TTC or pregnancy on prednisolone or similar part 10

(1000 Posts)
roseandroli Thu 14-Feb-13 10:17:57

We are now on part 10 of this thread! I hope you can all find this. 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!

Links to earlier threads:

Part 9: http://www.mumsnet.com/Talk/conception/a1552980-TTC-or-pregnancy-on-prednisolone-or-similar-part-9

Part 8: www.mumsnet.com/Talk/conception/a1492407-TTC-Pregnancy-on-Prednisolone-or-similar-part-8#33842381

Part 7 www.mumsnet.com/Talk/conception/1452035-TTC-Pregnancy-on-Prednisolone-or-similar-part-7

Part 6 www.mumsnet.com/Talk/conception/1419032-TTC-Pregnancy-on-Prednisolone-or-similar-part-6

Part 5 www.mumsnet.com/Talk/conception/1391787-TTC-Pregnancy-on-Prednisolone-or-similar-part-5

Part 4 www.mumsnet.com/Talk/conception/1366323-TTC-Pregnancy-on-Prednisolone-or-similar-part-4

Part 3 www.mumsnet.com/Talk/conception/1348773-TTC-pregnancy-on-Prednisolone-or-similar-part-3

Part 2 here www.mumsnet.com/Talk/conception/1323594-TTC-pregnancy-on-Prednisolone-or-similar-part-2

Part 1 here www.mumsnet.com/Talk/conception/1236324-TTC-pregnancy-on-Prednisolone-or-similar

roseandroli Sat 16-Feb-13 16:11:17

Congratulations delta--I just love your story, and so so happy that your family is now complete. Warmest felicitations to you!

And to kittens on your antenatal classes. What a milestone.

I'm off to have my nuchal scan on Monday. Eeeks. Has anyone had them done at UCLH (maybe sarah?). Do you know how long they wait before telling you the result of the scan and blood test? I know if I did it privately at the FMC they would give me the result in 2 hours, but we are so broke after all the Shehata visits...

By the way lawlee I absolutely loathe cyclogest. If anything bad is happening to me--cramps, spotting, constipation, acne--I just blame the pessaries!

Buster76 Sat 16-Feb-13 16:28:53

Congratulations delta smile

xx

GreenOlives Sat 16-Feb-13 17:18:14

Congratulations Delta! thanks Lovely news! grin

Havingkittens Sat 16-Feb-13 18:04:18

Lawlee, I had cramps around the same stage as you are now. I think they were implantation cramps. Great sign that you're line still appearing. All looks promising!

rose, I had my Nuchal and CVS at FMC this time because of my history but I'm under UCH. I don't know how quickly you get the results at UCH but one thing I do know, which is really reassuring about UCH is that they have the same scanning equipment and even some of the same staff as at FMC as I think Prof Nicolaides has a team there too so you will have a super thorough scan. I have a feeling you get the results back pretty quickly. Best of luck with it.

roseandroli Sat 16-Feb-13 21:48:48

Thanks kittens--I'd love to hear more about your experience at UCH as I'm about to have my first antenatal appointment there. I live in Hackney and most people here go to the Homerton, but I've had and excellent experiences at the UCH early pregnancy unit (where I have been scanned countless times with every mc). But don't know anything about the rest of the maternity service--any thoughts you have would be much appreciated.

Lawlee Sat 16-Feb-13 22:01:07

Thanks Cartoon, Rose and Kittens for putting my mind at rest. Ironically it's stopped doing it now, lol. Just typical isn't it!

Good luck for your scan on Monday Rose I'm sure all will be fine, but will be thinking of you. Hope UCH get your results back to you quickly.

13Iggis Sat 16-Feb-13 23:49:19

Can't believe this is the tenth thread! I wonder where it was I first heard of this treatment for rmc, and Mr S's name? I often think I waste too much time on mumsnet, but in this case it was an absolute godsend.
Ds2 is 9 months today, which seems symbolic to me as 9 months before that I must've been about to get pregnant, and start off this whole worrying cycle for the last time. Everyone on this thread is very much in my thoughts, whatever stage of the journey you are on. thanks

Clabbage Sun 17-Feb-13 10:12:21

Thanks for kind words and thoughts. mollie.. Yes I'm on high nkc plan with fragmin (thrown in by lovely nhs consultant). I'm not seeing Dr S anymore though. I'm afraid I'm in the 'not so sure' camp where he is concerned. He's too convinced that everyone he sees has Nk cell issues and am shocked by duggs hearing how dismissive he is of other theories.. Inevitably, for people for whom his treatment has worked, he is a hero and I guess he would be to me, had his treatment worked. I thought twice about posting this as I know this board has a lot of love for him but I feel it's important to those struggling to keep an open mind.

Anyway, I started to miscarry overnight. I suspect it will all be over by the end of the day. I'm numb in truth. 8 times is just ridiculous. I know you have all been there, so further expression of my feelings isn't necessary.

Positive healthy vibes to all those with fabulous bfp's, scans etc.

GreenOlives Sun 17-Feb-13 11:45:19

clabbage Im so sorry to hear that sad And please don't worry about speaking your feelings about Dr S - I for one completely agree with you and that's speaking as someone who has had success on the plan (39 weeks today!) I think his approach is far too blinkered and I think that's lazy - a good doctor should always be looking for other causes and new ideas to investigate/research. Thankfully my nhs consultant (although past retirement age) is very keen to explore new avenues and was happy to support the treatment plan despite the lack of good research/evidence which is why the nk tests are not yet available on the nhs. If Im honest I really don't know whether its the treatment that sustained this pregnancy or whether this one was just "meant to be", and obviously I will never know for sure. I think my nursing background makes me more skeptical about all treatments really! Either way I am very happy to be finally on the home straight of pregnancy and I hope so much that all the ladies on this thread are able to achieve their family dreams too - whether that be with Dr S or exploring other avenues. Take care of yourself clabbage

Hoophopes Sun 17-Feb-13 14:37:20

Hi - can I join here? I am ttc#2, after conceiving my first dc after 7yrs naturally ttc, failed ICSI and after seeing Mr Nduwke when he was still at Care, having L1 and L2 Immune tests to discover I had: raised thyroid level, factor V Leiden, 2 other thrombophilia factors, Th1:Th2 cytokeine issues and high NK levels. I managed to conceive naturally just before got these results and was put on levothyroxine, clexane, 3 intralipids, prednisilone and cyclogest.

However, Dr Nduwke is no longer at Care, we don't wish to go down IVF again as now know problem is implantation/miscarriage (I had a miscarriage in Jan as had no medication to support pregnancy) so the clinic will not support us.

Not sure how to get the medication we need to get our much longed for 2nd child (am nearing 38), without having to go through IVF clinic for IVF treatment. Been to Gp for help, his answer was to email a gynaecologist at local hospital - so not expecting much from that (and indeed haven't heard) so until local gynae that I have never met says yes he will not prescribe the pred or cyclogest I requested after my miscarriage. I am on the thyroxine and aspirin now for life.

Ideally would like not to have to pay for tests to be done again.

Have read quite a lot of these threads, so encouraged to see people are having babies with treatment!!

13Iggis Sun 17-Feb-13 14:58:39

Clabbage, so sorry to read what is happening, I hope it goes as easily as possible for you today. I think you are quite right to explore any avenues you can, and no-one could criticise you for that.

GreenOlives Sun 17-Feb-13 15:19:54

Welcome hoop smile What a journey you had to get to the root of your issues! As I said in my post further up my NHS consultant did support and prescribe my treatment after I had private testing for NK cells and then my gp was happy to.continue with repeat prescriptions. I would think the best course of action would be to ask gp to refer you to gynae consultant and then hope they are supportive. Good luck! smile

Hoophopes Sun 17-Feb-13 17:01:18

Thanks - apparently my gp can email consultants, so that is what he has done and is now "waiting" a response. Seems like a way to add weeks/months delay to my impatient self right now but I can't ask for referral until they have responded. Great to hear you supported by NHS consultant. I don't expect to get treatment until I get a bfp, which I have only every had twice in 7yrs - but am taking aspirin every day now (due to a stroke in last 2yrs) which may help.

Lawlee Sun 17-Feb-13 20:42:59

Hi all and welcome Hoop!

Clabbage I am so so sorry to hear what you are going through. I wish there was something I could do to help make you feel better, it's just all so unfair. ((((Hugs)))) hope you re doing ok as much as possible. I totally get what you were saying about Mr. S's treatment, I think it's amazing that for some lucky people it is almost a cure-all as it were but i don't by any means think any treatment will be one size fits all! I know you will just be thinking about getting through this right now, but I thought I should mention, there is a private group called nk cells and immunology on babycentre where a few people have posted some info about the Greek clinic that Ari mentioned amongst other things. If you are going to be exploring other avenues at another time you might want to have a look, just in case that helps as well as any info Ari or Duggs might give you of course. Thinking of you anyway and hope it is over as easily as possible for you.

Hoop just a thought but could your gp maybe email Mr S himself? You can be referred to his clinic on the NHS for NK cells if you have had 3 consecutive losses and I'm sure he or someone in the clinic could give your doc some info?
Great to have new people joining, although sad that so many of us find ourselves here but must admit to being a tiny bit addicted to MN myself!

Well, I have found a new thing to worry about, as I have developed a rash of red spots on my tummy. I've had a very little rash like it at certain times in my cycle but this is worse than before so I am wondering if it could b a reaction to the progesterone. Will be calling the clinic on Monday to bend their ear about it! Sigh, has to be something eh! All ok otherwise, test this morning was still positive so just taking it one day at a time and trying not to worry too much. I realise I must be sounding fairly paranoid by now! Thanks all for listening anyway and giving me an outlet for it, such a lovely bunch of people on here! thanks

Lawlee Mon 18-Feb-13 07:23:13

Erg some dark hours last night as I discovered that I was spotting when I went to bed and still a little bit this morning. It's not a lot but in combination with the rash and the period type pain I was convinced it was all over! CB digi this morning though says pregnant 1-2 so feeling a bit better about things today, and guess all I can do is keep my fingers crossed. I guess I could go to EPU, but it's too early to scan so not sure they'd be much help, and think I'm just going to have to wait it out and see how the week pans out. Hope you ladies (and do we have any gents?) are all ok? Thank goodness for my DH he's a bit of a rock at times like this. Xx

lawlee sorry ur struggling with spotting to. mine keeps fooling me clears up for a couple of days then returns but never lasts long.
maybe its the meds? I don't know but its really annoying because you can't help but panic.
sorry to hear your news clabbage

Lawlee Mon 18-Feb-13 08:10:22

Thanks Cartoon thats really kind and sorry you struggle with it too. it does make me feel better that it obviously doesn't immediately mean the end though! You're right its so hard not to panic, and I'm over-sensitive to it I think because spotting is how both my nmc's started. Thanks for making me feel better xx

lawlee is it ur cyclogest? that can cause spotting. that's why I use the tradesmans! so I can rule out that possiblity.

Lawlee Mon 18-Feb-13 10:01:21

Guess it could be but would it have an effect that quickly? I've only been using the Cyclogest for 4 days? Been avoiding tradesmans just because I get ibs that is worse when pregnant, and wasn't sure if it might affect it, but maybe I will have to try that way tonight and see how I get on. Worth a try anyway! Xx

lawlee yes because its easy to kind of nick yourself with the pessary. your more sensitive and more likely to bleed if you catch yourself in there during pregnancy.

roseandroli Mon 18-Feb-13 14:17:11

Hey everyone!
lawlee I second what cartoon said, don't worry about a little spotting, cyclogest can irritate the cervix and cause all sorts of worries.

So sorry to hear about what you're going through clabbage. I trust you are looking after yourself through this very difficult time. I can completely understand wanting to explore all possible avenues and accepting the limitations of doctors. Before I saw Mr. Shehata, I spent a year doing acupuncture, regulating my cycle, and getting rid of constant UTIs that had plagued me since my 20s. If I hadn't done all of that, I'm not sure this treatment would have been successful, or if I would've gotten pregnant in the first place. I guess what I'm trying to say is that for some people pregnancy comes so easily, and for others, like some of us on this thread, our bodies just need more help, and we have to find the best course for ourselves. Thinking of you.

I had my 12 week scan today. We got there and were seen right away. They spend ages checking everything, and though the doctor didn't say much, he sort of murmured that he thought everything looked okay. Then they took some bloods and gave us the results after an hour--a combination of the scan and the blood test. Everything looks good so far, the risk of Downs etc is quite low so we won't take the risk of doing further invasive tests (or spend the 500 pounds to do the Harmony Test). It's hard to believe things have progressed to this stage, and I am so grateful and happy.

Best wishes to everyone and many grateful thanks for holding my hand through the first few weeks.

Lawlee Mon 18-Feb-13 14:37:56

Thanks Cartoon and Rose for keeping me sane! Massive huge yay and a big hug for your great scan Rose that's brilliant and amazing you must be so relieved. What a huge weight off your mind that must be! So happy for you.

Interesting though that's at least 3 of us so far with a history of recurrent UTI, thinking I might buy a massive carton of cranberry juice on the way home later!

mollieboo Mon 18-Feb-13 18:46:23

Hi everyone

Huge congrats to delta on your new arrival, wonderful news.

Welcome to the thread hoop and sorry you find yourself on here.

rose fab news about your scan.

clabbage so very sorry to hear your news. Hope you start to heal soon.

As I've just had my 7th mc and lost my darling baby boy in the middle of it all, I'm starting to lose my mind. We're thinking of giving it one more bash on Mr S's plan and if it doesn't work then go down the adoption route. Its so hard to give up, but also I've run out of confidence in my body's ability to carry a baby to term. Not sure if I'm being too negative as the last two mcs on Mr S's programme were due to a blighted ovum and a chemical type pregnancy.

Very interesting to hear about other tests for hidden infections and sperm dna fragmentation etc, I wouldn't have known about any of that and it does make me wonder if we should be doing more testing before trying again, but money and impatience are factors. Its hard to know where to draw the line isn't it.

Hope everyone ok, wishing everyone lots of strength and positive vibes, goodness knows we need it on here xx

BellyD Mon 18-Feb-13 19:36:56

Many congratulations, Delta. Wonderful, heartwarming news.

Great news about your scan too Rose.

Welcome Hoop I am sure you will find this thread as supportive and helpful as the rest of use do.

Lawlee sorry to hear about the spotting, it is always a real worry, but it is more than likely to be implantation bleeding at this stage, so hang on in there.

Mollieboo and Clabbage thinking of you both and so sorry you are suffering.

Olives and Sarah looking forward to your LO's putting in an appearance iminently. Good luck with everything. Nearly there, yay!

BellyD Mon 18-Feb-13 19:39:04

Sorry, I forgot to mention Kittens antenatal classes. How are they going? Another milestone achieved, brilliant!

Waves to everyone else, lurkers and otherwise.

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