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

Feel for you tum. Again if money wasn't an issue I'd have recommended dr g over dr s everytime. So unfair we have to make these choices. Best of luck and hope you settle down quickly

Hi ladies

I have been reading all your posts on Dr S and i am now worried he isnt good enough.. I found straight forward compared to the NHS and i liked that.. All my tests on the NHS came back fine and the tol dme about Dr S..

Is Dr G so much better?

I am on my first cycle of pred and im supposed to test on thurday ..and he said if our first time didnt work it would be down to bad luck.. Although he did say there is no such thing as bad luck when we first met lol...

I preferred Dr G as a person, he spent longer talking to me and gave me more information. However he is quite a lot more expensive than Dr S so I am willing to go with Dr S for this reason and if no joy and I MC again I am going to beg borrow or steal for the money to test with Dr G.
Its each to their own! Dr S has had plenty of success, I just prefer Dr G as a person.
xxx

team I believe in his protocol as so far it has not failed but I just don't like all this money grabbing, he wasn't like that last year but now that is all he wants

Thanks Tum and Spotty

i will see how it goes.. and if we dont like him then we will try Dr G.. like you Tum we will beg borrow and steal..

Spotty i did notice on one occasion that he was a bit too quick to get us out of the office, i was so overwhelmed that i didnt really think of it until we got home..

Quick question: When you have to take pred for min 10 days do you do a PT on day ten of pred or the next? im getting a bit impatient lol..

xx

team It really depends on what is wrong. If you 'just' have basic high NK cell issues with no underlying extra problems, then Mr S is excellent. He's very good at what he does, and in his specific remit. However, if you have more wrong with you than he tests for - and he only does a relatively small subset of immune testing when compared to the likes of Dr Gorgy or Dr Braverman in the US - then you are going to run into problems.

If you fall into his particular area, then Mr S and his protocol is excellent - just look at all the lovely babies born on this thread alone, thanks to Mr S and his protocol. But there will always be a subset of ladies who have more wrong than Mr S tests for, and that's where the problems come in. Personally speaking I have more wrong than 'just' very high NK cells, and it would have been so much better for me personally if I had gone to Dr G at the start and had all my issues identified then. Mr S identified some of my issues, but not all, and it was the underlying problems that Mr S didn't test for that caused the issues Mr S did find. My issues cannot be treated with pred/intralipids/hydroxy alone, since the underlying causes need to be treated, not just the symptoms (the v high NK cells are the symptom only, not the root cause).

If you are one of those (the majority, I should say) who doesn't have more underlying issues than Mr S tests for, then you should do just fine on his protocol.

It's a hard call - how would you know if you do have further issues, if they're not tested for right at the start? It's tough. Take heart though that the majority of people do just fine with Mr S :)

Hi Aria

Thank you for that..
It is so true.. How do you know if you have anything wrong unless you are tested for it?
My NHS tests all came back ok(ish).. I had an MRI scan a few weeks ago and i was told i have a subseptate uterus and i was told to have an op which would put me out of the game for at least 6 months (thats adding appointments etc).

Dr S diagnosed me with V high NK Cells and this is my first time on his protocol. DH and i have discussed it and said we would give it two goes if no1 didnt work..

My NK cells dont respond well to any of the treatments so im on a combo of them all.. the treatment they do respond to well with is the IVIG (typical ) it would be the expensive one [shocked] but he didnt push us for that..
thank god..

heres hoping that all goes well with him and his treatment works..

Its nice to get others thoughts on him.. i do like that he is straight forward, i find the NHS lot a bit soft

xx

I am another one who believes in his protocol as I did get passed the miscarriage stage with my last pregnancy whereas the previous 7 all miscarried before 12 weeks. The hydroxy seemed to be the drug that made the difference for me or it could be that I had 7 bad eggs in a row followed by one good egg. We will never really know if any of the treatments are working even if we have a successful pregnancy but I am not chancing it by stopping the drugs. At least you will know you have done everything you could to prevent a miscarriage. The major problem I have with mr s's protocol is that the steroids effect my ovulation.

Hi everyone I hope you don't mind me crashing your page, I used to be on here last year.. I recognise some names from the other sites.
I need some advice if possible I'm not getting anywhere with the hospital..
My story in brief... I'm 43. I have had 8 mc all within the first 10 weeks. I have an underactive thyroid, I have v high nk cells and also blood clotting.
I have seen st georges, st Mary's and mr sheehata... All of them have told me different things and none of them agree on anything..
I have been on the hydrocloxochloroquine since jan this year after my last mc.. And have not fallen pregnant since. I, starting to get concerned its stopping me...
I only gave myself to the end of the year as its been going on for over 4 years now I don't have any children.
I have been pregnant taking Fragmin, steriods, aspirin cyclogest etc..
I'm thinking about stopping the malaria tablets but I don't know if its safe to do so without weaning off.
I'm thinking of stopping all drugs and just trying naturally for a while.
I have tried to contact mr sheehata team and they don't email or call me back, it's like I'm not a success so they are not interested..
I have hit a huge brick wall and just need some advice for people who understand where I'm at.
Thanks for listening.

Agree with ari. If you are not successful with dr s he isn't interested in looking further/deeper. Give it 4 to 6 mths max and then move on I'd say.

Cornflakes I remember you. We have another thread as this was just a successful thread but people who aren't fall off into the black hole so we have a recurrent miscarriage thread with assisted conception focus.

I have stopped all drugs end of last year as wasn't getting anywhere with dr s drugs. I have since started seeing a Chinese herbalist and acupuncturist. My hormones were shot to pieces because of the steroids, the miscarriages everything so I have been rebalancing.

Herbs, acupuncture, lifestyle.

My thyroid has just come back 1.91 it was 2.49 and 2.56 so too high to conceive ( dr s isnt interested in any of this as not his field ) so I do encourage you to please go see someone. I am happy to advise? There is a reason we have high nk cells and there is usually an underlaying issues.

Apparently my liver and spleen were deficient and now they are balanced.
My kidney is still too weak so I've got another month of herbs.

Check out Zhai Clinic ....

Thank you Sue

fingers crossed i am one of his success stories..

and duggs i will do that.. this is all so scary..

hi cornflakes sorry im a first timer with Dr S so not much use but i hope someone will be for you

Cornflake..I remember you too. I'm sorry you are still on this journey. Not sure re stopping Hydroxy. Can't believe Mr S hasn't given you an answer.
It's hard not to feel that if the first intervention (pred) fails, it becomes a catalyst to multiple problems. I think going drug free sounds like a good plan while you revisit your options.

I've stated before that I'm not a Mr S fan.The cynic in me says he knows that pred causes ovulation probs and what better to counter it than his super ov plan. Kerching. Sorry, I know that probably says more about the way my mind works!!

Anyway, I took myself off to the big smoke yesterday (met half of Glastonbury on the train!). Had the Harmony test and viability scan. Am thrilled to say that I saw a baby measuring 10w 6d. I have to go back in 2 weeks for Harmony results and nuchal scan. I thought the FMC was amazing.
I have had one mc beyond this point so not in the clear by any stretch but pupo!!

Duggs Thankyou I agree about dr s not being interested in anything other than his treatment he got really angry with me when I said I had tested positive at st Mary's for the blood clotting, he said everyone does there?..he didn't like being told that he missed it. Or that his treatment wasn't working on me...
I am booked into see an endrocrinologist at a George's to try to get my thryoid sorted as its been all over the place since taking all the drugs I think it's why I havnt conceived for 6 months. Having my bloods done as well at the doctor, I hate all the drugs so it will be nice to get off them,it's been over 2 years now. I saw the doctor today and he said to just wean off the hydrocloxochloqune every other day for about 2 weeks. It's so bad that dr s never came back to me. Just puts us on drugs then sends youkn your way.
I'm interested in your Chinese herbal medicine?..I will look at your link Thankyou. I tried Accupuncture for about 8 months but I still miscarried andit was expensive so I stopped.
I'm taking something called cassava root fertility at the moment as well.

Teamdozie... Fingers crossed you a success story hope my story is off putting as we are all different..

Cabbage
I agree with you re dr s completely... Congrats on your scan... Who are you under now?

Welcome cornflakes, sorry about your difficult journey, hope you get some more answers soon.

Team have you tested yet? I usually start testing about 7dpo as I get too impatient!

Clabbage congrats on your scan, that's great news. I booked in at fmc for the Harmony test and then cancelled for a couple of reasons. Glad it all went well.

Morning everyone

tested this morning and it was a BFN... needless to say it has put me in a bad mood BUT on the other hand not everyone gets lucky with just the "one BD" ... so i have to keep telling myself it wasnt planned this time round..

Why do i feel though that i will only ever be getting pregnant and never have a baby.. does anyone else feel like that? I vowed to myself i wouldnt let it take over and im finding now that the thought of testing early is the only thing on my mind..

Apparently i have to tests in two days time again but not sure what that will achieve other than waisting an expensive test... lol

mollie i tested day 8 i think as i too am impatient, didnt tell DH though lol

clabbage congrats on the scan.. thats brilliant news..

cornflake its true everyones story is different.. and ill just have to wait and see how it all pans out.. and we can go from there.. so far we have no complaints but its a bit like anything if you hear a bad comment it makes you think twice..

xx

team so sorry about BFN, how many days dpo are you

Hi buzzy
i am 11 days today .. Louise said to test again in two days..
it would have been too good to be true this month i suppose..

bring on the next cycle i suppose

x

Team it ain't over yet at only 11/12dpo. Test again in a couple of days like Louise said. You can take Pred for two weeks without needing to wean off it rather than stopping dead. It's a balance sometimes but most people find they get a BFP within that two weeks if they're going to get one that month. I got one yesterday at 13/14 dpo and day 13 of taking Pred. :)

If not, this is only your first month right? Hardly a failure to miss the target first month! And you get the fun of plenty of swi again next month :)

Hello all! Well after me thinking I have come off this weird period - I have started spotting again! So weird. So MC was March, 1st AF was day 36, 2nd cycle day 32 and this one day 16 (lasted 12 days)! Its now day 15 and just started spotting again! I'm starting to get quite worried - I have booked a smear and doc appointment for the 18th (earliest I could get).

I really want a scan to check for any issues - what shall I ask them to check for? Does anyone have any experience of this? xxx

Hi everyone. I waved a brief hello about a month ago after my 4 th miscarriage, and bought the 'Baby Friendly' book on the advice of someone here. We've seen the NHS RMC clinic who have said all my tests are normal, cytogenetics on the baby was normal, there is nothing they can do for us other than the aspirin, Cyclogest, folic acid which didn't help us last time. I have 2 children, one MC in between them, and have been miserable for 2 yrs trying to TTC no 3 with only 3 miscarriages to show for it, all at 8-10 weeks.
At this point we either give up or start on the reproductive immunology route. I've looked into seeing Prof Quenby. I'm concerned about the huge number of possible conditions under the umbrella, the cost in terms of time, energy and £££, and the unproven nature of the treatments. No doubt in 10 yrs it will all be mainstream, but I don't have 10 years.

I would really appreciate it if you could be honest with me and tell me how many trips to see someone you made for tests and treatment and how much it has cost you. I'm not sure we have the emotional energy or the funds to take this any further, but I don't want to regret it later.

Thanks Choccy

Congrats on the BFP thas brilliant news...

I stopped pred on day 10. Louise said stop then test two days later if negative and if pos two days later start on 40mg right away..

ive been feeling rough today.. dizzy spells, light headed so who knows.. im testing again tomorrow am 13dpo and then ill wait till nearer af.

its so hard not to think of it as a failure.. its all i can think about.. and i feel like a fail every time i have a MC.

You are right though ill enjoy the trying

Hi Bakingtins. I don't usually post on here but often read what's happening with everyone. I had 4 mcs and all the Nhs tests to be told nothing wrong, and no chromosome issues with the babies etc. It was all being put down to 'bad luck'. My consultant at the rmc in Leeds referred me to prof quenby. I had to contact her when I ovulated and an appt was made for me within the week to go to Coventry for a consultation and uterine biopsy with her. She phoned me with the results 6 weeks later and found I had high nkc. The consultation/biopsy cost me £260. As soon as I got my bfp I started pred prescribed by my gp on the back of a letter from prof q. I took aspirin and heparin, had weekly scans at the rmc in Leeds and gave birth to my beautiful boy in January. I only saw prof quenby the once I just kept her updated with my progress. A friend of mine had also just been to see prof quenby in similar circumstances and is now 15 weeks pregnant, after never getting past 12 weeks. Sorry a bit long winded but I hope this helps and gives you faith to carry on. At the age of 42 I had virtually given up, I truly believe if I hadn't seen prof q we wouldn't have our little boy with us today. Good luck to you.

Thank you v much baby buttons
Do you mind me asking if you suffered any side effects from the steroids?

I don't mind at all Bakingtins am happy to help. No major side effects other than waking at 2 every morning, usually because I was starving hungry (cheese muffins and brien sauce at that time of the morning tasted so good!). I did put a bit of weight on quite quickly but didn't get a hugely puffy face or anything.

I did develop gestational diabetes later on which my consultant predicted could happen with pred but whether they are what caused it I'm not sure. All worth putting up with for the end result and I wouldn't have any reservations about taking them again if we were to try for another baby.

I was also advised baby may be on the small side because of the pred, but this wasnt an issue, I had regular growth scans from 28 weeks as he was on the large side, and a healthy 7lb 9 oz when he was born.

I did ask siobhan quenby about the risk of cleft palate and was advised this was very rare. To be honest I was more worried about my age rather than the pred.

hi ladys

tested again today and BFN... but i was expecting it.. AF is on the way... (i have signs)

so bring on round 2 lol

babybuttons i just wanted to say that your story has given me such hope as our stories are very similar (like everybody else too).. its so nice to hear that this treatment works

xx