TTC or pregnancy on prednisolone or similar part 11

[Buzzybee123]

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!

Whispered congrats baking.

Free someone started Pred at 6wks and all was fine for her. You'd have to go back to thread 1/2 to check who.

All fine here. 15.4 scan all looking good and currently plugged into my last intralipids! And taking my last hydroxy and cyclogest tomorrow. Can't wait for total freedom from meds. It'll just be aspirin and vits then. Still being hit by flashes of nausea at random times of day. Its beginning to register that I need to start acting like this baby is going to be here in about 24 weeks time!!!

Wow Choccy that's amazing news. It's such a weird feeling being treatment free isn't it. People treat you like a normal pregnant person but you don't always feel like one.

I remember one of the girls started at 6 weeks yes. Can't remember who though.

Whispered congrats baking!

Free we're taking the rest of the year off and then we'll probably try again on same treatment.

Free also I've always taken pred from ovulation. I got pregnant once and didn't know as I still had a period so I started pred about a week after period and miscarried a few days later.

Seems from others on here that hydroxy is a big success and I was taking it in my last pregnancy, but the doctor who does my intralipids said she wouldn't recommend taking it in pregnancy. I still will next time as I'm too worried not to, no-one has heard of anything negative about it have they?

There are no contraindications with taking it in pregnancy, I remember my gp looking it up when I was prescribed it.

But no, haven't heard anything negative at all. Mr S is the only one using it as far as I know and seems to be having a lot of success with it.

Hello ladies. It would be such a comfort and relief if I could join this thread. I've found my way here as a direct result of reading freelancegirl's article on recurrent mc in the Times on 17 September - so a huge thank you to free.

I have just turned 44 and had my fourth missed miscarriage in July (the second I've had in the last 12 months). I have a DS (from a former marriage) who's now 12 and a DD aged 2, with my husband. Two healthy children, so life is not all bad - just these apparently inexplicable miscarriages in between. They happened on either side of having DD, starting when I was just 38 and hardly an old crone. The first one was the most tremendous shock and grief as I'd had a fairly easy pregnancy with DS, and the next three... well, you know. You gather yourself up to get through them, but underneath you are in free fall.

Each of these pregnancies stopped progressing at around 7/8 weeks. After the first we took to having early scans at the Fetal Medicine Unit in Oxford (local to us) and in each of the next three mcs we saw a heartbeat in week 6/7, which would no longer be there by the time I was rescanned in week 9. DD was the miraculous exception - I have no idea why. I took Marilyn Glenville's Fertility Support multivitamin before having her, and was put on 75mg aspirin as a precaution from week 6. But this magic formula didn't work in my last two pregnancies.

We've had all the standard tests - hormones and full thrombophilia, karyotyping. Each time we've been told that there's nothing wrong, that we've just had bad luck, and that these must be chromosomal mcs due to my advanced age. I can perhaps buy that now, at 44, but at 38, when I had the first mc? I'm sorry, but that's hardly ancient - and I then went on to have DD who is perfectly healthy just short of my 42nd birthday! Age could well be a factor at this point, but I have a sneaking feeling that it might not be the whole story.

On 16 Sept DH and I saw a mc specialist who assured us that we've now had all possible investigations that modern medicine has to offer and, since I still get pg easily, advised us just to go away and try again. So when I read free's article the very next day I nearly jumped out of my seat. I rang Mr Shehata's clinic straight away and we have an appointment on 8 October. I now wonder if immune-related 'recurrent miscarriage following live birth' doesn't fit my pattern.

I don't even have a diagnosis yet but I would be so grateful if I could join you during this next nerve-wracking month while we get his tests done - and then hopefully beyond. It seems crazy to say so, but I now wish that someone would just please find something wrong so that we can address it. If the problem is just age - so be it. But I am not going down without a fight!

I have spent the last few days reading back in this and earlier threads and you are the most brave, humane and inspiring group of women one could ever hope to meet. It would be an honour to be able to hang out with you and ask your advice. If nothing else, I hope my advanced years will make everyone else feel blissfully young!

Thanks for reading this long post.

Welcome villagemum exactly why freelance is such a pioneer that people like us can find this thread. You have nothing to lose by trying and if you do get a diagnosis then perhaps ask for hydroxychloride too as it does seem to be dr shehata's secret weapon. Best of luck.

Hello village, welcome to the thread! Really glad you've made that appointment for Mr S and that you found about about the treatment through the article. That's precisely what I hoped would happen. It doesn't work for everyone but 85% success rate is pretty good going when you consider that most of us are late 30s and more and have had several mcs by the time we've found the treatment. In excited for you hope it goes well. It's a great place for info and support here. Although we do keep losing people from the thread when once they've had a baby :)

Hi village and welcome. You've cheered me up that at 38 I am "hardly ancient" !

Started 20mg pred today, already on the Cyclogest, and have a scan at 5+4. If that shows intrauterine pregnancy I start clexane as well. Buckled up for the roller coaster ride....

Fingers crossed Baking

Hi village I too have an appointment with Mr S on the 8th Oct as a result of reading Free's inspirational article. This thread and the amazing women on it have been a great source of information and support and I hope that it helps you as it has done me.

Went for an appointment at Care Fertility Sheffield after DH heard about a consultant there. As this is really the first time he has really registered the seriousness of our situation and become actively part of the research I went along with the appointment. Met Dr Shaker who talked a great talk on IVF but as I repeatedly reminded him, we manage to get pregnant but not maintain past 8 wks. Care run the same tests as most clinics using Chicago and treat with the same meds including intralipids. I kept pushing for success rates but he just kept saying no two cases were the same . Finally admitted that they had never treated a woman who had experienced 7 mcs.

This leads me to my question to you all. Is it possible to follow Mr S's treatment programme but to have the IVF more locally? Do I even need IVF which is what Dr Shaker seemed to think I need? Am worried about how to go through IVF in London when living in Leeds. Can anyone offer any advice or at least tell me how Mr S works?

lunar mr s is happy to follow the immune therapy alongside ivf at another clinic but he might insist you go to him for intrallipids. My local gp prescribes the mr s drugs for me so that I don't have to keep going back there but then I have been a patient of his for a while so he has had a lot of money out of me! I tried an ivf cycle at a local clinic alongside mr s drugs but the cycle was cancelled. I have since fallen pregnant on letrozole.

Hello to villagemum too!

Start necking those drugs Baking!

Luna if you've been getting pregnant up until now ok then why do they think you need the IVF? Glad you have the appointment with Mr S, let us know how it goes. The other guy you saw sounds like he really doesn't have the RMC expeience you need. I imagine, from what I've seen with other people, if you have got pregnant ok so far Mr S won't mention IVF or if you needed a bit of help might mention super ovulation programme before IVF.

Crossed posts Sue, how is it going?

My GP also converted my private presriptions and then carried on prescribing when I needed it, not all would be so helpful. Take my article along!

Thanks Sue. My GP practically had a nervous breakdown when I showed her the prescribed medication that Prof Quenby recommended. I ended up having to buy it all privately which wasn't the end of the world but I did get a BIG supply so have at least 1 full months supply of Pred and Progesterone.

Either way it's good to know that I can follow his programme and have IVF if required elsewhere. Should I be asking for Hydroxy and intrallipids from the start as I have already had a mc on Pred and Progesterone? Until I have the appointment I'm not too sure how it all works.

Hi Free what is super ovulation. Seen it mentioned here quite a bit (am learning a whole new mc language)

It's a programme Mr S has used for people who have James with getting pregnant but are not yet at the IVF stage, as far as I know. The super ov folk now have their own thread for assisted conception after miscarriage somewhere. Someone will be able to link to it.

Yes insist on hydroxy. There is a spin off thread assisted conception after recurrent miscarriage that has a lot of us who are on super ovulation or who have been. It is for women who ovulate but just might need some help in timing and maybe produce 2 eggs per month. You either take letrozole 2.5, 5 or 7.5mg days 2 to 6 then a mid ovulation scan on either day 10 to 12 then depending on size of follicles a trigger injection and timed intercourse. That's it. Or else you may need injectables gonal F which puts cost up a bit. Usually £300 a cycle to £500 depending on what drugs you get given.

I googled it which although informative, was rather frightening too. At least I have a better idea of what to be asking for. Roll on 8th Oct!!!

Thank you so much everyone for making me feel so welcome. The loneliness of trying to research my condition without any real input from the outside world or medical profession was beginning to drive me bananas!

duggs thank you for the tip about hydroxychloride - will ask him! I am ready to swallow anything if it's recommended.

free your article was simply brilliant. You put in words exactly what I've been feeling after each mmc - the horror, bewilderment, powerlessness; anger towards the indifferent medical professionals who dealt with us; terrible sense of responsibility towards the child I could not help, even though I knew, rationally, that these losses were not my fault. I read it aloud to DH that evening and he was almost moved to tears. Would love to see your documentary too.

Bakingtins congratulations! And yes, you are a mere spring chicken! You positively have years and years of childbearing time left!

LunaGL We are seeing Mr S at Epsom on the 8th at 12h15. I'll be the one with the grey-haired DH, loopy toddler and adolescent boy playing on iphone in tow (unless I can park DS at a friend's house first!) Re IVF: the mc specialist we saw this month (who is also attached to an IVF clinic) told me that if I can still get pg naturally that would be the better way to go, as success rates for IVF aren't always great, esp at my age when using your own eggs. Since everyone was saying my mmcs must be age-related chromosomal ones, I asked him then why not do IVF on me with PGS (pre-implantation genetic screening)? But the success rates there are low too - and I now believe that if the underlying problem is immune-related, then any IVF pregnancy will fail anyway. I now feel it would be best first to probe for any immune issues, follow Mr S's programme if they're present, and go the natural route. Hope we both find answers in due course...

sue I've been awed by your resilience, having read your story on this thread. I hope everything is going well for you.

Would love to write more but running out of time as usual. Big wave to everyone else!

Village I'm also seeing Mr S in Epsom and have an 11:45am so will most definitely see you there. I'll be the one looking determined (and hopefully not too horrified). Half an hour doesn't seem like a long enough appointment but I guessing he knows the key questions to ask in order to know what to test for.

Luna I've just gone back a few pages and read your history - I'm so very sorry that you're going through this for the seventh time, and after seeing Quenby too. Fingers crossed that Mr S will make all the difference! Just realised I won't actually have DS in tow as he'll be at school (keep thinking his half term is weeks earlier than it actually is) so look for the two oldies with the toddler. Yours must be the appointment just before mine. Please say hi if you'd like to; though appreciate that it's a sensitive moment and like me you'll probably be sitting there with anxieties roiling away inside - so understand if you just need to think!

Free and duggs I've read the info about super ovulation with great interest. I'm wondering if this is going to apply to me... On top of the age issue I've had the (for me) new complication since my mmc in July of having my cycles going haywire. I never miscarry naturally so this was my fourth ERPC (actually fifth, since I had another for missed tissue after my second mmc). I've always had clockwork cycles of 28/9 days, with my body treating each ERPC as day 1 of a new cycle. But this time - bizarre isn't the word! I seem to have had 'phantom' cycles, with what appears to be ovulation at the right time each month (have been testing with OPKs), followed by excruciating cyclical pain two weeks later just when my period should again be due - but no bleed. This has happened twice now and I'm on tenterhooks waiting to see if I bleed on 4 October when AF is next due. Spoke to Louise at the clinic about it and she says either my cycles have actually been anovulatory since the ERPC, hence no AF, or there's a chance that I may have scarring causing a blockage, in which case they'll give me a saline scan. What joy. Will be speaking to Mr S about this too on the 8th. I wonder if anyone else has had a similar experience?

Interestingly a friend just sent me a link to an EQ test to assess emotional intelligence. One of the questions was "your close friend had just had a miscarriage, how do you respond?"
A- support her by visiting but not discussing the loss
B- visit her let her talk about her experiences and discuss her feelings
C- support her by suggesting she go out for a good time
D- give her space
I guess a combination is what we find based on who the friend is but the number of people who fall into category A is remarkably high. Although 6 losses and 4 yrs later people have little choice in topics
Not sure how your experiences differ, probably not, but interesting in a 25 question survey this was entered. Not

"Grandfather just died" as everybody's grandfather has died or will die. It's a certainty. Nothing unnatural there. And they will only die once. (Sad as is may be at the time).

VillageMum, welcome. A fleeting reply to one of your questions; I have used ovulation sticks for years now, probably 5 years' worth of cycles in total and a positive was absolutely always followed by ovulation as shown by a temperature shift. I know they say you can gear up for ovulation but then not ovulate, but that's not been my experience, for what it's worth. Charting over the next cycle or two would be one way to find out for sure if you are ovulating, but then you'll probably find out before then anyway with the saline scan. Does Louise mean a blockage that was keeping the blood from 2 AFs inside? It's difficult to imagine that would be possible. Or a blockage of the tubes?, although would that affect AF?

Hello, warm welcome to villagemum, and also a belated welcome to luna, sorry I missed you before. Its wonderful that you found out about NK cells from free's article, I hope you get the treatment needed for success. Its hard to believe doctors still say its bad luck when we miscarry over and over again.

Villagemum as brownstag suggested, temping is really good for knowing if you've actually ovulated. I had a late miscarriage in August so I've started temping to check if I'm ovulating so that I know when I'm back on track. (My temp shot up this morning and now I don't know if I've o'd or if it was the wine last night!) I'm going to reflexology weekly too for 6-8 weeks to speed things up. Not sure if this is an option for you, acupuncture is really good at getting cycles back on track too...

Duggs that's interesting as I've been thinking that since I lost Joey whenever I see friends, the hairdresser, work colleagues etc they totally ignore the subject - I'd much rather people would say how sorry they are for what's happened. I know people worry about upsetting me though so I can see it must be hard to know how to act but not acknowledging it is a lot worse. Its totally different this time as everyone knew I was pregnant, but an early mc is so isolating and lonely when a lot of people don't even know you are pregnant.

Thanks everyone for all of the advice about the counsellor the other day, I didn't go back to her and I've booked to see a fertility counsellor at a local ivf clinic. Worth a try.

Hope the pupo ladies are doing ok and not mentalling too much (!).

V hard thinking I won't try until 2014 now but I've got some social stuff come up, wedding etc and its nice to be able to plan to go and have a drink and relax. Its a constant cycle of being pregnant and worried and then grieving and then trying again isn't it, your life feels on hold all of the time...

xx