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

Welcome tumtimes ... I am homozygous for the MTHFR C677T gene mutation, if there's anything you want to know I can probably write a book on it by now! The usual treatment is high-dose folic acid (however - there's a BUT to this one, will post below) clexane and baby aspirin (add extra calcium to offset the side effects of the clexane) - but I will warn you now that Mr S doesn't believe clexane is necessary for MTHFR. The rest of the immune world does though (including Dr G), and so I managed to persuade Mr S to give me a prescription for it. Never took it while under him, mind you, as I got him to give me the prescription only after my 6th miscarriage (2nd under his care), but I am on it now with Serum.

The BUT with high-dose folic acid is those of us with faulty MTHFR genes have problems with metabolising folic acid into the body-useable form of methyfolate. If you're hetero for the gene that means you have one working copy, so you will be able to metabolise it better than those of us with two faulty copies. For those with two faulty copies, taking folic acid is largely pointless, since we can't use most of it, and so the recommendation is to take l-methylfolate, which is already in the body-available form. Problem there is you can't get that on prescription in this country (you can in the US) so you have to pay for it. For you who are hetero, the decision is yours what you take. You will metabolise some of the folic acid, as your one good copy of the gene will be able to use some of it, but it's up to you whether you decide to supplement with additional l-methyfolate. If you're interested in this, PM me and I'll give you some recommendations of what to get over here if you like.

abney SO exciting! I can't believe it's come around so quickly, although I have no doubt it feels like a lifetime to you. Huge good luck for the safe and happy birth of your DS2! (see the optimism there? :) )

cartoon I'd definitely echo what duggs said. My third miscarriage I discovered had happened the day before I flew to Spain for 2 weeks, baby was 8+6, I was 9+4. Although it did make me miserable for the holiday, which wasn't great, to be honest my body didn't really recognise the fact that I had miscarried until after I got home - I had some spotting towards the end of the holiday, but that was it. I arranged an ERPC for two days after I returned, and while not great, at least I was lying around doing not much other than read my book in the sun and lounge in the pool, so it wasn't taxing on my body. And as duggs says, you can't fault the medical care in Europe generally - I'm under the care of Serum in Greece, and they've been fantastic, much much better medical-care speaking than over here. I've also taken my DD to a hospital in Crete for an emergency, couple of years ago, and they were also fantastic. Never experienced it in Spain but I know others who are at IVF clinics over there and they all say medical care is really great. Make sure you have your EHIC card (just in case) and relax, hopefully all will be fine! :)

/waves to everyone

thanks ari you've all reassured me so much! I'm more of a relaxer on holiday anyway. no water sports, hikes etc for me!
ive sorted out a new ehic a couple of days ago, I guess that's as prepared as I can be.
as horrible as it is to say my body does seem to like to hang on to my pregnancys and have only miscarried naturally once so from that point of view I'd probably be ok.
besides we need to carry on as normal as poss and do things for our sanity more than anything!
I'm sure most pregnant women wouldnt think twice about going on holiday.

OK thanks Duggs! I have provisionally contacted them (Dr Gorgy) and as I say they reckon even after me telling them the strain of gene etc that there is additional treatment that would help and work along side Dr Shehata's.

I tjhink I will go for the consultation with Dr Gorgy then, it costs £170 but I just dont want to miss anything and want to throw everythign at my next pregnancy. I have done so much research online and it does point to the fact that despite this gene being common and the particular strain of the gene (hetro) usually having no effects, the fact that I am a sufferer of typical indications of this gene as a carrier means I think this MAY have an effect on me and consequentially be causing the miscarriages. (EG: I suffer with migraine with aura, had a heart condition, had a haematoma in the first pregnancy, have had two miscarriages in a row..)

Question, does clexane/heparin have any harmful effects in pregnancy? I'm just wondering if I am prescribed it by Dr Gorgy, but all Dr Shehata has prescribed me is the steroids and progesterone, will they be ok to take in combination? Thanks so much in advance for your help and advice xxxxx

WOW thanks Arianrhod!! such an interesting post! Thanks so much for taking the time to write to me. xx

Very interesting that you too have experienced Mr Shehata's brick wall on clexane and you're right, I will go to Dr Gorgy then and see what he has to say on this.

If he does prescribe the clexane is it ok to take with Mr Shehata's steroids (25mg) and the progesterone? Plus the baby asprin?

All I could get out of Louise when I wrote to her was that I COULD if I want take the high dose folic acid but then I would need to come off the pregna care, and I don't know if I want to do that as I feel i Have honed my vitamin intake quite nicely.

I take:
1 x pregnancare
1 x Omega 3
x2 D vitamins (Dr Shehata advised)
x1 Asprin
And am going to add an extra dose of B12.

What do you think Arianrhod does that sound ok to you? xx

Thanks helter xxx

Ladies clexane and steroids are ok together in fact that was my last IVF protocol so v common. Clexane helps with implantation too apparently so I was on it from egg transfer and was scheduled to take it until wk 16!

Hi just for info I'm currently on 40mg steroids, daily clexane until 32 weeks, as well as hydroxy, progesterone, aspirin, pregnancy vits and vit d, and intralipids every four weeks until 32 weeks if I get that far, all under Mr S, because I had problems discovered late in pregnancy.

abney good to hear from you, look forward to hearing your news soon.

I took clexane to 34 weeks in fact once I stopped taking it my bp went a bit mad! But it seems quite common in pregnancy now

I also took high dose folic acid despite it not bring prescribed as your body gets rid of what you don't need so thought it couldn't hurt x

Oh wow thanks Everyone this has been so useful. Have decided to go for the additional folic acid AND go to dr a gorgy in the hope he will prescribe me the clexane. Can't hurt and then I'll have tried everything and won't wonder "what if".
Your responses have been super helpful, thank you and will continue to follow your journeys and update you on mine!
Is anyone doing acupuncture? Xx

Hi turntimes, that sounds like a good plan so you've got all bases covered. I tried a course of acupuncture when ttc but moved on to reflexology for a gentler treatment. Acupuncture was very effective though, my cycles became textbook 28 days every month.

Just had a scan, 8w3d and still looks good, counting the days till Wednesday as I'll have passed the magic 9 week mark. Still very early days I know, and doesn't seem real yet, I think my mind is in denial to protect myself! I know I shouldn't think too far ahead but baby would be due on Christmas day. We lost Oscar over Christmas two years ago, so it would be a dream come true to have a baby at that time of year.

Waves to all, hope you're all enjoying the weekend x

Sorry I meant tumtimes, I spelt your name wrong! X

Hi Mollieboo! That's amazing that you're almost at 9 weeks! Fantastic! :-) xxx

Is clexane the same as tinzarparin? As I was on tinzarparin but mr s seemed happy with that so does it do same as clexane?
What does hydroxy do/for? Thanks ladies just gearing myself up for rmc appointment! X

mollie I do so hope this is the one. you deserve it. your not far off that magic point now are you, when is ur next scan?

Can not remember who asked re MTHFR but pregacare max now has activated folate in it. Might be worth considering.

Hi ladies, can i just ask did any of you find that the steroids masked your pregnancy symptoms, I've had a BFP but hardly anything in symptoms which needless to say worries me

YES & several other friends who had taken steroids were quick to point out that preg symptoms are often masked when on them - one more thong to fret about lol x

I did not feel the tiredness which without pred was my sure-fire preg symptom and only felt a slight twinge in breast area and that only when thinking of it. But I have always been low on symptoms, even in successful pregnancies. Good luck and do not worry - impossible, i know..... Good luck and congrats of course as well.

Yes buzzy the pred can definitely mask some symptoms. I felt queasy in the most recent pregnancy (resulting in DS) but I think that was because of the progesterone. I hated the smell! I thin pred is actually prescribed as anti-sickness in pregnancy! When did you get the BFP? Did we miss it?! Cautious congratulations! :)

Mel hydroxy - ie hydroxychloroquine - is another immune suppressant I think.

Mollie great news re new scan. Yes 9 weeks would be an amazing milestone. And so lovely if it works out well and you can have a baby to help ease that terrible time you lost Oscar. We have everything crossed for you xx

I spend alot of time poking my boobs, slightly sore I had a bit of a melt down on Wednesday and felt all doom and gloom, so on Friday at 5 days post transfer and got a line, so yesterday I broke out the digi that said 1-2 weeks, I also tested today and the line is slightly darker, progesterone is giving me serious wind issues Its still early days though

mollie Yay to reaching 9 weeks

Does mr s prescribe hydroxy??
Buzzy hope you're ok today, I didn't get symptoms either x

Hi yes he does. I had one mc on standard treatment then he added that into the mix. I think a few others are on it here too.

Hydoxycholoquine is a immune regulator rather than a suppressant. It appears that Mr S is keen to use it more in the future (this is what he said to us). I believe it's safer than Pred. He prescribed it for me initially but I felt so poorly on it I had to stop it.

Thanks all for good wishes.

cartoon next scan is tomorrow, v soon after last one I know but its my first nhs one at my local hospital's Fetal Medicine Unit. How are you feeling and when is your first scan now?

free did you have a good holiday?

mel I'm on hydroxy too, I've been taking it for about three months and haven't had any side effects, prescribed by Mr S.

buzzy congrats on your bfp. I'm on 40mg pred and have had no symptoms whatsoever. Now I'm almost 9 weeks I have slightly sore boobs if I press them and slight nausea if I don't eat much in the morning but had nothing for weeks. As free said and I was told last week by the doctor doing my intralipids, they give steroids to relieve bad morning sickness, she said as you wean off the steroids your symptoms can come out then. I second you on the wind from the progesterone! Glad its not just me. I can't smell them at all though so free I wonder if that was a preg symptom for you?! Anyway its so hard not to worry when you have no symptoms but its all normal on the pred apparently. My best friend had no symptoms for whole 9 months of pregnancy and wasn't on any meds so it does happen, just we all worry more on here for obvious reasons...

mollie I'm doing ok. actually very calm and trying not to focus to much on being pregnant. just want to wait and see what the out come of my scan is first. I've left it on the 29th as there's a good chance ill be 6+4 then. I decided that my pregnant lines were too dark for me to have tested as early as I thought I might have, iyswim. slightly risky I know but not sure I could wait much longer. if I take my lmp and go with a normal 28day cycle I was 5wks on sat. I was a bit sickly last time so I hope that kicks in again soon!