TTC/ pregnancy on Prednisolone or similar

[freelancegirl]

I am not sure there are enough people here to start a thread but have been chatting on one on the pregnancy boards and was wondering if I could find any fellow ttc'ers on Prednisolone or similar?

I have just received a diagnosis of very high NK cells. It was a bit of a shock actually as it turns out I have some of the highest levels - 3.79 when anything over 1.8 is considered 'very high'.

Am trawling through Dr Beer's book and Dr Google and trying to found out more. I have been recommended 25mg prednisoline steroids for two weeks starting with ovulation, increasing to 40mg if/when BFP and then Intralipids Cyclogest too. I still have 13 days until I pop my first Pred.

There now just seem like so many hurdles - actually getting pregnant being the first one. I was prepared for high NK cells as I have high thyroid antibodies but it was shocking to be in the top 5% of people treated at the clinic. I am not sure if that gives me much less of a chance of being successful.

It would be great to hear from anyone else who is undergoing treatment and of course also if you've had successful treatment.

Good questions! I have pondered many of those before too.
I did also ask him (well actually DH asked him) if the NKcells have any other detrimental effects on my health. (He said no!)

Also at the end you could ask him what further research he would like to see being done in that field. Or is there any research or studies he is involved with at the moment with NK cells?

I think just do that bloody test! If it's negative, it's fine, it can still turn positive in a few days, or if not, you might have more effect of the pred for next cycle (if that's how it works?!). And if it's positive, you know to move onto hard core drug levels to give yourself the best possible chance.

I just thought of one more question!

If you have the highest levels of natural killer cells, does that mean you miscarry earlier than some one with not as high levels?

Ooh, they are great questions to add. Especailly about the research and what steps he would like to see next in terms of miscarriage investigations, treatment etc.

I will also add the high cells v time of miscarrying question. I might be able to answer that to some extent from my experience, being that I have some of the highest cells he sees (in the top 5%) and although I started to miscarry this time at 12 weeks, the baby measured 7.3ish. With such high levels am thinking that 7.3ish is quite far (ish) to get along? So maybe there is no correlation between level of cells and attack time. But am not sure.

Ok, I will do the damn test and get back to you in the morning and try not to go out and drink myself silly if it's a negative, just in case it turns positive later on.

Oh, I will be speaking to him again in this process too - when I go to appointments with him, so there will be further opportunities to ask about more ins and outs of treatment etc. I am taking a camera to all appointments but this is just a more official interview.

Have also added:

After how many miscarriages do you think investigations should be started? As I am pretty sure he will say two not three.

And yes, I asked whether NK cells harm in any other way too and got the same answer.

Another few q's for tomorrow freelance

How many women do you see who have had all the nhs tests and have been told to keep trying - turn out to have high nk cells?

How many women have you tested that don't have high nk cells or any other diagnosis?

Are there any circumstances where the reason for rmc can lie with the partner? Ie could low sperm quality ever be a cause for rmc?

Do you think miscarriage is more common because more couples are starting their families later in life?

cheerful I also started metformin in March and built up to the full dose by April. Mixed results - I started taking it two weeks after my last mc and with previous mc's it's always taken 60 days to get my first period. On metformin it took 57 days. However prior to that last mc cycles have been ranging between 39-41 days and my first full cycle on metformin was 50 days. So much worse. Am hoping Mr S will scan to check how my follicles are growing and hopefully offer me something to either help them grow or trigger ovulation.

Brilliant stuff Digi! They are going on the list now.

Have you had any other scans with Mr S yet? I know that once we get BFPs we have to have scanned, hadn't looked into cost of those yet but would be interested to know. WOuld love to know why my ovaries have been twanging for about ten days.

Another question:
Do women increase in the NKC's as they get older?
(as the question of m/c's increasing with age is yes, as there are more chomosomal problems, but could an alternative/co-existing explanation be more nkc's?)

Just popping back to say, that it should be confirmed at scan on monday that I have m/c'd again.

Hi, I am 19 weeks pregnant after IVF combined with the Colorado Protocol. It was my first successful cycle after 11 failures, two of which involved failed implantation (the rest did not get to transfer) so I was insistent on trying the Prenisolone protocol - and I was on 10mg a day for 30 days following ovulation (or in my case, egg retrieval), together with progesterone supps twice daily up to ten or twelve weeks pregnant.

My clinic would not test for NK cells, as in their view it is unproven, and because I had had a successful pregnancy before, but I think the proof is in the pudding. I did a range of other reproductive immunology tests and all came up normal. One odd thing was that I showed low in folate, even though I was on the recommended supplement.
I know you have to be careful to keep the prenisolone dose low, so I would query increasing the dose in early pregnancy to 40? My IVF specialist thought 25 mg too high, and switched me to 10 mg for this cycle. It worked.

Hope this helps, even though you are trying naturally. Some people include heparin or baby aspirin in the protocol, but I left it out. I did take baby aspirin after my first successful IVF though, but only for a week, and I only took progesterone for two weeks under that clinic as well, because they thought progesterone supplementation was unproven - so you do always have to be prepared to hear/ have different opinions from different specialists. Doing your own research is a bit fraught as well, because the most persuasive advice might just be the best presented rather than the best science. And as my IVF doctor said, he gets to read stuff that I could not get to, so it is unfair to expect patients to be the better informed.

Morning ladies, fantastic questions by the way. I waited all day yesterday for call from the hospital to no avail :( Am off to Germany today for a week as DH doing a race and just got AF today, which means am stressing a little if I should be taking Pred from ovulation onwards. Not showing it though as he has enough on his mind.

Would you mind asking him when you ask At what stage does it attack the foetus ...and from his experience is the success rate of having a baby higher when steroid treatment is commenced before implantation or once pregnant? Or as you say for months prior to trying as the Prof Q article implies.

Would also be interested as willitbe mentions, do they increase as we get older. I got to 12 weeks in my early attempts but recently never past 6 - 8 weeks in my last 3 pregnancies. My consultant also told me they would wean me off Pred at 10 weeks. What is to stop NK cells going high again and causing another mc, how do they proactively ensure that isn't the case?

Taking a deep breath and thinking about puppy now :). Counting down the days. We are getting a girl Hungarian Vizsla - Do any of you have dogs? this is our first time. Going to attempt crate training from beginning though am just going to melt when I hear her crying the first couple of nights. Must be awful to be taken away from their mummy and rest of the litter. Litter is 11 pups :(
www.321dogs.com/pictures/vizsla-puppy.jpg

Will stay in touch, hoping can get wifi in hotel. Good luck with you appointment/s, stay strong. Brownie x

Hi Kite Congratulations on your pregnancy. Glad to hear it is all going well. Don't worry - none of us here are self-medicating! Anyone taking steroids has been prescribed it by a specialist. Personally I am not going to query increasing the dose to 40mcg for me as my levels are pretty damn high. I realise the research and treatment is controversial though so I am sure it is not for everyone. Your IVF doctor sounds like he was great, but I have actually met plenty of doctors (have suffered for years from a thyroid disease) that I DO actually seem to know more than! I know that sounds trite but it's true. Not only GPs but endocrinologists too. Fortunately thyroid treatment is finally catching up with the research.

Willitbe am so sorry to hear that you are probably having a suspected miscarriage again. What is the plan going to be for you now?

I already have the 'at what stage to they attack the foetus' question prepared, which is good, and a question I think particularly fascinating. Something that would tally with your experiences of miscarriages getting earlier Brownie is that in Dr Beer's book he says that with subsequent pregnancies they do start to attack earlier.

The Puppy Pic gave me a little tug on the heartstrings! Soooo cute. I have never had a dog no, I can barely look after myself some days! But I do love them. When I grow up (am almost 37...) I might get a cat :)

Well, I haven't actually tested today for various reasons so might have a go tomorrow, which will be CD26. I am getting a bit crampy though so AF likely due.

Willitbe - I am so sorry to hear your news. I was really hoping this would be the one for you.

Digitalgirl - have you tried doing a low GI diet with the metformin too? I have been doing quite well with that (apart from tonight with my M&S operettas -fake ferrero rocher- and wine dinner as DH is away).

Brownie Gecko - I think they wean us off the treatment once the placenta is formed. I presume by then the baby is big enough to fend off the naughty killer cells? I don't know though.

Freelance - I hope Dr S had a large chunk of time set aside for you to ask our trillions of questions. After this you will have so much knowledge, you could set up a rival clinic! How did you get on today with it?

HI kiteflying - great to hear yours is going well on ony 10mg prednisiolone too and only for 30 days! Have you ever had NK cell tests?

www.fertilityzone.co.uk/index.php?page=Board&boardID=247

Am I allowed to put links in? This page shows a lot of very useful into.

Charlie that link is brilliant! There is so much info there. I recognise quite a bit of it from Dr Beer's book but there is also a lot there on intralipids and that is fab to read. I will get through it more tomorrow.

I had a brilliant interview with Mr S. He was great! It was a really warm interview and got a lot of information across. I had a professional cameraman with me who had offered to help when I was on a corporate shoot with him last week so it was all filmed really well. He had all the time we needed and it was nice and relaxed. SOme great info there too!

Off the top of my head here are a few things I remember. Am totally exhausted, my hormones/steroid taking has reached a bit of a peak today and I feel like I have rotten PMT - bloated, emotional, exhausted, shaky, clumsy, hungry... and a whole plethora of the other dwarves :)

Ok, here are a few things I remember. I do have a full interview on camera though for watching at some point!

-there is no set pattern to the way the foetus is attacks but he is a firm believer you need to be treated from conception
-NK cells can cause later losses if they are not treated from conception
-it is because of the above that they trust things enough to take you off the meds once the placenta takes over - the damage prevention happens at the start
-there is no set profile/age for women who are prone to them but thyroid problems, any family or personal history of any autoimmune disease and previous pregnancies seem to mean something

• NK cells cannot main, injure or disable - just kill
• NK Cell levels can fluctuate and are not always going to be high every day of the month - some are shed along with the womb lining with a period
• very high levels like mine are not good...but he can't totally rule me out of the game which is something I guess...

-steroids work pretty quickly and yes they might have a short term accumulative effect

Hey Freelance I'm really glad the interview went well. How does it work with documentary making? I presume you make the whole thing first then get a tv company interested? It's all very exciting. Thanks for sharing that info. It's great you managed to get answers to all the questions swirling round our heads.

We have had to start filming early as there have been medical appointments to film so we will have to work out those sorts of things as we go along! I just think there is not nearly enough info about miscarriage out there and I have a passion that this film needs to be made.

I got a BFN this morning! It's a bit of a relief to a certain extent as at least I can go off the steroids and don't have to start worrying about the next lot of scary things - having another miscarriage, further hardcore treatment etc. But of course it still means there is a major step that still needs to be taken before I can get on with things - namely getting bloody pregnant again. Next month maybe...

Hello Freelance just thought I would follow you!

Will have a read of the thread to catch up x

Yay, Georgie glad you have joined us.

Just following on from your other thread post, I was wondering if I might bump into anyone from these threads at Epsom yesterday! I left at 5pm so indeed our paths didn't cross. Do you have any children already? This is still my 'first' go. Am 37 in a couple of weeks.

Do have a good look through the thread, we are rapidly becoming Pred/immunotherapy experts here.

Here goes: Im 42, I had a DD age 3.5 and since then have had 4 mc's. 2 of them were MMC and I found that really difficult as had seen healthy heartbeat at 7 weeks but then around 9 weeks MC.

I have been on metformin for PCOS for 10 years, Mr S increased my dose to 1700mg a day, im on asprin, multivit/omega 3.

How do I feel - emotionally detached if I am honest. Feel like I am on a rollacoster and cant get off, yet I know the end is in sight. I have given myself to the end of this year to try and gert pregnant and keep the pregnacy then im giving up. I honestly think my age is a big issue.

MY NKC was 1.79 so lower than most of you girls, all i can do is just wait.

I did ask about alcohol and caffine and Mr S said that was fine -yeah!

I have taken my first prednisol today, I think I am ovulating but didnt want to risk missing it and waiting another month. If not successful this month I will do my clearblue fertility monitor again next month.

Got to dash will catch up soon xx

I have heard several people talk about that emotional detachment. I am sure it is natural. If you stayed emotional 'attached' as it were all the time you would go mad. Glad you asked about alcohol and caffeine and congratulations (of sorts...) on taking your first Pred. I noticed a few symptoms but really they are not that bad. Today I feel they have reached a stage when I am fed up with them but I am not sure whether this is because I also probably have rotten PMT (I think) and am feeling a bit odd anyway. I have made the decision however to actually take the Pred until my AF arrives, taking the risk that it might delay it.

How many days would you expect that to be? Mr S told me to take 10 but I was wondering if I should take a few extra as testing 6 days before I expect AF seems to early and might get negative that early. It's happened to me before negative then positive 2 days before so I'm bit confused?!

Well off to open a bottle of wine and try and get myself in a romantic mood!!!

Hello Georgiepie. great to see another one of us! That's good to hear the alcohol is not bad for us as I'm working my way through this bottle.

Emotionally detached sounds good to me. It's my strategy for the next time i get pregnant . Last two times i was far too excited but next time I am going to try not to think of it as a baby until after the NT scan. Maybe easier said than done though.

So will you be doing the intralipids too, Georgie? You are right on the cusp of 'very high'?

Freelance, I can understand your relief. At least you get another month's worth of steriods in and now we know they work cumulatively then you know it's all doing some good and the steriod taking this month hasn't been in vain at all. Having said all that, you never know, it might just still be too early, so I can see why you're going to continue until af arrives. Your cycles are normal anyway aren't they? so you don't need to worry bout it even if the steroids did lengthen them a little.

I am seeing my specialist tomorrow to see if I can get the intralipids over here and to see if she will be happy to monitor me when I'm on the prednisolone. Fingers crossed. I hope she is not a non believer in the whole NK cell theory. Not sure what to do if I won't be able to get the intralipids but no point worrying til I know one way or another, is there.

OOh he Georgie he didn't tell me to take it for any set period but the protocol that comes with very high cells says take it for a minimum of 2 weeks. I guess that means I really should take it for a further three days then to make it up to 14. If you test early am sure you will be in the same position as me - going mad thinking it might be a false negative and then wondering whether to test again after. But maybe you only need to be on them for 10 days, instead of my 14 with silly high levels?

Emotionally detached and drinking wine sound the way to go for all of us :) Oh and yes Charlie my cycles have been pretty normal I guess - they were a lot more unpredictable before mc but were usually 39-35 days and after mc have all been around 30 days. Three so far, including the wtf cycle. I am having intralipids (as soon as I bloody get pregnant!) and 40mcg of Pred as well as cyclogest. Hope you get on well with the specialist tomorrow! Let us all know how it goes.

PS Isn't it wonderful to be able to have conversations with people about Pred and intralipids and know that we can all relate.

Hello girls, just a quickie from me as on iPhone in Germany using wifi in trusty starbucks :). It is great we can all identify with each other re this condition/treatment. Feeling a wee bit blue today, finally got called by hospital after asking whether I should be taking Pred from conception and they confirmed twice that yes, only from day I find out I am preggers. :( we both feel a bit lost and confused as everyone else seems to be starting before that. We have decided not much we an do so have to put our faith in them or else we will go bonkers. I just want to throw everything including kitchen sink at this attempt and can't help but feel what if they are wrong. Will write proper post to you all to see how you are doing when I get back on Tues. X 19 days to go till we get our puppy :)

brownie if you read further up the thread you'll see a lady called prettyvacant didn't start her pred till 5 weeks pg - 3 weeks after conception. She had very high nk cells but is doing very well at the moment. Please don't feel disheartened. My acupuncturist said I'd probably be fine taking pred from bfp too - but we would follow Mr S's plan and see how the side effects pan out.

Hi freelance - thank you for signposting me over to this thread. I have seen Mr S now and had my results - my NK level is 2.8 and he has put me on the exact same protocol as you (starting vitamins etc for a couple of months then 25 steroids whilst ttc moving to 40 + the intralipids and including cyclogyest, in addition he has put me on thyroxine). Going to start trying next month as currently under Charing Cross as my last miscarriage was a partial molar. My brief history is
Two lovely seemingly healthy children 16 months apart but then my son very suddenly passed away at the age of 2 and a half. We have then had six miscarriages all between 6 and 8 weeks.
We were going to give up and then I just thought we'd try one last thing and arranged to meet Mr S ...
Saw my GP about something else this week but explained what I was going to be doing and she wasn't very impressed. Never mind - as someone has already said this isn't a protocol that will agree with everyone.

Morning all. Thanks for coming over and joining us Comedyworks - it's great to be able to add more people to our conversations. Digital and I actually met up yesterday to chat about this documentary we are going to try to film about our treatment and it was wonderful, on my 13th day of Pred when I was finally starting to feel like I was losing the plot, to be actually able to speak to a real live person who was going through exactly the same thing!

Sorry for your losses again, as I said on the other thread I cannot imagine how much heartache you must have been through, especially with the loss of your little boy.

Am so glad you have had results back and you are now getting treatment. How much thyroxine has he put you on? I am now on 125mcg but I started off years ago at just 50mcg. Every few years I seem to have a dip of thyroxine and gradually need to up the dose.

You are right, not everyone is going to be impressed with the treatment. But you know what? The short period of time we are hopefully going to be treated for is not actually going to do any harm, so it's annoying that GPs can't be more supportive. Mine is actually being supportive on this one but I have a feeling she is a bit in over her head and is just agreeing to anything I say at the moment

So Day 14 in the Prednisolone household... and I have to say that although the first week or more was fine (just a few dizzy spells and a bit hungry but it was interesting to observe rather than anything else) the last couple of days have not been good. The lack of sleep is finally getting to me. Maybe I am rather unique in that I work from home a lot and usually roll out of bed around 8.30am but my average wake up time since being in the Pred is about 6am and that has meant I haven't had nearly enough sleep. For the last couple of days I have been having quite tired spells and yesterday had a surge of energy in the morning that made me want to roar loudly and lift up a passing car...I just ran around the house like a tightly wound ball for a while.

I haven't tested for a couple of days but at 11DPO and 12DPO I got negative pregnancy tests so I am pretty sure that what I am going through now is a combination of Pred and 'enhanced' PMT'. Am on CD20 and 15DPO today but am not at ohm yet and don't have a stick to pee on. When I get home later I will pee on one and if it is a definite negative again I am pretty sure I am not going to take the Pred tomorrow and just wait hopefully for AF to arrive very shortly.

VERY much looking forward to two weeks without the steroids. But on the flip side, they have not been nearly as bad as they could have been and it has only been the last handful of days on them that they have got to me.