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!

Scrap that I've just found my cytotoxicity results!

Hi, I have also had IVIG for my last two cycles of IVF but sadly without any success. My experience of it is similar to Breezy's. I'm not sure where she had hers administered but I had mine at home with healthcare at home. It was lovely to be at home and both if the nurses that came have been brilliant, as I was very nervous about it all. If you have a high dose (I assume that means a few bottles) I takes between 4-5 hours for the full infusion. They have to drip it in slowly so that you don't react to it. I have just finished tapering off the pred from my last ivf and have come out in a full on rash - along with a cold. Am terrified I have caught something hideous from the IVIG but hoping it is just because I am run down after all the treatment. Anyone else had a rash from the pred?

Thanks Ari. I'm terrified at times about starting the whole rollercoaster of ttc and possibly miscarrying yet again and the hormonal fiddling doesn't help. It's good to have this thread. The fact that others are struggling with the same issues, overcoming them and going on to have healthy pregnancies is a real consolation. Thanks, ladies

Team I'm pretty sure Louise would advise to count the next day as day one - but on the other hand she did say not to worry to much about twelve hours here or there! If you're unsure I'd email her. She's away right now but she does check mail - or Cheryl could get the message through.

Belly I got a rash too as a reaction to Pred. Apparently it can give you skin sensitivity which I didn't know so having a facial and massage (which was supposed to relax me) ended up being a disaster. Took a week to clear, but my skin peeled beforehand. It was not attractive but hasn't happened since.

Re IVIG - my tests with Mr S also showed that my blood reacted better with IVIG but due to the £2,000 cost per infusion, Mr S said that I would achieve similar results with a combo of intralipids and Pred. Haven't had a chance to try this theory out yet.

Did a PT today after 10 days on Pred and my first SO cycle and got a BFN. In my head I'm thinking cycle 3 or 4 may be my golden cycles once all the meds have had a good chance to settle in. Physically and emotionally I feel fine - positive and well although taking 13 tablets every morning and another 2 in the evening is difficult.

Good luck with your first SO cycle Village.

Thanks Luna. I'm having the follicle scan on Monday in London - but I'm also not counting on this cycle to be the lucky one. Stay positive for the next cycle!

Regarding rashes: I'm not on pred yet, but was hoping the hydroxy might have an effect on the eczema on my arm. So far nothing doing. I've had a patch there ever since my second miscarriage years ago; it plays up during the second half of my cycle and subsides again before ovulation. Wonder what the pred will do to it?

Waves to everyone else!

Thanks for that belly are you under Dr S? How so I go about having the IVIG at home? Cause I found the clinic quite uncomfortable!

Village thank you. Yea dr S told me she was away! Typical when you need to ask something! Hope Monday is all good for you!

Luna that's exactly why we did the combo too! But I have decided that I can't risk another mc so we are going the whole hog! IVIG, intralipids, prendisolone etc etc!

I'm taking my first lot of letrozole today! Bit apprehensive as this is my first period since MC and it has been a light one!

Waves to everyone!
Xx

Good luck with this next phase Team. I am completely with you regarding the "whole hog" approach but unfortunately my DH isn't quite with me. I suspect he is trying to be the voice of logic and reason. As we have only just started treatment on Mr S's programme he feels we should follow the course recommended so far. I on the other hand am the one that goes through these repeated MCs so my attitude is, if IVIG shows better results why not try the best approach.

I guess we are both correct and I will have to at least give this initial programme a chance but it is very very hard.

Waves to all and I hope everyone has a lovely weekend

village If you're anything like me,the pred will get rid of your eczema. Eczema is an auto-immune condition; my skin is always much better when I'm on pred (but never mind what it does to my sleep!!).

Ari apologies if you have already heard/tried this, but when I went to see Prof Q she told me to take the Pred as early as I could every morning, ideally around 6:00 - 6:30am. It's a pain to have to wake so early if you don't really have to (especially at the weekend) but it has worked brilliantly. I have not suffered at all with my sleep - wondered if the same approach might help you

Thanks luna - yes, I always take pred very first thing but it makes no difference, I'm always wiiiiiiide awake around 3am, and disturbed sleep thereafter.

I do wonder about prednisolone, you know, and its long-term side effects. I have been tested and shown to be in stage 3 adrenal fatigue, and one of the things I have is high late-night cortisol, which affects your sleep (I still wake up at 3am now even though I'm no longer on prednisolone). Now one of the harder-hitting treatments for adrenal problems is hydrocortisone, a corticosteroid very similar to prednisolone. I know for definite that before I started taking prednisolone that I didn't have these adrenal issues; my sleep used to be blissfully serene all night long without interruption (unless my DD woke up, of course). Except for the past 5 months I have been taking prednisolone regularly either via Mr S or since April this year as part of IVF with Serum, for almost 2 years in total. I have to ask myself whether taking then stopping then taking then stopping prednisolone has itself put a strain on my adrenals. I don't know, but I do wonder. Just musings, really.

Hi Team I used to go to Dr S but now I am under George Ndukwe at Zita West. They faxed a prescription to Healthcare at home and then Healthcare at home contact you to arrange your infusion. It was also just over £1,400 which, although still eye watering, is cheaper than Dr S (but may vary according to how much ivig you need). Worth seeing if Dr S will go that route, I reckon.

Ari sadly I think your suspicions might be right. A friend of mine has had to take Pred for a chronic health condition off and on for a long period of time and as a result has severe adrenal fatigue. How are you being treated for it?

Ari, you've given me hope that this dratted eczema might go away for a bit - I'm particularly scabby at the moment - though in some ways of course it's the least of my worries! Really sorry to hear about your insomnia.

I can get bad insomnia too and I'm not even on pred yet - so Luna, thanks for the tip from Dr Q about taking it very early in the morning; I'll be trying that!

Thanks for the good wishes Team, and I'm really pleased for you that you're throwing the book (or the hog?) at the next pregnancy - that sounds very promising! Go for it!

Ohmygog ohmygod I did another PT as Dr S recommended even though the 10 day one was negative and this one was positive - aahhhh!!! I have been off the Pred for two days but didn't want to go straight in with a 40mg dose so have taken 25mg again today and will up it tomorrow. Am panicking - don't think I can go through an 8th MC and know am supposed to be positive but am not. Don't even have the stupid Clexane yet so will see if I can get a private prescription sorted. Have also texted Louise for advice and am trying to remember how to be calm and serene. Advice please...........

Congratulations Luna ! I know it's horrid when a BFP brings more feelings of dread than happiness, and can relate to the panic about getting onto treatment immediately. Hope you can get hold of your clexane quickly, and sending masses of luck your way.

luna congrats! Try not to panic! You are fine starting on 40mg pred straight away plus are you taking low dose aspirin? If not maybe you can take it until you can get the clexane? They are both blood thinners so do a similar thing.
I am never positive when I get a bfp as am so used to it failing so I think its natural to feel as you do. Time will drag for you now but at least its the first step achieved!

ari I read that if you come off preds too fast it can cause adrenal problems. I wouldn't be surprised if some of the long timers on here have damaged our bodies. For that reason I am only taking them at bfp and not from ovulation. They mess up my cycles anyway making it harder to get pregnant.

Thanks Baking and Sue I got the Clexane so first injection tonight following the advice on previous pages. I stuck with the 25mg Sue as couldn't reach anyone for advice and will take 40mg tomorrow. An already on the aspirin.
Has anyone ever noticed or experienced a physical difference between the higher dosage? Am at a black tie wedding so a little nervous of experiencing any side effects whilst being away.
Channelling calm and serene and taking deep breathes every time I feel myself panicking. Hope I get an appointment for the intralipids quickly.

Waves to you all

Good luck Luna. Glad you managed to get hold of the clexane. Sending lots of positive vibes your way.

Fab, Luna, and don't worry. Louise told me that the pred will stay in your system for a few days so it doesn't matter if you stop at 10dpo and then subsequently get a positive.
I'm starting to wonder if pred is messing up my cycles too. Last cycle I missed my surge, kind of, and this cycle I've had lots of contradictory symptoms: negative opks but a three-day dip in temperature and today a sharp rise as if I had ovulated yesterday on day 13. Yet no Mittelschmerz. Or maybe it's just being old and the whole system is winding down ...

brown the preds definitely affect my cycle. At one point in early 2012 I stopped ovulating altogether on them. I tried dropping the days from 14 to 10 at ovulation but it still didn't work. I hate the weight gain and hair breakage on them too!

Luna congratulations, how wonderful!! Just wanted to echo what brown wrote - I also asked Louise: what if you stop the pred at 10dpo and then discover you're pregnant after all, and she said if that happens don't stress; pred has a very long half life and it takes days to leave your system. You will be covered! Best of luck in getting the intralipids set up and many congrats again.

luna congratulations! What brilliant news! Wishing you all the best!

belly thank you I'm seeing him for my mud cycle scan in a weeks time so I will ask him! I find the clinic so .... Clinical lol! You would have thought they would have a comfy room with tv etc.

Xx

Hello all, hope you don't mind if I join? I've been ttc since Sep 2012 and had a mmc in Dec last year at 8 weeks. Since then nothing! Had some initial tests done which showed high fsh but then had amh test done which was high too which is very confusing. Antral follicle count was v good. I've had a failed iui and I'm probably due to start egg sharing ivf in the new year at Lister in London.

My mum has had some immune problems so I paid for immunology blood tests at the Lister. My first nk cell results were crazily high (60%) and the clinic said there must have been an error at the lab so I had them retested 4 weeks later. I just had the results back and they are 23% so they want to start me on treatment when I begin IVF. They offered IVIG which had reduced my nk cells to 7% in the lab and pred which reduced it to 13%. As IVIG is so expensive they are going to try me on pred first.

I'm so confused about the whole thing. They haven't offer to test the nk cells in my uterus and I've read that these can be very different from the nk cells in your blood? Also, I've read some stuff about side effects of being on pred. I don't know if nk cells is 'my issue' or if it's my fsh or the fact I have low progesterone levels. I've no idea how high 23% is in comparison to normal levels of blood nk cells? Has anyone read if anything you can do yourself to help reduce nk cells?

Apologies for the waffle, just a bit overwhelmed with it all. Good luck with all your treatment and congrats to those who have been successful. baking not sure if you remember me from the mc thread but I saw you were pg and just wanted to say a huge congratulations to you!

luna a cautious congrats :)

hello to everyone else

Thank you yorkie
I saw Prof Quenby and had a uterine biopsy and my NK cells were 16% which was "high" but not "very high". I don't know how that compares to blood levels or indeed if they are comparable. It seemed to be one of the criticisms of immune testing when I was looking into it that nobody really knows what blood levels may mean for a pregnancy.
I was on 20mg pred from BFP, 400mg progesgterone twice daily from CD21 (then test day 28, stop if BFN, continue until 12 weeks if BFP) and 20mg clexane from an early scan showing pregnancy in the right place. The clexane is not for a clotting disorder, it's supposed to be cytoprotective for placental cells.

I think you are right to be concerned re side effects from the pred. I had bad insomnia, very hungry and thirsty (put on quite a bit of weight despite being careful about what I ate) and I'm sure it mucked with my blood sugar control. I had a couple of fainting episodes early on. All of those were minor things and I gladly accept them since it has worked (so far) for me. Some protocols have you on pred all the time which if it takes a long time to conceive could be months and months, then I think there is an issue with longer term effects on your adrenal glands. If you are having IVF then I guess all that is more controlled and you will take it for each attempt but not for months on end.