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.

Heard back from Mr S and he says hold off on the intralipids until I have had a scan next week! I guess he either a) doesn't hold out much hope either based on the measurements I gave him or b) doesn't think a week will make a huge amount of different with intralipids anyway. So either way it is just a week's worth of waiting again. He didn't mention about stopping the meds so I guess he must think there is still something going on at least.

I think I might go back on Weds rather than Thursday as surely something would have changed in a week. Hope it's bloody conclusive whatever the outcome! I think I might treat myself to a glass of wine this weekend and sod caution. Got a feeling soon I will be back on the gin/cocktails/meths anyway.

I am being proactive though as ever and have just chased down the referral to St Mary's that never arrived (first made on the 5th April) and have asked the docs receptionist to post it to them. So I am hopefully in running for more investigations for next time.

Now, does anyone have an opinion on ERPCs? I haven't had one before but my last natural mc was so long and drawn out and painful I really would want to go for that option this time. So frustrating to be put back a few months and have to do it all over again. It keeps crossing my mind that I am not getting any younger and still don't have kids.

Free so sorry for you. it must be driving you nuts all this waiting.

I have had to ERPC's and would have them 100% everytime. (Having also had 2 natural) Its a 3/4 day in hospital, lots of care and attention from the doctors and although you feel rough afterwards maybe for a day or so I personally like the feeling that I was sure everything had been removed and that my body could get back to normal asap. I only had heavy bleeding for 2 days and light bleeding for 3 days. I got my cycle back 6 weeks after op and everything thankfully went back to normal. Lets pray you will not need this.

xx

I've had 2 ERPCs now and one 'natural' MC and I have to say, the ERPCs were better for me by far. Relatively painless and over really quickly, with minimal bleeding afterwards. However, you need to be aware of the potential issues (although they didn't happen to me personally); apparently you could get an infection afterwards, it's possible they may not get all of the RPC (such a delightful term :( ) as they do the operation "blind", and apparently there is a theoretical risk that they may perforate the cervix. As I say, none of this happened to me, and not to the other ladies I've spoken to in the past 7 months who've had ERPCs - but they do warn you of the possibilities when you go for the procedure.

My first one I had because the 'natural' miscarriage I had over Christmas just dragged on and on and I wanted to draw a line under it and move on. And I'm also not getting any younger (but am definitely getting older) and time is not on my side. This second one I've just had I had because I didn't want to go through what I did with the first MC plus my body wasn't showing any signs of expelling anything itself, so again it was likely to be a long drawn-out process.

G-d forbid I go through a fourth miscarriage but if I do, I would have an ERPC again. I'm not sure what the risk of ensuing Asherman's Syndrome is, or problems with scarring from multiple ERPCs, but I think I'd take that risk for the minimal disruption/pain/trauma of a drawn-out miscarriage.

Just myy humble opinion, and I cross fingers, toes, eyes and ears that you aren't going to have to investigate this route any further due to getting a fabulous scan result in a week's time!

Can I ask please, what St Mary's would test/investigate that Mr S hasn't done for you? I'm still vaguely wondering which is the "best" specialist to go to, realising of course that it's often "best for an individual person" rather than a definitive "best".

That was three quarters of a day and not 3 0r 4 days!" Sorry.

x

free interesting to hear Mr S's response. And well done for doing something proactive with the St Mary's referal. You won't get the same 'love' there as you do from Mr S but at least you'll be in the system and know you'll be in more experienced hands than your local EPU.
It feels so wrong to be discussing ERPCs but here goes...
I've had both natural MCs and an ERPC. Luckily for me both experiences went 'well' as it seems my body is very good at miscarrying (ruthlessly efficient is the term I've used in the past). From a recovery point of view I found the natural MC was much easier physically as I felt so horribly drowsy after the ERPC. But I would probably opt for an ERPC again next time (actually hoping there isn't a next time), to ensure that we could get the pregnancy genetically tested for chromosome abnormalities. I still bled for a couple of weeks after the ERPC, still took my body the same length of time to ovulate, but i did manage to avoid the horrendous cramping/passing of the sac with the ERPC so that is one plus point.
Aside from the reaction to GA, the other downside of an ERPC is the potential for the procedure to damage your uterus. This is a very low risk. But you would want to make sure that they perform the op using an ultrasound. The surgeon I spoke to was surprised that I asked and seemed to imply that it was routine to do this via u/s - but I've heard others on MN say otherwise.
Only you can make the decision, but I think given your history I would be tempted to opt for an ERPC.

Thanks both! I think I will definitely go down the ERPC route this time if I have to.

It's hard to say about the specialists Arian. I asked to be referred to both but only actively pursued the Mr S one when I knew both referrals had gone AWOL. I have a history of thyroid problems and I knew this was autoimmune so what I had read about NK cells rang alarm bells to me. Luckily I did really as I have some of the highest levels the clinic sees - probably not helping my current situation although he says there are no figures available to predict success based on actual levels of NK cells. St Mary's to me didn't seem to offer much, but now I know it might be happening again I just want to get everything covered. Digi is seeing both and some of the other ladies on the Recurrent Buns thread are too I think.

The trouble with this is that we all seem to have had had to become our own experts, working out who is best for us and why. I just wish someone would help me with it overall, I as I am worried I am missing something. But that support is mainly garnered here through other people who have been through it, not the medical profession unfortunately who only seem to know their own area.

free you know it goes without saying that I hope you don't have to

ari I think Dr S covers a lot more than St Mary's. And I've heard nothing but good feedback from everyone who's been to see him and I couldn't say the same of those who've been to St Mary's. If you read further up the thread you'll see I decided to see St Mary's to get the TEG test which I'm not sure Dr S does - but to be honest he prescribes aspirin anyway and St Mary's would only up my dose if it turns out that pregnancy does affect my TEG result.

I plucked up the courage to email Dr S's office with my news and they said I could pencil in a scan from the 10th Sep when he's back (I didn't see the point in paying someone else to do it if I can get them free at St M's). Am relieved that it's quite far away. I want to put it off for as long as possible as it helps maintain this general denial. Still no news from St Mary's.

Hello, how is everyone? All necking a nice amount of drugs :) Digi how are you feeling? Just trying to ignore it all...? Difficult to ignore it all and ttc and be early updiffed casually when you have to bloody know exactly when you ovulate to take meds and then exactly the say you get pregnant to take more! I wish we could also just casually get pregnant and not have to think about it until we got to, say, 8 weeks or more. BTW digi the first scan is a rather eye watering £350 with Mr S. Then after it goes down to £250 or less, I forget.

There have been more developments with me, I have had some brown stuff. today. I know spotting is quite common but I think in the light of my small sac/not growing situation this is my body starting to do what it knows it needs to do. I found out when I went to the loo in a museum earlier! Shed a bit of a tear when I told DH and the folks but other than that am ok.

Just a bit of dark discharge at the mo but am feeling slightly dizzy so I know it might be on its way. If it gets worse I will go to A&E in tomorrow (am away for the weekend. Also this time I REALLY think I want an ERPC so I hope it doesn't all happen too quickly for that. Have I told you my possible theory about ERPCs? Remember Mr S and some research I found both suggested that NK cells are shed along with the lining during a period and are always lower just after menstruation? I was thinking surely an ERPC would also help clear out a few cells...? Amateur medicine I know. And also this time I would also like to see if I can get the 'products' tested.

Last week I also got my referral to St Mary's (initially sent in April but never received) re-sent so that also gives me another avenue to look forward to.

Hi Free sorry about the brown spotting. It may be nothing, just old blood? I do realise though that you seem prepared for the worse, i guess its yours (as it would also be mine) way of dealing with things. Its horrible when you see it and panic. Last time i had brown spotting from 5 weeks to 9 weeks.

Im not sure about ERPC and NK cell reduction, that would seem to make sense. I have had 2 ERPC's and as i mentioned before it was just over so quickly and i recovered very easily. Even on an emotional side. I only realised I had NK cells since seeing Mr S. Maybe he would test you again for your levels?

Well i am on day 10 of the pred, will do a pregnancy test tomorrow or Wednesday but I must admit I dont feel pregnant at all. I mentioned to my DH last night that i didnt think it had worked this month and he looked sad. We go away in 2 weeks for 2 weeks holiday with our DD so maybe if were both relaxed and you always feel more in the mood for sex when your away who knows! Also at least i can go and enjoy my holiday and drink and eat what I please!

xx

Free how are you today? Anymore spotting? Are you going to wait till Wednesday for a rescan or do you think you'll pop in sooner? It might be an idea to get your HCG levels tested - in case the scan is still inconclusive. I had this done during my second mc, they scanned me and thought they saw something about 4-5 weeks in size (I was supposed to be 6-7 weeks), which tallied up with the HCG levels taken on the same day. Two days later (after much more bleeding), the HCG level had halved (they're supposed to double), so it was pretty obvious what had happened.
I know you're weighing up your options here. I just hope you get an answer now one way or t'other. Thinking of you and DH.

georgie I think I remember posting something along the lines of 'don't feel in the slightest bit pregnant' - as Free said, the pred can mask symptoms. Fingers crossed for you.

Still no word from St M. Feel a bit silly for recommending you chase your referall free - I can't believe they've not called me back after I left so many messages last week. Beginning to think I might just wait till my scan with Mr S on the 10th September when I'll be 8+5. I've got two weddings the weekend before and I think I'd rather not know if it's gone wrong before then as I'll just spend the entire time trying not to cry. Obviously, if anything happens before then I'll have to rock up at St Mary's EPU or go to my local one.
Still trying to ignore my status, although had some cramping this morning which didn't help matters. Seems to have subsided for now so am back in denial. DH and I aren't really talking about it, every day he asks how I'm feeling - I say fine, that's the extent of it. Which suits me.

Brown sludge is the best way of describing it today, so it is definitely moving onwards so to speak. And a definite premenstrual feeling. A bit dizzy, wanting to eat quite a bit and the odd stirring down there. Funnily enough this is the time of my second period (LMP being 13th June) so that is actually quite comforting that my body seems to know what is is doing - even though I am on the meds this time.

I did ask for an HCG test last Friday as an aside to my thyroid tests, but just called the docs and the receptionist said the result was 'no action taken'. What the hell does that mean? I think it means they didn't bloody test. They are always doing this with thyroid, really annoying. Have a docs appointment for Weds so will see what she says.

Someone pointed out to me that they might say whatever it is is actually too small for an ERPC! Hope not as I would like to have it tested I think this time, just to double check. Thanks for the info about your ERPC's Georgie. It definitely seems to be the easiest option, as long as it doesn't go wrong of course. I am not sure whether it would be worth having another NK cells test because he only checks them in the blood anyway, not uterine ones.

How irritating about the St Mary's thing digi. But yes I guess you could wait until your appointment with Mr S. I have one with him on the 9th Sept so I should definitely know what I am doing by then. I wonder if he will tell me to wait to try again or what. You seem to be perfecting the 'trying to ignore it all' stance but I am aware how difficult it can be. Hard to ignore something when you're taking pills every few hours and mentalling over every symptom or no symptom. Now I think back I definitely DID have a few symptoms up until the last week or so. Now I just have a bit protruding belly which is only half due to over eating. It's like I can feel my uterus having lifted up - probably because it is my 4th pregnancy my body seems to adapt quickly to it. Wonder how the hell am going to lose that!

Have I told you about my next theory? Been doing a bit of online research into IVIG (not intralipids obviously but it seems to do the same job). It seems Dr Beer's lot seem to think that a course of IVIG BEFORE conception actually seems to make things better for immunology patients. I am guessing this is with people who are having IVF as otherwise it's an expensive option to have intralipids when you don't know whether you are definitely going ot conceive, but either way I think I will bring it up next time with Mr S: is it is a good idea to have an intralipids session BEFORE trying to conceive, just to make sure?

Here's a bit of research I found:

www.rialab.com/pdf/cair_ivig.pdf

Hi freelance, I'm really sorry to hear of your situation. It sounds like you have a gut feeling about how this is all going to turn out, but obviously I hope you are proven wrong.

All of my MCs have been MMCs and have always been a case of wait and see with regards to viability. I have always been told they won't do an HCG test. I always read of others having this test on various threads on here and wonder how come they get theirs tested. I had a similar experience to you last time, in that they saw something which could have been growth on the scan and refused to do and ERPC until they knew for sure there had been no change after a week. I guess it's to cover them for the eventuality of mistakenly removing a viable pregnancy. All 3 of my miscarriages last year measured about 5 weeks or less. The last one actually didn't even have a fetal pole and still they gave me and ERPC for all of them. My one piece of advise is not to have it done under local anesthetic as I made this mistake and found it really painful (physically) and upsetting.

Not much to tell here. I seem to have ovulated a bit later than normal so didn't really miss my window of opportunity by being away. Have been putting in a fairly stirling effort and will continue to do so for a little longer in case of delayed ovulation. Bloody Prednisolone is making me so clumsy. I'm dropping things left right and centre! Going to have Day 21 bloods taken this week so see if there's a reason my periods are so short and light. Fingers crossed I'm not drying up!

free Sorry to hear your ongoing issues with sludge ... if I could offer just a teensy bit of hope though, I have heard of women having slight bleeding/cramps etc around the time their AF would have been due, in the first trimester especially. So it's a possibility?? As for ERPC, my first one was done when baby only made it to approx 6 weeks, so I don't think it matters what size it is. I've never been offered blood tests to measure HCG, but that could just be down to the cr@ppy NHS care around here :(

Fingers crossed for your peace of mind as soon as possible!

It's very useful to have you all here to talk to and offer advice. I know what you mean Ari about people having bleeds etc but I think in my case, it is compounded by the inconclusive scans. Good to hear you can still have an ERPC this stage though. I hope I do get one, but just working out I probably don't have time to go to Epu until thurs, so I hope it doesn't all come out naturally before then. Last time it didn't come out until 13 weeks but had been a mmc measuring 7 weeks. Kittens there really does seem to be a traceable pattern with your experience and mine this time and past experiences for Digi too. Don't know why I didn't really have any faith in the treatment on this pregnancy though, maybe it's because of my extremely high cell count. Or maybe just that anyone with rmc just can't trust that it's not going to happen again. I keep thinking of that girl I met when I was doing the intralipids. The one who's first question was whether I wanted a c section or natural delivery. Oh to have that confidence! Maybe next time.

Hi everyone. Freelance - sorry to hear about all this. Being in limbo is very draining. I hope if it does end soon, that at least you can have some control over how it happens. How are you feeling? I note you say you weren't really confident in the treatment. Do you think you would still try it next time? Try it slightly differently?

Digi- so pleased for your Bfp!

I'm still not ttc. I'm going to aim for end of sept providing I don't have spotting for the entire 2 weeks after ovulation like last month. I've been experimenting with vit b complex to see if that makes any difference.

Hi Cheerful, that spotting must be really irritating. I reckon I will probably be ttc again at the end of Sept too, just have to work it out.

Just a quickie as doing a bit more research and came across THIS NK CELLS article I hadn't seen before in the Daily Mail

Including this interesting quote from Prof Quenby:

'My research would seem to indicate that the uterine NK cells make the lining of the womb produce an abundance of blood vessels. That sounds like a good thing but, in the first weeks of pregnancy, you need to be short of oxygen to increase the chance of the pregnancy going full-term. If you have too many NK cells, you have too many blood vessels producing too much oxygen and that's why you miscarry.

Just thought that was interesting, nothing that helps us really but another NK cell treatment success story I guess.

Sorry you're having a bad time Freelance . Thinking (if it comes to that) might be good to have erpc to see if they can do a test? I've only had one tested, which found a trisomy, and I do find it easier to accept that loss somehow - obviously not at the time it happened!
Was prof Quenby's research ever published? I remember my rmc specialist telling me it had been "discredited" (her words) but I've never seen the actual study.

I think it's still ongoing to a certain extent iggii but that some evidence seemed to be suggesting that treatment worked for some people. Not sure where I got this from, it's all a mass of over-googled info somewhere in the recesses of my brain! Sludgy is going a bit 'red wine' now so at least it is starting to happen. Am busy planning a holiday :)

Hey, doesn't it freak you out sometimes being on these boards? Everyone seems to always be having more bloody miscarriages! I like reading the grads threads too just to give us a more positive slant. Hope I am not freaking any of you out either

Actually Iggii you are the closest I know to someone who has had a miscarriage whilst being treated for NK cells. Am I right in remembering you had started the Pred but were already pregnant last time? What did Mr S say to you about waiting/not waiting to start again?

I just wrote a post on the Baby Centre immunology forum asking similar. Haven't been on there before but there seem to be a lot of people under Mr S so thought it was worth a try.

Let me think.. I got a bfp 10 dpo, and at that point started the steroids and progesterone.
I think it barely got going tbh, and (when I knew my hcg levels had dropped from blood test) when I stopped the progesterone I started to bleed the next day. I think that was all that was holding it in, so to speak.
I was advised to wait one month - in actual fact have waited two, as didn't want to be worrying about it all while on holiday. Have just been on amazon ordering the latest batch of first responses!
My two months off gave me an inkling of what life will be like when I finally stop trying - not waking early for temping, not worrying about whether a night out will be a "drinking day" or not, having as much friggin caffeine as I want.
We have all been on a long road and I like to think there will be some peace at the end of it for us, even if we do not get what we want most

Thanks Iggii. You have also just reminded me that I am using progesterone suppositories and I am not sure what to do about those tonight considering there's blood. Seems silly to keep taking the meds but half of me is reluctant to stop before I get proper confirmation.

I am really glad you had an enjoyable couple of months, I think it must have been quite restorative. A drinking day sounds rather appealing right now too - one that starts at an early lunch... I do hope it works out well for you. But in the meantime, yes stock on up sticks, temps and all the paraphernalia that goes with the whole TTC thing and try to enjoy it!

Well got another BFN this morning. We did do everything right this month but still no joy. Oh well at least we can go on holiday and relax. Were only trying 1 more month and then are giving up TTC completely. Were both 42 and just reached that stage when we know we have to move on and be happy for what we do have in our life.

xx

Sorry for the bfn georgie I know that feeling all too well. I hope it happens for you on holiday.

freelance have you emailed Mr S re the bleeding? I remember he suggested to iggi to stop the aspirin when she started bleeding. Are you in any pain? Have you called the EPU and mentioned the bleeding and possibly booking in for an ERPC so you can get tested. You need to press that this is possibly your third MC so they will take it seriously - some EPU's don't like to take any action if it's only your first or second.

iggi glad to hear you've enjoyed your two months off. TTC's like a full-time job sometimes.

Well after a pretty rough day yesterday (lots of horrible cramping) I'm feeling a bit better (ie nothing) today so Operation Denial is back on track. Managed to get an appt for my TEG test tomorrow, so at least I can tick that off soon.

Hi Georgie, sorry too for the BFN. Must be really annoying when you know you have done everything you can. It's great that you have the holiday to look forward to though and can go off and enjoy yourself and then start worrying about trying again. Although do make sure it is a definite BFN as you never know. Are you really going to stop trying soon? I have forgotten whether you have a child already Georgie, sorry.

The cramping must be worrying Digi but you do hear of cramping being a totally normal symptom too. I don't feel able to advise anything unfortunately, being that I don't have any successful pregnancy experiences to refer to! Did you have any cramping when you were pregnant with DS? Glad you are getting nothing today I guess. Also glad you finally got that appointment sorted, be interesting to see if your TEG changes during pregnancy.

Well, I am fresh out of four hours at EPU and they can confirm there had been no growth and that I will be booked in for an ERPC. Final measurements were around the 5.4 mark so this one never really got off the starter block. Not sure if any of you have any insight there based on your own experience. Last mc was at 12 weeks but had died at 7.3, this one (forgetting the scans) became apparent at 9 weeks (with the bleeding) but seemingly measured 5.4. Not great when on the treatment! 'Operation Detached' however is a bit easier this time as there wasn't even a foetus to measure.

So the next thing with me is what to do next. Good point Digi about going off the aspirin. I haven't taken it today and will definitely ask. In fact I might refrain from taking it until I hear back from them. Will stop cyclogest too and also drop down gradually with the Pred. Only took 25mg today so might do that for a couple of more days and then come off it. Unless I get any other advice from Louise in Mr S' absence.

My next appointment with him is on 9th Sept so I guess I will need to know when I can start trying again, whether it is worth me having a pre-conception intralipids and anything else that might spring to mind to do differently this time.

The only thing is it is now 5 months since my last miscarriage and I really just hate the feeling of having wasted time - can you relate to that? I have no children and I am already 37 and I am aware that time is not on my side, especially given the diagnosis.

In case anyone is interested I have heard back from Louise and she says ?after a miscarriage it is beneficial to wait for a clear cycle, so two periods as the incidence of further miscarriage is increased if fall within the first month?.

So, basically, wait until one cycle and also to speak to him on the 9th Sept. I have just asked about drug reduction so not sure about that yet.