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Original poster

TTC or pregnancy on prednisolone or similar part 13

996 replies

VillageMum · 25/04/2014 20:30

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!

OP posts:
Rosa27 · 01/09/2014 12:27

Congrats Sue! I've read your story over the months before I joined this (today) and really delighted you're getting positive news.

I'm 38 and following 3 recurrent miscarriages am on Mr S complex treatment programme as have very high test results for my immune profile. Unfortunately had an allergic response to Humira over weekend so won't be able to repeat the 2nd injection. Has anyone else had this problem - or know of anyone with my background who then went on to successfully have a healthy baby? I'm having a real crisis of confidence ...

Rosa27 · 01/09/2014 12:28

Also does anyone know how much intralipids cost? Have seen about £300 on other sites...

Arianrhod · 01/09/2014 14:44

Welcome rosa. IIRC choccypud had exactly the same thing as you - she had the first Humira jab and had an allergic reaction so couldn't have the second. She did go on to have a beautiful baby girl, so don't lose hope. I'm not sure if she's still occasionally dipping into this thread but if she is no doubt she will comment.

Arianrhod · 01/09/2014 14:45

Intralipids ... depends on where you get them done! If you get them done through Mr S at New Life I think they were about £350, is that right girls? If you go to INS in London as I did it's £109 or thereabouts :)

Original poster
VillageMum · 01/09/2014 15:50

matts I'm so very sorry you're going through this. Exactly the same thing happened to me in April - a chemical pregnancy. I had a positive FRER at 10DPO and within a week tests were negative again. Do double-check with Louise, but the advice I was given was that I could just stop pred without weaning, since I'd been on it for less than three weeks, and the cyclogest too. You should have a normal period 2-3 days after stopping the cyclogest. The only good thing about such an early mc is that it won't mess up your cycles, your body will just reset itself, and you'll be able to ttc again next month if that's what you'd like to do. I really feel for you, it's very hard. Sad

Rosa welcome!

OP posts:
Rosa27 · 01/09/2014 22:46

Thanks Arianrhod for the optimism.. Feeling a bit low and so far still to go.. I'm sure we all feel like we finally deserve some good luck (and we do!) Would be great to speak with choccypud if she's back on. I need to get my TNF tested again before given details of my phase 2 and set off on to hopefully get lucky!

Rosa27 · 01/09/2014 22:49

Hi Village mum and everyone else! So sorry for everyone going through tough times and hope those who are pregnant are able to stay positive and calm x

Rosa27 · 01/09/2014 22:53

Final one from me tonight and will try post less .. It's sounds like many people have screwed up cycles from steroids ... Just wondered if anyone decided not to take until BFP to help avoid that and also given some specialists actually recommend it? My worry is my immune test results were v high and so maybe I need to be extra rigid with following treatment programme. Thought very welcome from anyone Smile

MattsMamma · 02/09/2014 08:14

VILLAGE - thank you for responding and I'm sorry you've been through this too. Happiness (obviously with caution) but so short lived. Very cruel. I hope you have good luck this month.

I was wondering roughly how long it would be till period arrives so you have answered that query for me. Hopefully sooner rather than later as would like to try again - how long for who knows but we shall see. Going to try and take things one day at a time. I took the steroids at BFP and not ovulation. Louise did say that chemical mc such as this are usually to chromosomal rather than immune issues - so ROSA maybe that helps party provide an answer toyour query re taking steroids at Bfp? Having said that I may take the next dose from ovulation to make sure - I don't know yet. I did seem to ovulate ok as far as i know when taking steroids at ovulation each month, however I do think it affected the quantity/quality of cervical mucous.

The frustrating thing about anything like this is being powerless - absolutely nothing one can do about it : ( I just really want my period to hurry up now.

Hello to everyone else Smile

Original poster
VillageMum · 02/09/2014 15:52

matts I know, you feel so utterly powerless and go from such hope to despair in just a few short days. But the merciful thing with a chemical pg is that physically you do go back to normal again very quickly. If you are getting negative hpts now and have stopped cyclogest, AF should arrive very soon. I found that restarting my cycle and trying again helped me to move on. Really hope you are out of limbo soon. xx

BFNs for me at the weekend, and AF arrived today as scheduled, so I am about to try again too.

Rosa I always take pred from ovulation when ttc and haven't had any problems so far.

Hello to everyone.

OP posts:
Hopender · 02/09/2014 16:51

I'm so sorry Mattsmama. Life seems so unfair sometimes. I am sending you all of my most positive thoughts for now and for when you try again. X

Tumtimes1 · 02/09/2014 19:07

Hi mattsmama so sorry to read that this one didn't work out..
Like yourself and village I too had this last year and Louise said the same to me. So frustrating and upsetting.

Look after yourself love xxx

MattsMamma · 02/09/2014 21:23

Village, Hopender and Tum - thank you so much. I really do mean that xx

Village - that is the one thing keeping me positive at the moment - that at least I have the consolation that physically things should be back to normal hopefully very soon. Keep having the odd wobbly but otherwise ok - bloody hormones will be all over the place so that won't help. Sorry that AF showed VILLAGE - fingers crossed for your next try x

Fingers crossed we all get what we are hoping for xx

WildflowerMarmalade · 03/09/2014 18:19

Hello ladies. I've popped in for some advice on immune testing - I hope you don't mind if I learn from your collective wisdom.

Me: 39yo. TTC 4 years - never had a sniff of a BFP. Diagnosed with under active thyroid about 2 years ago which is now controlled (TSH1.25). Still nothing. All other tests/ scans etc normal. Male factor ruled out. We're going to CRGH privately and they have suggested IUI - then when they did a full thyroid profile it showed up very high for thyroglobulin and peroxidase antibodies.

I personally believe that immune issues are the problem. Practically every female relative is hypothyroid + my mum has lupus.

CRGH have said just go ahead with the IUI - and not to do any further immune tests unless we go for IVF. I personally think we are wasting our time if we have not ruled out the immune factor.

Any thoughts ladies? Should I go for the IUI cycle and see what we learn? Or should I get the immune tests done against their advice?

All suggestions welcome and thank you.

Rosa27 · 03/09/2014 20:07

Hi WildflowerMarmalade - I'm not long on here either and only have 3 months of reading (albeit obsessively) under my belt, so no expert. All I would say is I'm only a year younger and know I just don't feel I can go through it all again until I know I've ruled out everything.. Partly due to age but more to do with emotional energy after everything been through with multiple miscarriages. You need to weigh up benefit of trying earlier and maybe saving the immune therapy side-effects and costs Vs it not being successful. No guarantees either way but sure you'll get there.. Sounds like most people who preserve do x

Rosa27 · 03/09/2014 20:08

Ps I've also thyroid issues but this didn't stop being becoming pregnant .. Just could stay pregnant.

WildflowerMarmalade · 03/09/2014 22:22

Thank you for that, Rosa . You are spot on that it is all about ruling things out. I'll have a think about it.

This would be our first IUI so I guess we'd learn a fair bit anyway. But I'm sure the immune tests would also be helpful.

Good luck to you.

Rosa27 · 04/09/2014 08:28

Good luck tooWildflowerMarmalade hope it all works first time whatever you decide. Also hope you understood my last entry, must have been falling asleep!

bakingtins · 04/09/2014 20:22

Just dropping in to say hi!

Big congratulations to sue and free for positive scans, and waiting with bated breath for an announcement from tum

mattsmama I was so sorry to see it didn't work out for you this time Sad

Time is flying, Faith is 3 months old and I'm trying to enjoy every minute. Will pop back from time to time to see you all achieve your rainbows.

Original poster
VillageMum · 05/09/2014 09:37

baking how lovely to hear from you. Hope Faith continues to flourish!Incredible to think that she is 3 months already!

"Wildflower* welcome... If it were me I'd get the immune testing done, simply because I couldn't face embarking another pregnancy without covering all the bases... Best of luck whatever you decide.

Matts hope you are doing ok...

OP posts:
MattsMamma · 05/09/2014 11:47

Hi everyone - SF arrived with a vengeance on Wednesday so for once was happy about that so I can at least now move on to next month of trying!

VILLAGE - feeling much better thanks and trying to stay positive ! : )

Wildflower - I have had immune testing and have very high thyroid antibodies. First time I was tested I had high natural killer cells too but my most recent bloods showed killer cells to be at an almost normal level. I was advised though that I would still need the Prednisolone etc because of the high thyroid antibodies.

Hi everyone else !

Hopender · 06/09/2014 21:40

Hi all! Well, I went to get my results from Dr Shehata today after getting a cancellation appointment.
Apparently I've tested positive for high Gliadin Antibodies. Dr Shehata said they should be below 10 and mine were at 97. Apparently levels as high as mine are linked with coeliac disease. He thinks this is likely to be the reason for my miscarriages. So as well as 25mg of prednislone from ovulation Dr Shehata would like me to start a strict gluten free diet. I feel really pleased to have a plan, if a little daunted. The coeliac disease thing is a little bit of a surprise as I have never had any symptoms but apparently this is fairly common. Anyway, feel more positive about trying again now which is something! I was just wondering if anyone had had a similar diagnosis? I start pred in about ten days. Nervous and excited!

Hope all well with all of you!

Rosa27 · 07/09/2014 20:29

Hopender I didn't have high Gliadin antibodies - actually not sure I was tested for this. However I should be starting on pred for the first time in 2 weeks so let me know how you go! It's great you sound like there is something very specific to focus on too to help your chances too. All the best of luck x

Hopender · 07/09/2014 22:11

Thanks Rosa! I really appreciate it. It is good to find someone who is starting pred at the same time. We can compare notes. I am 38 too so it seems we are in a similar situation Did Dr S tell you what your AMH is? Mine is 14 and I'm not sure how worried I should be. He said it was just in the low range but not to worry. Hope you are feeling better after your allergic reaction. Will Dr S give you something in place of the humira? All the best, x

Rosa27 · 07/09/2014 22:43

Hi Hopender - again, not sure if that was tested. I was only told NK and thyroid. I've more blood tests in a week which will determine if I get anything additional to the complex programme. Which one are you on? I'm feeling really fragile after the effect Humira had- worrying more now how I will cope with the rest .. Wish I could afford to stop working - would make it all a bit easier to cope! Anyway I'm hoping I can take confidence from people on this forum who are inspiring.
Hope things going well for everyone else. X