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TTC or pregnancy on prednisolone or similar part 10

999 replies

roseandroli · 14/02/2013 10:17

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

OP posts:
Dannygirl · 25/06/2013 19:18

Hello ladies can I join you? We have been TTC our 2nd child for the last 4 years (last 2 years having IVF first at Hammersmith and now ARGC). I am on Pred and intrallipids for high cytokines and saw a heartbeat today at 6 weeks (absolute miracle after being told at Hammersmith they couldn't help me any more - but of course they hadnt tested my immunes!). I recognise some of you from some of the Infertility threads and its wonderful to hear some good stories. Best of luck to everyone. I am worrying now about the effect of the Pred on the developing baby, does anyone know much about this? x

duggs1976 · 25/06/2013 20:22

Hi Danny of course. Pred is supposed to be safe about 30 odd babies on here to show ! Can I ask did u get pregnant naturally then or is this an ARGC baby?

Dannygirl · 25/06/2013 20:31

Thanks a lot Duggs. Very much an ARGC baby (not been pregnant at all the last 4 years until now)

duggs1976 · 26/06/2013 06:55

That's encouraging Danny. I have them on top of my list ( says after selling house, downsizing etc etc bla) if you read back on this thread many perfect pred babies on here Grin

duggs1976 · 26/06/2013 07:05

Oh and hope you don't mind anothe question ? Where Did you have the intrallipids and when? Also what dosage and timings was pred prescribed by dr taranissi? I'm having hammersmith IVF (NHS) after a failed round last yr @ LWC which was immune supported by dr Shehata. 2 chromosonally CGH tested embies put back and mc @ 6 wks. Hmm Since discovered male factor issues which now addressed so this next round I've told hammersmith about the immune protocol I will follow myself but just wanted to see what ARGC do? If this fails I'm over to them. Great news Danny I've heard it is very INTENSE !

Dannygirl · 26/06/2013 19:48

Hi Duggs I don't mind the questions at all! I have been on Pred (2 tablets I think that's 10mg) since transfer. I have had 2 intrallipids infusions so far, based on cytokines tests, one the day after transfer and one last week (so about 3 weeks apart). They tell me they will test my immunes every 3 weeks and I will keep getting intrallipids if needed. It's all done at ARGC. I found Hammersmith good but they didn't even mention immunes to me as a possibility, and in the end I got to the end of the road with them. Happy to answer any other questions x

Dannygirl · 26/06/2013 19:51

I am sorry to hear about your mc and failed cycles, it's so hard

Tumtimes1 · 27/06/2013 08:07

Morning all, am in the waiting room for dr Gorgy. He's running late! More later...

duggs1976 · 27/06/2013 08:40

Best of luck! Do you have a note pad - his accent is thick so listen carefully ask him to repeat anything as he speaks FAST!! Smile

Tumtimes1 · 27/06/2013 11:16

Hello! Well I had my appointment with Dr Gorgy and it went quite well. He is really nice isn't he, I have to say I did prefer him to Shehata. He just seems more compassionate which is needed.

Anyway - he has given me a new list of tests to have (one of them I knew I'd need, the internal scan) and chromosomes as didnt have these done before. And some others. The whole lot he says will come to £3k! I can't afford that at the moment but am going to see if I can get any done through private health care.

He went through all the tests I have had with Shehata and was really thorough, he also answered all of my questions. I was all in all pleased with this visit and felt very much like I got my money's worth! xx

Arianrhod · 27/06/2013 15:47

tum I don't know if it's of any use to you but I managed to get almost all of my various tests done via private health care - I don't know who you're with, but I think most of them cover miscarriage (but not pregnancy) so if you tell them it's recurrent miscarriage testing, hopefully they will cover the cost. Would you mind my asking what additional tests Dr G wants you to have done?

Tumtimes1 · 27/06/2013 16:20

Hiya - thanks for the advice. On my healthcare plan it says in the items NOT COVERED: Treatment for pregnancy, childbirth and pregnancy related conditions, other than the two complications of pregnancy listed. (and the two listed complications was ectopic and molar pregnancy....)
Do you think that recurrent would still be included then?

The additional tests were as follows: LAD? (dunno what that is), TH1, TH2, killer cell receptors (he said my NK cell tests I had was not detailed enough with Dr S, it was just the numbers and there could be more complications)
infection screening/hidden infection, menstrual blood testing, scan using a saline fluid in my uterus, husbands sperm test thing... chromosomes, Ive written something that says lymphoniside immune therapy? (Not sure what that means...)

xx

duggs1976 · 27/06/2013 22:37

That's great Tum! Yep totally agree with you. If I had stayed with dr s would never have discovered that 1) my nk cells were back to normal levels 2) I had 2 hidden infections in uterus 3) DH had another hidden infection which caused his high sperm DNA fragmentation. He also tested for the similar gene areas etc. Was v v thorough. I did go back to dr s after my failed ivf as I wanted to give him a chance and asked him his thoughts on why 2 perfectly good embryos failed with top notch immune treatment and he got shirty and said was bad luck. ( I remember his words on my first app saying nothing is ever bad luck) and whizzed us out of the office, so v glad you felt you had money's worth.none of our healthcare covered his tests... Think I'm still paying for them now Hmm but better to get everything fixed before mindlessly necking steroids each month like a lunatic.

Tumtimes1 · 28/06/2013 10:26

oooh! Duggs what were the infections if you don't mind my asking?? xxxx He says I need to be re-tested for Chalmydia cos it can hide! xx

duggs1976 · 28/06/2013 11:06

Ureplasma and yes hidden claymidia ( despite all other ivf and iui and recurrent mc tests not showing it from lower down was in uterus just small amount ) DH had something beginning with e enococcils or something.? Makes us sound like 25 yr old whores but apparently not necessarily sexually transmitted ... The anti biotics he perceived were very hardcore for a month and then had to have probiotics x

duggs1976 · 28/06/2013 11:12

Here you go. :

voices.yahoo.com/ureaplasma-urealyticum-infection-5171727.html?cat=5

Arianrhod · 28/06/2013 13:44

tum I had/have both 'hidden' chlamydia (apparently it rarely ever completely goes away) and ureplasma - as duggs says they're not necessary sexually transmitted. The antibiotics to treat them are pretty hard-core but can be managed ok. Bear in mind if you test positive both you and your OH will need to be treated, generally 25 days of anti-bs. Probiotics while you're having the anti-bs helps a lot (but you have to watch out with the timing of when you take them so the anti-bs don't just kill them straight off).

I've also had the LAD testing, it just shows whether you have enough antibodies against your OH - but beware that steroids affect the test results (so if you're taking prednisolone at the time of the test it won't return a true result) and numbers are expected to be low if you aren't pregnant when you're tested.

It's possible that miscarriage may be covered under your healthcare, but you would need to ask them. It is in mine, but I guess all policies are different.

I have to say, as duggs has said, I wish I had seen Dr G instead of Mr S right at the start (although I do like Mr S) because Dr G tests for so much more, several of which I didn't have until a year had gone by after first seeing Mr S - and two more miscarriages. I'm now going through my seventh miscarriage, and I can't help feeling that I could have saved myself a lot of grief - and miscarriages - if I had gone to Dr G at the outset instead of Mr S - who, while lovely, doesn't test for enough things in my humble opinion. That said, he has been the answer for a lot of ladies - just look at all the lovely babies born to this thread alone. Hindsight is a wonderful, if bl**dy useless, thing.

Clabbage · 28/06/2013 17:35

Ari. I'm so sorry to hear you are mc'ing again. I read the other thread so am aware of just how much you'd invested in every way in this. Thinking of you x

sameoldIggi · 29/06/2013 09:38

Ari Sad Sad really sorry to read your news. You must be due some good luck now, surely. X

mollieboo · 29/06/2013 10:07

ari I'm so sorry for you. I also keep up with the other thread and know you've been through so much, am thinking of you.

buzzybee123 · 30/06/2013 13:00

ari i am still thinking of you

I am interested in all this chat about Gorgy as I have to say my dislike of Shehata seems to grow, I admit I am numerically challenged even with a calculator, I thought I was going to be short some of my steroids, so asked for a prescription to be sent, I didn't ask when I saw him as he charges me £20 per box. I was then told that I needed to book an appointment for another scan Angry so basically they are telling me I can only have the prescription if I booked a scan, I don't like to be held hostage, anyway I do have enough drugs pity I can't count

I would go to someone else next time if there is one as I really just feel like a cash cow to Shehata now.

hello to everyone esle

suemays · 30/06/2013 21:36

Buzzy my GP converts my prescription for steroids for me on the NHS so you would get them free seeing as you are pregnant now. Can you ask them to do that for you??? Steroids are cheap and used routinely on the NHS so they might do it for you. I have some steroids I could send you if you urgently need them??

buzzybee123 · 30/06/2013 21:48

thank you sue I have just enough as long as I don't drop any :) I am sure my GP would for the steroids, its all the other stuff if I ever need it again like Hydroxy, I'm too scared to send my 'exempt form due to pregnancy' till I reach 12 weeks, stupid I know but I feel I can't jinx it Confused

when are you going to Zita West??

Arianrhod · 01/07/2013 09:13

buzzy I've also got spare pred if you ever need it - 5mg and 25mg doses. And hydroxy, too, don't forget.

Tumtimes1 · 01/07/2013 09:45

Oh no Ari! I am so sorry to read this! This is sad news. Sending you my thoughts and support. xxx

I wish I had seen Dr G as well from the off, I just can't afford all of these additional tests Dr G has proposed. We have decided that we are going to see if what Dr S has prescribed (Pred, asprin and Progestorone) will work when I next conceive. I know its a gamble but we have decided to trust that this is the issue and then if it isn't, and I MC again, we will throw all the money we can at Dr G's way and his testing. We just don't have the money right now to do all the tests as well on Dr G, and to be fair we haven't even seen if Dr S's way will work.

Also, I am now on DAY 10 of this weird irregular cycle (it is stopping now though thankfully). For those who hadn't read after my last miscarriage I have had two normalish cycles and then this third period started on day 16 and and has lasted now for 10 days. Dr G said it was my hormones settling, or its possible that those faint positives back in May were a chemical. Who knows? I feel very much in limbo at the moment which is why we have taken the decision to push on with Dr S's way and then if another MC as I say, we will absolutely go for everything with Dr G.
xx