guess.
I am on 25mg of pred a day, then cyclogest from positive hpt. Are you taking the same? How do you feel? I really do not enjoy the 2ww! Sending positive vibes your way. I am only two days past ovulation so a way to go yet. Great you are in Edinburgh too! Smile

Rosa27 · 19/09/2014 22:21

Hopender and Iggy how are you? I'm also in Edinburgh. Just about to start first cycle. Very nervous and emotional. Does anyone get lucky first time ? Happy weekend everyone. Best of luck Smile

bootles · 19/09/2014 20:05

trying, thank you. I have a medical background, but am way out of my depth with this stuff. It's really helpful to hear your reasoning, and it's exactly the sort of thing that helps me decide - ultimately its probably not that one is better or worse, just that individual women have differing perspectives. I'm very reluctant to take pred (because I have convinced myself I dont need it!), so only want to if I really really think its necessary, and so that pushes me towards Coventry.

Good luck with your journey, very much hoping your next pregnancy is the sticky one.

cornflake I just posted you a reply on the RMC thread, but I didn't have anything useful to say in terms of meds I'm afraid (someone here will though, I'm sure)

cornflakes30 · 19/09/2014 17:54

Add message | Report | Message poster cornflakes30 Fri 19-Sep-14 17:25:49
Hi everyone I hope you don't mind if I join this thread. Iam in need of support and advice.
I'm 44 next week and have TTC for 5 years and have had 10 miscarriages.. I have an under active thyroid, blood clotting when pregnant, v high NK cells and now high TNF alpha.
All my miscarriages have been within the first 10 weeks.
I am at the end of my tether and don't know what to do I'm not getting any younger I have tried treatment of Steriods, fragmin, hydrocloxocloroquine, aspirin, I had intreplids on one pregnancy as well and now I have just don't two Humera injections only to get the results back as they are gone up and not down. My endocrinologist is concern about humera and the thyroid causing Hughes disease in the future..
I just don't know what to do. My husband says I should stop and not take the next two humera injections but to name that means giving up..
Has anyone got any experiences similar.
Thankyou

Tryingno1 · 19/09/2014 09:06

Hi Bootles
I'm no way at all an expert compared to the lovely ladies on here and I'm just in my second cycle of shehata plan.

I wasn't sure who to go to either and was changing my mind every day for about a month!

In the end I went with shehata - I got/have it in my head that I need steriods! Weather they treat nk cells or something we don't know there is too much anecdotal evidence on the Internet of women who go on pred and succeed (also many who don't have have to find other routes) but a lot do.

I didn't want to go to quenby and be told ur nk cells r normal and go back and try against not get tx.

I suppose I wanted some form
Of treatment and most who see shehata seem to get high nk diagnosis and get pred. Maybe as he tests peripheral blood while quenby does the uterine levels.

I'm a medic..and i feel quenby is prob more evidence based (more evidence that nk cells in uterus are what's imp not peripheral blood) and quenby has done trials which i have read/seen results of conferences. i still went with shehata who I'm not sure has published his results...but I may be wrong. He also does intralipds and ivig which quenby doesn't (I'm not sure what I think of these tx but I'm going with the intralipds anyways!) it's an area with minimal research and so I've used a lot of mumsnet and babycenter to help me decide who to go to.

It's a hard choice! I hope I went with the right one. Either way many sucess stories with both and other women who have gone a totally diff route. I'm going to work my way through each of them till I finally make it!

Hope that doesn't confuse u more. The other ladies will prob be more helpful!

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