TTC or pregnancy on prednisolone or similar part 12

[teamdozie]

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!

willit, my two 'big' miscarriages got to 8.5 weeks too, and the last one was tested and it was Down's. I have a theory that when I miscarry earlier than that, it's immune-related/not implanting properly and when they get past that point with the help of pred my miscarriages are caused by a dodgy egg. Something important must happen at 8.5 weeks that can't happen due to a faulty gene. Maybe something similar is happening with you. That's not much consolation, if true, I know, but at least it means the treatment works.
How old are you, if you don't mind my asking?

Hi free!
My little one is almost 18 months now and full of it! Walking at 10 months old and now just can't stop her! It's lovely to watch.

Was it you planning on a documentary or similar on this? Did you make it? Would love to see/read it x

Hi all,

Still trying to keep up to date with the thread. I could see such sadness
at Xmas time followed by such recent good news. Willit sorry to see that your suspicions were proved right. My last MC was also 8.5. There seems such a fine line between 7 and 8 weeks and the magic 9 weeks. I have reached 9 weeks 3 times. 2 resulted in DS's and one had Edwards Syndrome which I had to terminate. Like Brownstag says it seems 8.5 is a significant moment. Hopeful I had both DS's with Dr S treatment. Short history. 6 MC's prior to 1st DS incl 1 Edwards and 1 molar. Tried for 2nd DC. Suffered a further 4 mc's before 2nd DS. The only thing I would say is that you need to get the right treatment. If I had of been on the right treatment when trying for 2nd DC then perhaps I would have not suffered another 4. Who knows if it was the treatment or a lucky egg. Baby Lewis is now nearly 9 months. DS1 4.5 years. The extra treatment I had for Baby Lewis was Hydroxy and Intralipids plus I took Fragmin up until 7 weeks. If you are going through Dr S then please insist on hydroxy as you never know. Lastly I also had a doppler as couldn't stand the scans and the 'not knowing'. I found I could walk into the scan at 11, 12, 16 and 20 weeks without having that awful fear of them turning around and saying 'sorry xx'. I even told Dr S prior to the 16 week scan and he wasn't impressed. I only used it before scans and perhaps a couple of additional times.

Anyway good luck to everyone.

Your story is so inspiring, Abney. I agree about the hydroxy too; I stopped it after the Down's miscarriage and since then both the miscarriages I've had happened a lot earlier, so I think if the Down's pregnancy had been a good egg, I would be holding a baby today. I've started it again. Let's face it; a drug without side effects is what we all want, and that's what it is for most people.

Abney I read your story with great interest. I have a DS, then had two mcs, both at about 7 weeks, without ever reaching the magic 9 week mark; then a DD (when that pregnancy reached 9 weeks I more or less 'knew' things would be ok), and then a further 2 mcs, again both ending around 7 weeks. All without treatment. Then I discovered Mr S, was diagnosed with high NK cells, and, thanks to this thread, knew to ask for hydroxy. Am ttc at the moment. I am still bitterly sad about my last 2 mcs; I also feel that, if only I'd known Mr S and had treatment at the time, I'd be holding another DC now. So pleased for you that you had a happy ending to your story with baby Lewis, in spite of all your losses.

willit wishing you all the best if you do decide to go ahead and ttc again!

Rather disturbing article in The Times yesterday (Sat 22 Feb) advising men not to take supplements of selenium or Vitamin E, as both apparently raise the chances of developing prostate cancer. "Taking more than the recommended dose of the mineral selenium raised the chances of developing aggressive cancer by 91 per cent, scientists in America found. Vitamin E pills also boosted the risk of high-grade cancer, and more than doubled it in men with low selenium levels. The US study was a follow-up of the Selenium and Vitamin E Cancer Prevention Trial, which recruited more than 35,000 men to examine whether the supplements could help prevent prostate cancer. The trial was stopped three years early in 2008 after there were hints that Vitamin E was putting them at greater risk." Just try finding a pre-conception supplement for men that doesn't contain either selenium or Vitamin E...

A thank you for your info abney. Can I ask a few questions? Do you mean your prescription/treatment was different with your two children? this is what I'm wondering, I was diagnosed with NK and prescribed the progesterone and steroids and was lucky that my first attempt with this worked. I fear that if/when I'm retested that I could go up into the next band and need the intraplids etc and I don't know if we could afford it. Plus actually getting there more regularly to have the drip. I'm wondering what the likelihood is of my levels going up since my last pregnancy.
Also, what's the hydroxy of which you speak?!

hope all are well, thinking of willit x

Just checking the thread, and so sorry to see your news Willit. What an absolute kick in the teeth having got so far

Hi All have been away for a couple of weeks and have spent the last hour catching up on the thread and reading the great stories as well as Willit's heartbreaking news.

I'm sorry that you are far away Willit and only hope that you have a great support network around you. I went through the same thing as you last month (was 8+3) which seems like an age ago now. There are no words to express how I feel but know that the women on here provide fantastic moral support and advice and they helped me a lot.

Tum, Team, MrsPixie and Baking I am ecstatic for you and glad everything is progressing well.

Hello to all the newbies and the returnees. Abney your story fills me with hope and was good to read so thank you for sharing.

Update from me is that we received the results from the genetic testing and all was clear - there were no abnormalities with the foetus. Have an appointment with Mr S on 12th March where I assume we'll discuss 'tweaking' my treatment programme. Not sure how he can change anything as seem to have been on EVERYTHING already, but he was adamant that I don't need IVIG and should stick with intralipids again. Maybe now we have the results he'll think differently?

Village am hoping that cycles 4-6 are the magic ones for you. It certainly won't be for lack of trying.

Brown hope everything is OK with your sister.

Apologies to anyone that I might have missed off - waves to you all

willit so sorry to hear your news. The further along you get the harder it is. You were probably just hoping that you were in the clear for it all to be taken from you. I remember with one of my miscarriages that I had a scan at 11.5 weeks due to loss of symptoms after a positive one with a hb at 8 and the baby had died. It made it worse that the magic 12 week scan was days away.

luna are you on hydroxy? Mr s will prob say it was one of those things which doesn't really help you. I remember speaking to a geneticist after one of my test results and he said that they test for the major abnormalities but there are many other random ones that they can't test for. It could be that your baby fell under this category? I guess even science in this day and age can't test for everything.

brown don't forget if you haven't seen mr s since April you will get charged a new patient fee if 12 months has lapsed. I fell victim to that in December and questioned it but they refused to budge! Terrible when you think of all the money I have already paid out to him. Some clinics apparently have a 6 month policy.

Brownstag The 2nd MC was the one with Edwards. If it wasn't for the
Edwards this may have been a successful attempt and I wasn't on any
treatment. A lot of the ladies on here have reported trisomy issues. It
does suggest that there is an issue re the quality of our eggs. What if it
is a combination of poor egg quality and NKC issues?

My top tips.

1/ Get your NKC's levels retested. I went from zero NKC issues to very high. For at least 3 mc's I wasn't on the higher dose steroid. You need to ask to be retested as the level of NKC's can change.

2/ DR S doesn't read your history so make sure you remind him. You will notice that he scribbles very quickly on his pad what you tell him. He doesn't look at your history on the PC so the correct treatment can be 'missed'.

3/ With the above in mind ask for intralipids.

4/ Ask for hydroxy. Remember hydroxy takes at least 6 weeks to get into your system.

It would be interesting to know how many people taking steriods,
intralipids, asprin, hydroxy have failed on more than 2 occasions.

Hopeful the treatment was different. DS1 low does pred and fragmin no nkc issues reported. DS2 all of the drugs available with the main ones detailed above. VHKC detected. Hydroxy is an anti malaria drug. It costs about £10 on prescription for a months supply.

anyone at the miscarriage clinic in Epsom Dr. Shehata and taking predinisolone?

Hi JV Pretty much everyone! I'm the exception in that I saw Prof Quenby in Coventry, now 25 weeks pregnant on her regime.
What stage are you at?

Sue yes am on hydroxy have been taking it since I started treatment with Mr S

Welcome JV as Baking said, a lot of us are seeing Mr Shehata (also known here as Mr S) and taking Pred

Abney a quick question for you. In Jan I had my 8th mc (but the first on Mr S's programme) and was wondering if you ever had your NK Cell levels checked following a mc with him. I asked and he has said that it isn't necessary but I find it strange. Surely the levels that he measured before I started his protocol may have changed now that I have been taking the meds and have had a pregnancy? Have an appointment with him on the 12th March and want to make sure that my DH and I give it the best chance we can (like everyone else on this thread).

Luna are you on the highest protocol with Mr S? At my last meeting with him he said I could have my NKS tested again but as I am on the highest he couldnt give me anything else that I am not already taking. Mine could have gone down but I would still take the highest amount of pred when pregnant anyway as a safeguard. I might be a different case though as I did get passed the miscarriage danger period with my 2012 pregnancy so I know his protocol can work for me. I also have a DD so I know I can carry to term - not sure if you have any children yet so he might have to investigate implantation probs etc??

I dont know why he doesnt put everyone on the highest dose of steroids, hydroxy and intrallipids anyway if its not supposed to harm the mother or foetus??

Hi Luna I was tested after mc 4 prior to DS1. No NKC detected. Normal levels. It wasn't until mc 8 was I retested. It wasn't Dr S who asked for it to be retested it was an Indian lady (one of his colleagues on the NHS). She then said I had VHKC. When I was told I was already pg with mc number 9. Took the high dose from BFP but it failed. Number 10 also failed on 40 mg from ovulation.

I then went Private. When I went to see Dr S I asked him if there was any other drug I could try and he made me feel a bit silly i.e. you are on pred, asprin, etc, what else do you want to be on. No mention was made about the hydroxy. It was only when I read it on this thread did I ask him about it. That is when he said no that is only for people who have failed twice on his 'standard' treatment. That is when I said that I had failed 4 times on his treatment. The MC's all happened between the age of 42 and 44 so I knew the odds were stacked against me anyway. On pg number 10 I asked to have intralipids as the Indian lady recommended it. Dr s said no (not recommended). MC 10 then followed.

I like Dr S but you really need to tell him what you want. Go in and say
what you want and say you really don't feel 'confident' going into another pregnancy without throwing everything at it. He agreed with me to throw the kitchen sink at it but why didn't he do this earlier. Not that I am complaining. Got there in the end. Phew!!

Suemays yes why doesn't he. If it fails at least you know that you tried everything possible.

I suppose as a doctor he's got to balance the safety of the patient with the need to achieve success. He probably would be criticised if he had all his patients on the highest doses routinely and if they were being asked to pay for expensive treatments that perhaps they might not need. I for one am quite glad not to have to take 40mg pred and I couldn't afford intralipids if they were suggested to me. So I suppose being prepared to throw the kitchen sink at it has to come from the patient, as Abney says.
Mr S also discouraged me from having my natural killer cell test repeated after having my son (they've only been tested once at the beginning of my pregnancy with my DS 5 years) but he justified it on grounds of being an expense I could avoid, knowing I had a limited budget, which surprised me, particularly as he said NK cell levels can increase after pregnancy. In which case I might have been in the 40mg group, not 25mg.
It almost makes you wonder if he's doubting the value of the NK cells tests but not the treatment.

Thanks Sue and Abney for your advice. I have a mixture of complex NK and VH so started with 25mg Pred from ovulation and went up to 40mg at BFP. Was also on hydroxy (which am still taking), clexane, aspirin, etc etc.

After this last mc I told my DH that I didn't feel that I could keep trying as each time I feel a little more broken mentally and physically. The meds have done awful things to me too and I just felt that enough was enough. Once I calmed down and had time to heal, I agreed to another try on Mr S's protocol as it took us so long to find a cause for all the mcs and a potential treatment programme that it seemed stupid to stop after one failed attempt with him.

I am in awe of your strength and determination Abney that you kept going after 10 and it is making me rethink where we need to draw the line. How many is too many and when do you stop trying?

We don't have any children and have been going through mcs for the last 6 years, but at some point we will need to accept that it might not work and look seriously at adoption - I just don't want to leave it too late.

Who knew that getting pregnant and staying pregnant would be so difficult?!!

It is interesting to read everyone's different experiences. Mr S retested my NKCs immediately after my first miscarriage with him (my fourth in total) while I was still taking 40mg pred/ILs and found that although the killer action had come down to just above 'borderline high' from 'very high', the total count had shot off the scale. In other words, my 'soldiers' were less aggressive, but I had many many more of them! It was then that he put me on the hydroxy, although I did then go on to have another miscarriage under his protocol.

As for saying you didn't need ILs Abney I can't imagine why he would have done that, since it's a harmless option to add in (and only expensive if you go through Mr S/New Life!) and worth it for the peace of mind, surely? It's not as if it's IVIG, which is both horrendously expensive and controversial because of it being a blood product. I do see why he wouldn't put everyone straight onto 40mg pred - there is such a thing as over-suppression, remember, which can actually stop implantation (you need a certain amount of inflammation for an embryo to implant). Plus there can be horrendous knock-on effects of high-dose steroids - it's not one to prescribe lightly (you should hear my GP's tales of bad things prednisolone has caused!).

Just my thoughts :)

Quick hello to all. Am ill with pneumonia but baby doing fine. 17 weeks and little heart beating away. Sorry no personals. I feel awful but wanted to say you're all in my thoughts xxx

Feel better MrsPixie and hope your DH is taking car of you xx

care not car obviously

Luna it took me 6 years to have the first and another 4 to have my 2nd. I always thought that I would give up at the age of xx and then I upped it again and again and then I thought hold on what is the point of going through all of that with nothing to show for it. I think in the end I would have just carried on forever. I think also this is where Dr S comes into play. He is so confident that you will get there in the end and age doesn't really come into it. It was his attitude that got me through it i.e. oh well the next time you are pg then we will try this xxx. All my treatment apart from the last was on the NHS. Apart from intralipids which the NHS won't pay for you should be able to see DR S on the NHS, however, the waiting time can be quite long ie approx. 6 months. If you don't mind me asking how many mc's have you had? How many is too many? I personally have had about 7 or 8 d and c's. Has my health suffered? Well I don't think so. I think if I did not have any children at the end of it, it would have damaged me more mentally than anything else.

Just wanted to pop in to say hello! I was on the thread a couple of years ago and had a DD last April. Reading through the thread has brought it all back!! The tough, tough journey that it is!
I had 4 MC, all between 6-9 weeks. Over 3 years. Heartbeat with all 4. 1 was diagnosed with patau's syndrome.
I heard about Mr S through a friend. I live in the North East so went to see him privately. I felt taking the pred at ovulation messed up my cycles so took it at BFP. Few scary moments along the way but little Ivy was born, small but perfect!! I was on the high dose 40mg pred as I too like free were in the top 5% VHNKC. Also had lipids, clexane (factor V Leiden), omeprazole and cyclogest.
Great to see your lovely news choccy

Wishing everyone the very best on their journey!
Xxxx D