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!

Hi everyone just a quick question! I seem to have some lower back pain which is not worrying me but then it goes from my back to the front and I get cramps!

I have a bit of brown discharge (sorry TMI) but only in my liner not when I wipe!

Any thought? I was putting it down to a long day and lying in the horrible bed for my IVIG!

Thank you!!

Xx

Hi Tum sorry crossed post with you!

Try not to worry! I've been told by both Dr S and te NHS that 5 days either side they don't worry about! Try and say positive and calm! Can maybe Dr S fit you in any sooner? Or if you are there today even?

Sending positive thoughts your way!

Xx

Thanks team looks like we've both got little worries. I'm sure your cramps are the usual growing pains ones. Are you still on the extra progesterone? Maybe rest up and see how u are tomorrow, I'm sure it's ok, brown discharge can be quite normal. (I had a couple of fetching blobs of brown a week ago)x

Buzzy wonderful news, congratulations!

MrsP glad to hear it is going well and good luck for your scan. I felt better fairly quickly once I started to wean the pred, even though it's a bit scary to be 'flying solo' without the meds. I hope that's the same for you.

team and tum sorry you are worried. It makes such a difference what angle the measurements are taken at early on,if there is still a good HB and still within a few days of your dates I'm sure it's ok. team you take it easy!

Hi team how are you doing today?

I've woken up in a panic, my boobs have stopped hurting completely. This hasn't happened throughout the whole pregnancy. I am feeling really really worried. I can't believe I saw heartbeat yesterday and then they would just stop hurting. I now have a weekend of worry to endure until I can try to arrange another scan. Has anyone else had experience of this and it been ok?

Hi Tum I'm doing better this morning thanx I think it was just the fact it was a long day!

How are you feeling now? I know it's hard but try not to worry t

Hi Tum I'm doing better this morning thanx I think it was just the fact it was a long day!

How are you feeling now? I know it's hard but try not to worry too much! My friends preg symptoms came and went throughout!

Xx

Ladies I hope you're both ok, this preg lark with our history is so worrying isn't it.
Saw dr g today he suggested a lit booster would be good as it would last longer then just retest when preg.
Hubby's come away with more proxeed!
He suggested we try for 6 months. I need 3 lots of intralipids (1 every 4 weeks) not sure why I'm not having any for the remainder of the 6 months.
I'm having ivig when preg.
He didn't mention neopegen this time but he did at first meeting, wish I'd queried that.
I'm on clexane from day 7 ( never had that before it's always been on pos test?!)
Steroids have increased to 40 mg from day 7! As nk cells are high, no sleep!! Prof quenby recommended me to just have clexane and progesterone on positive test as something had caused high uterine cells but I guess that could of been the hydroxy or any other vit I was having!
I'm on progesterone too from after ovu that's new as that used to be after post test.
He's recommended I have dhea as amh is low.
I hope all this is ok to take with thyroxine!
All in all it sounds very rigorous!

Huge congratulations clabbage and buzzy!

MrsP I hope you're not feeling too exhausted; insomnia plus househunting = not a good combination! So glad to hear you can taper the pred soon

Thanks mel, team, luna - the draining of the cyst was really simple. In case anyone else ever needs to have this procedure done, don't worry, only very minor pain involved! Went along to St Helier's in the end as an outpatient and had it done without sedation or any anaesthetic. It took only a few minutes. The thing produced a phial and a half of clear fluid - very glad that's out of my body now!

team hope you're doing well.

Waves to all!

tum and team just saw your recent posts after I'd posted the above; thinking of you both...

tum I wouldn't worry, baby moving, a millimetre measurement out either way, and the dates go haywire... as Mr S said, for that reason they have an error margin of five days or so.

team hope you are still taking it easy!

mel do you mind me asking what your amh is?

I've a question for you all, especially ari, brown and any of clued-up ladies who have been supplementing. I'm still stumped about the whole dhea issue - to take or not to take. I asked Mr S about it and he says many of his patients swear by it, and though he doesn't believe it's of any benefit, I could take it if I wanted to. I asked if a blood test to check levels first would be a good idea and he said no, one could just take it. But I've read that it can mess up an otherwise happily functioning hormonal system if levels are already sufficient... so don't know quite what to do. What is a normal level? And what sort of amh would indicate that dhea might be helpful? I am 44 and have an amh of 6.1 pmol/l, FSH 6.8 and LH 5.7. Mr S felt that these are pretty good; should I be considering dhea? Any thoughts hugely appreciated!

Thank you for all your lovely congrats. buzzy massive congratulations to you too.

I will come back as soon as poss to answer some of your questions.

Hi Village .. the thing with DHEA is, if your DHEA levels are ok, adding extra in could indeed mess up your hormonal balance which in turn can cause havoc with things like ovulation. Having said that, I understand us ladies over 40 'tend' to have declining levels of DHEA. Personally I would get it tested - you might be able to persuade your GP to do this; if not I can tell you where you can have it tested via saliva test through the post (I have it as part of my adrenal testing). Having taken it myself I wouldn't do so without not only having my DHEA levels tested before taking it, and then check every so often while on it to make sure you're not going too high. But that's just me. :)

As it happens the last time I tested about 8 months ago mine flagged up as too low. Now I'm not TTC naturally anymore, but even do I don't want my oestrogen & testosterone levels messed around with, so I'm taking 7-keto instead, which should boost DHEA without being converted into either of these hormones. I've not experienced any of the side effects I did when I took microginised DHEA and it hasn't affected my cycle in any way - but, as I say, I'm not taking it to have an effect on my eggs.

Lots of luck in your decisions :). At least Mr S isn't complexly pooh-poohing the idea of taking DHEA now as he did when I asked him about taking it!

Drat, hit send too toon! clabbage and buzzy huge congrats to you both!

And again, aargh! So sorry for the typos too, on iPad. mel Have replied to you on your FF thread :)

village I tried 2-3 months of dhea and I did get pregnant last year but I don't know if that was down to it or not. You are not supposed to take dhea with letrozole as it reduces the effectiveness of it and I think you are on superov? I was told that most clinics don't rely on amh figures much now, it's only used as a guide to how the patient will respond to ivf. In your case as in mine its irrelevant as we are not doing ivf. My amh is 0.57 at the age of 41 yet I still do get pregnant naturally (I did last year anyway). I wouldn't worry too much about figures so long as your cycles are regular and not too long and you are ovulating. I have stopped taking dhea now as was worried i was doing more harm than good but that's only my opinion! I was keen to try it as it was another thing to cross off the list that I thought might help.

Even with all the tests in the world we will never know how many eggs we have left or the exact quality of them and it only takes one good one even if your stats are low. I still think a lot of it is down to luck in hunting the elusive egg.

Hi village of course not. In May 12 when mr s did it it was 1.22 I'm 39 soon. I think mr g said it was 2?! Dr g didn't redo it I don't think and I don't think docs have. When I mentioned it to rmc cons she said they don't go on that. Dr g just said not to waste a year trying! I guess being preg twice last year has helped. I'm worried about the dhea now!! He didn't suggest a dosage. He said my nk cells came out at 20.0 in October ( I had chemical in sept) which was high as the range for cd56 was under 12. When I had it done with in May 12 they were 1.68 so although they look a different way of calculating it appears to me they've gone up?!
Please can I have the dhea testing info?he said dhea doesn't affect nk cells which after my biopsy I was worried about!! I certainly don't want to ruin what I do have left!!

Just popping in to say hi, thinking of you all, back later to read down thread! Sick dd this week has prevented a cuppa and a catch up with you all. Catch up soon . X

Tum, I've never had aching boobs in my life when pregnant; I know that for you that's normal but try not to panic about something that fluctuates anyway - plus with pred masking symptoms. And I've been told several times that different sonographers can come up with different results, and lots of thing can affect the measurement process. It's so worrying though, I know; it's like a free floating anxiety that will attach itself to anything. Once that thing is resolved, it finds something else to alight upon.
Village, I'd give my right arm to have a hormone profile like yours! You could be in your twenties! Bet you're not blood group O. The Verisana test is about the cheapest way to check your natural levels (about 40). DHEA not only affects fertility but egg quality, so the question is, is egg quality an issue for you? Likely so, given your eggs' actual physical age, even though your other parameters of fertility are excellent. But it's tricky; as you say, as you don't want to mess anything up. Has anyone heard of anyone doing so? I suppose the danger is of creating a polycystic state, something that isn't a danger with someone like me. I think I would find out my natural levels and go from there. You might not need 75mg anyway; I take 10mg now.
Sue, I'd never heard the DHEA interferes with letrozole, or vice versa. I thought the whole idea of DHEA is to take alongside fertility treatments? You're not thinking of agnus castus?
By the way, did we ever come to a conclusion about whether superovulation + pred has led to any live babies?

Hey guys thanks so much for your comments, I really do appreciate them. My plan is I have a docs appointment on Tuesday (just a catch up) so I'm going to beg her to refer me for another scan. I know I shouldn't keep getting scanned as it doesn't do much for my anxiety but I have just got to know either way, sooner rather than later if anything has gone wrong.
After this I will go back to being scanned fortnightly. I shall keep you posted. Thank you once again for all of your reassuring comments they have made this weekend more bearable. Xx

Sounds like a good plan Tum. Good luck in Tuesday.

Tum excellent idea, I'd do the same. Ten to one there is absolutely nothing wrong, but then at least you will have peace of mind. Go for it! By the way, I've never ever had sore boobs in pregnancy either...

Thanks so much mel for the amh info, and thanks to all who replied about dhea. Sue, yes, I'm on superov - is dhea really contraindicated with letrozole? (I know agnus catus is, as brown says above). I will check... Thanks for your advice. I have a regular 28-day cycle and have always fallen pregnant easily in the past (2 pregnancies in the last year, aged 43, and the first was a 'slip'). I'm also worried about doing more harm than good!

Ari thank you too. What is 7-keto, and how do you take it? I like the idea of something that boosts dhea in a safe way.

brown your comment about my hormone profile has made my day! The honest answer is that I simply don't know if egg quality is an issue for me or not. I became nervous about it after my miscarriages as I kept being told that they must be due to age-related egg quality - but the foetal remains were never tested so this was pure speculation on the part of the medical professionals. I had DD at nearly 42, in between mcs. And I've since been diagnosed with high NK cells - so who knows if the mcs were due to that alone, or egg quality, or both? Oh yes, and to answer your question, I just did a quick scan of the birth list posted by free - having kittens had both SO and pred and produced a baby boy in 2013! Gives me hope!!

Hello to everyone I haven't mentioned by name x

brown there's lots of cancer sites that talk about it dhea and letrozole. I stumbled across it as my sister had a mammogram due to a lump last week (she's in the clear) and it was in some of the literature. It's to do with estrogen levels as they both fight against each other - letrozole reduces oestrogen in the body whilst dhea increases it!
I knew about agnus castus but I think this highlights how we should be careful of self medicating.
I then went onto google and found this which lists problems of using dhea. Wish I had known before I took it!
www.nlm.nih.gov/medlineplus/druginfo/natural/331.html

mel the docs will always work from the lowest amh figure unfortunately as they can fluctuate but won't start going back up. I wouldn't worry too much about it.

I think kittens might be the only super OV live birth success but correct me if I am wrong!

Thanks Sue and glad to hear your sister is in the clear. I had read that site before taking it and come to think of it, therefore, I must have read that bit about letrozole, but they are talking about it in reference to taking letrozole for cancer where you take it continuously, where obviously you wouldn't want anything that reduced its efficacy.
But as to taking letrozole with DHEA when used for superovulation, taking one thing that increases oestrogen and another that reduces it does indeed sound crazy, but I suppose it's no different from taking Clomid, which reduces oestrogen, and then using oestrogen pessaries for vaginal dryness, as I was prescribed on the NHS. Or, as I did for endometriosis, having implants giving me a 6-month medically induced menopause and then taking HRT. I produced 2 eggs and conceived on that combination, so the DHEA didn't prevent the letrozole working, in that case anyway.
I agree that self-medicating is not a good idea; my GP and NHS consultant know I'm taking it, and Penny advised me to continue. If I had any hormone-dependent cancers in my family, I certainly wouldn't take it, and I wouldn't take more than 10mg any more.

I've been given neopegen now to add to the mix!!