TTC or pregnancy on prednisolone or similar part 10

[roseandroli]

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: 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

Do you recollect anyone putting all this information together about HNK cells and treatment of it anywhere on these threads? I do feel like we are discovering and researching things to the cost of our own health (and finances). Perhaps we could gather all this information together as a tool for everyone?

duggs and sue Will answer your intralipids question as soon as I get home and can type - one-handed on the phone at mo as intralipids in other arm! Will post soon as I get back home.

sue, duggs - posted IL info on the Superov/newly-renamed 'assisted conception' thread. Anyone shout if you want it on here too.

I read the first 8 threads over a very short space of time and I think if you do that, the pattern becomes quite clear. So rather than reading someone's history over an eighteen month period, it was more like 2 weeks and you just see this cascade of intervention, from pred to super ov and on and on. I only take pred from bfp as a result. Admittedly, I am yet to be successful but I guess I have to weigh up that chance. I live in the south west, have a forces partner( often away) and a pre school age ds, so I couldn't keep nipping up to London for his next intervention. I have to balance the needs of my living children (I know how lucky that is!!) with what is essentially my need for another one! If I'm honest I find it challenging that he holds you to ransom when pregnant to have scans with him by prescribing limited Meds. I asked him if it was entirely necessary to have all the scans as my EPU were happy to do regular scans. I really don't believe his equipment is better than my local hosp and feel this is borne out by his failure to spot Mel's foetus. He was not happy to be asked. Crazy.
I know my view is negative but it is very considered and based on my own experience and every thing I have read on here. and... This 85%. Is that 85% of women he treats or 85% of pregnancies. Because, I think if you have women like us who will try over and over and over...well I think the odds are stacked in his favour??

clabbage I told him that I would have my scans at the RMC and EPAU, he seems to be money obsessed at the moment

I genuinely can

Oops. I just cannot see what other motivation there is than money where the scans are concerned. I drove all the way to London the day after a poor epu scan (measuring v behind) for him to scan me again, tut when I breathed at the wrong time, tell me exactly the same thing and how if it does fail, he could do the eprc etc etc, cos NHS are rubbish and then took a few hundred quid off me. I do not see how that benefited me in any way. I had e mailed Louise to check it was worth me coming. It most definitely wasn't.

I apologise for rantiness and shall wholeheartedly blame it on hormonal pred rage!

Any abney news?

It's ok clabbage - being on this for years takes it's toll! Hope u r doing ok ?

clabbage I think we all understand. I also found that he changed his story depending on the ladies history. From my understanding he is telling people that once they get past 9 weeks then all is OK. I find it hard that he is then telling people who lost babies at 29 weeks that it was due to NK cells attacking the placenta. Can not remember who it is who lost one at that stage. It is hard to know what to do. I know I am incredible lucky to have gotten pregnant and stay pregnant off treatment.But, my NK count was so high I struggle to believe that that is the sole reason for my miscarriages, since I should never have made it out of the first trimester. Having said that I am sure if I had taken the meds during this pregnancy I would now be saying Mr S is the best thing ever. I suspect that his treatment does work for a percentage of us, but I also suspect it is smaller than the number of successful pregnancies on here.

Hope that makes sense. I am not anti Mr S but think we need to keep some perspective that he may not be the answer to everyones prayers. Hoping that we all get to have the babies we long for.

Yes I guess if you r successful you will put it down to the plan and if not you give up or move away like scooter ? and some others and we don't tend hear those stories. I am all for the 3 mth rule. Pred for 3 mths tends to be ok. Longer than that you tend run into issues, so back to the investigations to see if other there are other issues. Or pred on bfp or hydroxybor intrallipids alone.

Standard recurrent mc success rates are 70% anyway so his 15% extra claim is probably accurate as there r some obvious attributable successes on here.!

its been really interesting reading everyones comments lately. I think these professionals should pay attention to our findingd here on mn!
I know I've started to sound a bit anti shehata but I think I'm just cushioning myself a bit incase things don't work. but I still believe that this could work for me.
this time I will get more scans on the NHS and really can't see the need to pay out for scans with him around the same time, I know he won't like this. the NHS have already booked me a scan on the 10th June when I'd be due another scan and drip with Mr s. so I will only book in for my lipid, he can't make me spend my money there. I'm having my scan there today so he will have seen me.
as for the 9wk and your safe thing for me I won't feel this. no amount of scans at New life will relax me, another reason why I'm reluctant to pay out for so many. he was so positive last time had me convinced it would be fine yet we lost the baby at just over 12wks because of chromosome issues. not saying Mr s did wrong but I simply didn't realise he didn't have the equipment nor the expertise to pick up on these things.
hope I haven't caused any offence or upset by my comments.

Hey ladies, I am still having problems with Shehata, he is not interested in my low progesterone level and won't prescribe me agolutan,I have asked Cheryl if he will give me a letter so I can get my GP to give me more cyclogest I'm not holding my breath but GP i saw today won't give me more without a letter anyway my question is for those who had Hydroxy, can I ask

1. when did you stop taking it {how many weeks}
2. Do any of you have any hydroxy left over I could buy.

When I went to see him last week I asked for a prescription he gave me the drugs instead and charged me £20 per box, {3 different meds} when I looked at the hydroxy he only gave me 28 tablets not the full 56 tablets. i feel he has done this I will have to get more meds in a month and I have a feeling he will want to see me and then charge me again. I feel ready to kick him into touch, I can do my intralipids elsewhere the only thing I need from him is Hydroxy and progynova

cartoon I am with you, why pay for a scan when you can get them on the NHS, my plan was to go back and see him at 9 weeks, if i get that far but now I just think his behaviour is too unprofessional, I appreciate that this is a business but I am a person who deserves to be treated with respect as well

I think that is maybe why he asked to be removed from fertility friends a while back because there were some issues. I'm all for freedom of speech, taking the rough with the smooth and all that so don't apologise for sharing your experiences as they are just as relevant and interesting as the happy clappy, I was pregnant he gave me a box of pred and now I have amazing children- he is a genius post. As much as we wish to have those stories for each of us, there needs to be a more holistic, encompassing, wider approach into recurrent mc, not just immunology ( some aspects), endochrology, hormonal balancing, anatomical, infections, the MALE - which is probably why Gorgy and ndwuke @ zit a west etc and taranissi at ARGC are doing so well..they are broad and open from the offset.

And I need to learn to spell- clearly

I had my scan all looks good at 6+4.
he did not seem to be happy at all that I hadn't taken pred from ovulation, but oh well I can't change that now. he also said that hes not suprised mine and dhs chromosome tests came back normal he could have told us that. which I found a little odd. its not cost us any time or money by letting them test us so what does it matter. he also couldnt understand why I hadn't thought to bring him a copy if the results. I was starting to feel like I was being a bit told off. he cheered up after the scan though and was back to his usual self (well how he normally is with us anyway). I'm going to email Cheryl tommorrow about my intralipid and beg to have it the same day asy NHS scan, 10th June hopefully they won't be too booked up already.
mollie how are you? I've been thinking of you.

Thanks for words of support. I think what you have all said makes a lot of sense. I so want him to be the wonder solution for everyone. I guess that really is la la land.

Duggs I'm ok, thanks for asking. I'm 5w 4 today. Am yet to make contact with the medical profession. I have enough drugs to see me through for a while so am currently adopting a head in the sand approach. God knows why!

Glad you had a good scan cartoon. I must pluck up courage to book one. I just feel sick every time I think about having one.
mollie..hope all ok?
lemon how long now? I think you are one of a few I've heard of who opted out of pred and have been successful.

/waves to everyone x

Just a very quickie - buzzy I can help you with the hydroxy, I have a whole new box that I won't ever use. PM me your address and I'll send them to you.

thanks ari will do

it says on the treatment paper that you should take hydroxy to 16 weeks, did anyone take it for it longer??

I think I took it until about 30 weeks but I was one of the first on it and he may have refined his process since then.

Great news on the scan cartoon!

Hi all, I'm reading all of your comments with great interest and the more I read the more I'm thinking is Dr S the way forward? I am currently waiting to test on Saturday morning with a first response, I've been on my first course of pred for 8 days now. I have booked an appointment with Dr Gorgy for next Wednesday where I hope to receive the broader open minded approach some of you speak of. I don't like the idea of Mr S stressing me out anymore than I already will be when/if I get my next bfp.

Just to clarify, when I do get my bfp will Dr S make me see him for scans or he won't give me the medication? Is that the way it is? Any advice is appreciated. Xx
Xx

Don't be stressed tum, if you get pregnant quickly the pred won't have much of a chance to affect fertility. You should be ok. Not sure about how he acts when pregnant for any period as haven't been lucky enough to be since seeing him.But you will be another attributable stat so am sure he will be charming. He won't like that you r seeing Gorgy. He hates any one seeing anyone else. He says successful people stick with just him. Wtf? I basically had to tell him i went to him for more extensive testing after my epic 2 chromosonally perfect IVF failure with his full monty programme support but gave no reasons why both failed at 6 wks ( thank god i did) as he was shoving the DQ alpha test in my face but he didn't like. I don't give a hoot what he likes or doesn't tbh. I am paying, I can see whomever I like. just be strong and you will probably have to chose a route or it will over lap. Gorgy is very fast speaking and has thick accent - not fluffy bunny at all but he's open and flexible so take a pen and paper and ask him to repeat if you miss anything! Gorgy is more expensive in long run as he covers more ground and is the full Chicago testing panel.

If I knew then what I know now I'd go for Gorgy every time (as he found our real issues a year after first seeing shehata) but is a bit like choosing a survey for a house. Homebuyer or structural. Homebuyer is cheaper and if all that is need then fab. However structural is more expensive and may highlight more in-depth issues and only necessary if there are more in depth issues to find.

£600 for sheeeta and £2,100 for Gorgy - from the offset rich folk would go for Gorgy every time immunes, infections, sperm DNA, you name it.

Is quite a big difference and will depend on your issues/history but my nk cells count was actually normal when Gorgy tested me last may but I had other issues with infections and spem fragmentation issues so if I'd stayed with dr s alone then I would be no better off.
It's taken since then to this January to fix everything.
Now my hormones are unbalanced but are fixable so just waiting for another IVF round this summer and using dr s for a couple of injectible super ov rounds while I wait! May as well as we approach 4 years TTC

free thanks I have been chatting to some women who had later loses so just wondered how late people took it. On the info I have it says 16 weeks

tums you are in control of your treatment!! If you can have scans elsewhere than do so, you don't have to see him for them. This is about you not them and you have to do what you feel happy with