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!

Sorry, was just a pic of Nikita from the TV series!

Hi luna and welcome to the thread. I am another fan of mr shehata but couldn't get on with the steroids he prescribed me from ovulation. They eventually messed up my cycle and stopped me from ovulating - it's happened to a few ladies on here. I then went on his superovulation plan to force ovulation and had two chemical pregnancies. I then fell naturally a few months later after a break from the steroids but had to terminate the pregnancy at 22 weeks due to a fatal defect. In terms of the miscarriage treatment, I believe it did work as he added hydroxychloroquine to the other drugs with that pregnancy. I had 5 miscarriages before the two chemicals on baby aspirin.
I then couldn't get pregnant again after taking steroids so switched to mr ndukwe at zita west (also had a cancelled ivf cycle this year with a local clinic!) He gave me intrallipids before I was pregnant to suppress my killer cells which were to be repeated every 3 months if not pregnant. 6 weeks later, I got my bfp so am now about 5 weeks so still very early days for me. I am still taking hydroxychloroquine and restarted the steroids after my bfp. Anyway, my long rambling message was to show you that there are also other recurrent miscarriage experts as not everyone gets on with mr shehatas protocol. He is also very expensive for the intrallipids compared to some of the other clinics - £350 a time compared to £165 at zita west. You may need 4 of these in your treatment so it adds up!

Luna Glad you made it here. I'm really excited about you joining us and I hope this is the time it's all going to work out for you. Everyone here is so full of research we could probably get a collective doctorate :)

Welcome luna. As the ladies have said dr s works for many, but sometimes there are further issues and dr Gorgy is great at those. Pred quenby if you are further north and then there is dr ndwuke part of zita west clinic now. But many IVF clinics and fertility centres treat immunes as part of their programmes now. If I wasn't paying then dr Gorgy will ensure everything is covered from the offset. I was paying so only saw him 2 yrs down the line unfortunately. Still better late than never. Whoever you go with treatment is similar and there are reported successes across all. 85 percent is a banded about figure but I guess the 15 who things don't work out for could be down to a number of things and it is about when you walk away. Some people have children or a child and would rather not go through the rigmarole, some run out of time, some get sick as part of life and some we will never know I guess they find alternative routes to get their family. Whatever way the odds are in our favour so buckle in for the ride - hopefully it won't be a long one for you.

Thank you all for your great advice and for being so welcoming. It's such an awful subject to become experts on but it certainly helps people like me.
I feel so confused as to who to see and seek advice from. Am based in Leeds so Mr Shetata and Dr Gorgy are quite a trek away which generated a heated discussion with DH. I can see his point that travelling to London for tests and treatments will be difficult, however my argument is that I would literally do anything and go anywhere if it meant that we could to have a baby.
We have an appointment at Care Fertility who are closer to us and who also test and treat NK Cells but it's not their speciallity. We made this appointment before discovering Mr Shetata and Dr Gorgy which just goes to show how limited our research has been. However, they should be able to provide us with a recommended treatment plan which we can then compare with Mr Shetata's.

Prof Quenby's success rates on her prescribed course of treatment are quite low and having had another failed pregnacy whilst following her plan I have lost faith. Having read on this thread about all of the various treatments that you have all been prescribed (some of which I don't know and am slightly nervouse about), there does seem to be more than simply Progesterone pessaries and Prednisoline.

Don't be nervous luna, on this thread there are ladies with a multitude of experiences with the various treatments so we can hold your hand no matter what you get prescribed!

It IS a minefield and there's no one-answer-fits-all unfortunately. As duggs rightly said, Mr Shehata's protocol works for quite a lot of ladies and if your particular problems are within his scope of testing/treatment then you will do just fine. The problem comes if your issues are NOT within his scope - but you won't know that, unfortunately! As duggs has also said, if I had known then what I know now I wouldn't have gone to Mr Shehata, I would have gone straight to Dr Gorgy. BUT that is only because it turns out my own NK-fuelling problems are caused by something that Mr S doesn't routinely test for and doesn't treat even if it is tested for, he doesn't believe that anything other than his own protocol is necessary (which unfortunately isn't the case for me). I should say that I have a great respect for Mr S and I like him very much, it's just his protocol isn't enough for my own issues. Hopefully you will be a much simpler case (if you know what I mean!) and you'll be as successful as the other ladies on this thread, lots of whom had their precious take-home babies thanks to Mr S's treatment. Those of us for whom it didn't work have largely moved on to try other treatments - but it's a learning curve, and hopefully not one you'll have to go very far along!

/waves to everyone, choccy hope you're still doing great??

Luna I'd to travel from Scotland to see him - put me off at first but it actually isn't so bad. Get the train. If you are lucky, you don't need to go very often - think I made four trips all in. DH never needed to go, no tests are carried out on him (which I know is a bit in itself).

Hey there! I'm good just lurking mostly at the mo. scan next Friday so starting to brew a bit about that obv. Am 14.4 today. Still getting nauseous. Yesterday evening was horrible. Not actually been sick but have felt like I was just about to. Pred really does mask it - its increased with a vengeance now I'm a week with no Pred! But it's also comforting.

Welcome Luna. Sorry you find yourself here but it's great you've found this thread and hopefully we can help. I've been here two years. This is the furthest I've got having had 7 mc's inc 3 on treatment with Mr S. I'm an enigma to him in that regard! It seems to me that the combo of Pred and hydroxy is proving most successful but what he prescribes will depend on your particular situation.

Hey iggi lovely to see you here. Hope all's well? I have to say that whenever I have need of prune juice(!) I still think back to your first experience of it when you just posted "that was quick" a very short time after saying you we're going to have some. Still makes me lol :)

Hi Luna I'm in York :)
Been on mr s programme over a year and miscarried at 6 weeks but saw hb. Had to have 2 lots if humira and now on hydroxy. Sadly just had a chemical :( had biopsy with prof quenby last month and apparently my cells are 48% so v high and she's not surprised I've had a chemical :( her advice is to stop all meds and do repeat biopsy. Now I don't know what to do! Didn't realise prof quenby success rates were low :( x

'nuff said
Great to see you at 14 weeks Choccy. I thought I'd escaped ms this time (last time) but it was waiting for me on the other side if the pred

of the pred.

Dr Quenby said to me with NK cells at 16% my chances of a successful pregnancy without treatment were less than 20%, with progesterone from day 21 only about 40%, with pred as well could be up to 80%. I think she doesn't yet have the numbers in a big study to back that up, it's only since she started working with Prof Brosens that they've been combining the two things. She did say that as NK levels rise prognosis is worse.

I think if you have the money and the ability to travel, going for the most comprehensive testing is the best idea. We just decided with limits on finances and the time I can take away from family for treatments etc that Prof Q's fairly fixed price, fixed number of interventions was as far as we could personally justify going. I just hope that for once I am on the lucky side of the statistics after a year of every time being the unlucky small percentage where it goes wrong again. If nothing else, I have a diagnosis and an explanation of what happened to my babies. I think I will have to make my peace with that if the "one last try" doesn't work out.

iggi ROFL at your latest name change!

Morning Ladies

Sue i was just reading your post saying that the steroids stopped you from ovulating.. This month is the second month i have been on constant highs on the fertility monitor.. (no sign or symptoms of OV)

I dont know what to do.. Dr S said he would put me on the super ovulation programme but im so confused and its stressing me out..

Its all i think about.. When i asked him about the drugs stopping my OV he said no it would just make my cycles longer.. (so far the latter hasnt been the case).

Im wondering now if its worth just trying naturally and then taking the steroids at PPT.

This is supposed to be fun and one of the happiest times of a couples life and i feel its slowly turning into a drama (nightmare is a bit harsh). And i feel like crying all the time..

Would you recommend seeing someone else? Any advice would be much appreciated..

xx

Teamdozie plenty of us take steroids from bfp and have gotten pregnant ok and some prescribe just that. It's a difficult one because if you are not ovulating you have no chance to conceive. Dr S doesn't really acknowledge this issue apart from super ov which gives him more money each month so is a tough one. I would come off and start from bfp, it seems progesterone is being used more and more too. Best of luck.

Thanks duggs

I have made an appointment to go and see him.. i will ask him to maybe take progesterone from OV instead of BFP and maybe take steroids from BFP instead of OV..

DH and i are disagreeing on this but i can only ask.. Plus ill maybe ask for the drugs for super ov if i do the switch..

Im getting so stressed and thats not helping me either

xx

What does DH think?

DH thinks i should do what Dr S says as im no Dr..

I should relax as he has had lots of success and not to stress.

Not sure he understands how i really feel... my body isnt doing what it should and now i have another problem to contend with

I spoke to Mr S about my ovulation stopping last year and he is aware it can happen. He said I could go 'cold turkey' on the hydroxy and take steroids from bfp if I wanted to - I never tried that. The other thing he suggested was to take them for only 10 days at a time - I tried that but it still had the same effect. I did conceive on Superov but had 2 chemicals.

I did a bit of research and Zita West say that steroids do effect ovulation and all the hormones so advise to do intrallipids before pregnancy around ovulation which will then last 3 months and to keep repeating every 3 months until pregnant. They believe that is enough to surpress the immune system without the steroids. They also suggest a high protein diet with limited wheat and dairy which I was following before this BFP. I also took DHEA and CoQ10 so not sure which one was the winning ticket. I am also still taking hydroxy and since BFP have added in magnesium, selenium and vit e as its supposed to help with recurrent miscarriage (another ZW suggestion from their book). I really liked their holistic approach and the fact they dont seem that money grabbing!

My local fertility clinic prescribed me letrozole (75mg) and it only cost me £5 at Asda pharmacy. I didnt bother with the HCG shot or follicle tracking scan as the consultant at the fertility clinic told me there was research to say that taking the HCG shot can damage the egg if taken after ovulation. I have a clear blue fertility monitor but didnt use that as it never seemed to pick up my 2 fertile days, so we just DTD almost every day on holiday which I thought might have been my fertile time. So you can do it cheaper if you go and see a local fertility clinic. They might offer you clomid but I asked for letrozole as had conceived on it before!

Maybe you should have a day 21 progesterone test to see if the levels are OK? That might indicate if you need to take it from ovulation or not. I only took progesterone from BFP but did try it from ovulation last year and it made no difference.

Sorry I can't help Teamd, I don't know anything about it. Very stressful though. Can't stop as I'm rushing around with work trying to get off to see Pebbles for her birthday and buy her a large drink/give her a big hug.

What was that post about that was deleted?! Anyone see it?

No Free I didnt see the post so have no idea what it was about.

Team men will never understand how we feel. About 3 months after I had to terminate my last pregnancy at 22 weeks, my DH said he thought I should be over it by now!!! They dont have the same connection, desire or need as we do but I guess that's natures way. Have you tried acupuncture to relax? I swear by it. I also have some relaxation Zita West Cds which are great as you normally fall asleep when they are on but you subconsciously hear the suggestions. There is a good TTC one - if you PM me your email address I can send you the M4a file if you want?

Pebbles I was going to say - have you tried acupuncture too? It can help with failed IVF cycles and people who cant conceive naturally.

team You might not be a DR but you know your own body, I went to see Shehata privately as I was not getting on with the pred or his NHS staff he said as my level wasn't too high that I should take progesterone from ovulation and pred from BFP, after a few months I asked for the Hydroxy and he agreed to letting me take it,I've not had any problems with taking the Hydroxy. I agree with duggs about the SO being a bit of a money making thing for him, he will organise the drugs for you and then want to scan you and tell you when to trigger, if you are on the tablets its not too costly but he had to put me on gonal f and that with scan was costing me £400-600 a month. SO is something to consider as it does work for some but I don't think its the answer to you not ovulating now.

choccy I didn't find the pred masked anything, I was and still am sick, has your GP prescribed you anything for the nausea?? I'm sure all will be fine at the scan

pebbles thinking of you

Morning everyone

Sue & Buzzy thank you for all your advice and support, i have made an appointment to see him next month as DH thinks we should give him a year.. (thats too long in my eyes) but hey ho..

i have another spanner to throw in the works this morning.. CBFM still says high and its day ten of testing but ive been getting cramps, the ones you get with OV.. so i decided to use some CB digital ovulation tests i had lying around and .... it says PEAK....

Confused . com is an understatement.. So do i take the roids or not? give it one last month till i speak to him?

OMG....

I have decided to try reflexology again as i didnt get on with acupuncture and we will give Dr Ndwuke at ZITA west a go if nothing happens by Xmas..

Thank you for all you support once again girls..

xx

PS Dont forget to give me your thoughts on taking the tablets.. :-)

Teamdozie, are you very familiar with your temps pre- and post-ovulation? If your temperature is high it suggests you've already ovulated. What cycle day are you on?
With my DS, who's 4, I took pred from a few days after BFP as that was my first appointment with Mr S. But ttc no. 2 waiting to conceive first didn't work and after 2 years of nothing I started taking 10mg pred from 4 dpo, and then 25mg on BFP. This worked once this year, and got pregnant in March, although I miscarried due to chromosomal issues. I am continuing with this regime, plus hydroxy, as it means taking the minimum of steroids. My NK cells are high but not very high.