Immune/NK issues - aka Pred Thread no. 22!

@DaniMERL that is such good news and also so good to hear that you come out of the pred fog. I was quite upset about it week 8-9 ish. I'm on so many drugs (pred, progesterone, oestrogen, clexane) and they have really messed up my body. I looked around 4 months pregnant (I'm quite petite so it shows on me very easily) which was upsetting at a time when you're so anxious and you don't want people speculating. I'm coming off the oestrogen now and I've noticed a difference; 2 more weeks before I come off the others. Thank you for sharing your positive story (and about the hairy face! I look like chewbacca!!)

I remain very grateful every day but I would just like the chance to do this on my own terms :-)

@DaniMERL that is such good news and also so good to hear that you come out of the pred fog. I was quite upset about it week 8-9 ish. I'm on so many drugs (pred, progesterone, oestrogen, clexane) and they have really messed up my body. I looked around 4 months pregnant (I'm quite petite so it shows on me very easily) which was upsetting at a time when you're so anxious and you don't want people speculating. I'm coming off the oestrogen now and I've noticed a difference; 2 more weeks before I come off the others. Thank you for sharing your positive story (and about the hairy face! I look like chewbacca!!)

I remain very grateful every day but I would just like the chance to do this on my own terms :-)

PS. I had a slightly early 20 week nhs scan on Friday and all seems good.

Friends have started commenting how much better I now look and I think what they mean is that I have returned to normal after the affects of the pred. I’m not sure I had a moonface as such but it just looked a bit odd and not like me. I guess I bloated up all over top. I still have the facial hair from ear-chin but at least it’s very blonde! So weird

@Wishing5tar I had quite bad headaches when I started the Hydroxy but not sure if they started before this? I even went to the opticians to check my eyes weren’t causing it. It seemed to wear off anyway.
I break is annoying but you need to let this pregnancy resolve (I hated it when people said this to me) and you are ahead of the game getting the Hydroxy so fast. I should have got an appointment with Mr S sooner but was so used to every doctor just saying the above to me.
And I actually really enjoyed the one cycle of not tracking what day it was, TTC and the taking all the meds. The month off did me good.

Hi @Belarita I suffer with low mood and anxiety. There is a book called Mindfulness I took a tip from which I find helps when you can't sleep. You need to empty your mind, like literally try and think of nothing at all, and hold it for one minute. every time a thought creeps in you push it out, and restart the clock of the one minute. It sounds silly, but when you are worrying it is actually very difficult to do, I quite often find I fall asleep before I can keep one minute.
I am also doing online CBT they teach you to break your feelings down into 4 components, the emotion, thoughts, physical, behaviour. The idea is broken down it is easier to deal with. They also say you should focus on the present, like right this second, you are at home, you have warmth and shelter and food, and someone who loves you nearby. I can't say I've really bought into it yet but I have noticed my mood has improved the last couple of weeks, more of a constant dull sadness than the usual peaks and troughs of hope and despair.
Are you also taking cyclogest? That's progesterone so could be contributing to the crash. I wonder if you can space out stopping them a bit so it doesn't all come at once? Like stop the cyclogest on day 10 but take a half dose of pred for an extra day or 2. Maybe the nurses can suggest something without you having to go in.

@KittyKatSmile I have an initial four cycles worth of meds to TTC on before I'm supposed to go back for a consultation with Mr S. My migraines are often triggered by major chemical and hormonal changes in my body (I often get one before my period at that point where your oestrogen and progesterone drop off a cliff). I wonder if the residual effects of the pred masked that and then the pred withdrawal supercharged it today. I'll be more prepared for that and all the other symptoms next time but you're right, I'll keep in mind to go see him sooner if its just not bearable. xx

@Belarita I really have no tips on dealing with the Beast other than maybe setting a timeframe you'll stay on the pred before going back and asking him to change your meds. I regret not having done that, especially as I suffered so long with the Beast essentially for nothing. Hope your migraine meds kick in soon xx

Perfect timing @KittyKatSmile. After an expected BFN on Wednesday I came off the pred and today I have had the mother of all migraines today and have been crying on the bathroom floor not sure whether to throw up or attempt to remove part of my head. Such fun! I was massively optimistic and jumping the gun the other week in claiming I had no Pred symptoms. First few days I felt fantastic and then after about five days it tipped over into feeling horribly manic, anxious and shaky. The energy surges were horrendous and I had real trouble sleeping. Then coming off after ten days I've felt impossibly low. And then enter The Beast today. I've taken my migraine meds and am feeing a bit better now but I'm wondering has anyone else struggled with the mental health knock-ons with Pred? And how do you deal with it? All tips gratefully received! It's been kind of brutal.

@EmsIMO I've got my new Ovusense to try that this month. Thanks os much for the tip and I'll let you know how I get on.

@Wishing5tar I'm glad you have a plan of action. Every time you have to wait it feels like an eternity, I know. Hang in there.

XX

@Wishing5tar the headaches are definitely the pred. I was getting them every month when I stopped, sometimes so badly that I couldn't go to work. I called them The Beast. That's why I decided to give myself a rest from them in the end (also because I wasn't getting pregnant) although don't go against Mr S

Good luck to you. I completely know what you mean about the waiting. So frustrating.

Hope everyone else is doing well.

@ginandtonicformeplease thinking of you! When will you get the results of your NK test?

@DaniMERL @Naticle My appointment with Mr S on Thursday went okay, he’s added hydroxy to my treatment plan as expected (thank you both for giving me the heads up it was nice to already know what was coming and have read up on it ☺️) He explained that it is an anti-malaria drug and it just adds another layer of immune support. I asked what happens if this isn’t the answer and I miscarried again (the pessimist in me wanted to know if this was our last option 😣) and whilst Mr S wanted us to think positively he did say there are other drugs which is good to know I guess. Given this miscarriage was slightly earlier than my others he suggested it may have been abnormal chromosomes but we will never know for sure without testing the ‘product of conception’ 😏 So I’ve started taking the hydroxy (bitter little buggers they are 🥴) and we have to wait at least 6 weeks before we can try again. If my dates are correct we will just miss an ovulation at week 5 so it’ll likely end up being 9 weeks... typical! I can see why you said it drove you insane @DaniMERL it feels like forever away already 😢 although I am kinda looking forward to a break from the Pred. I’m currently still weaning off the Pred & have been having quite bad headaches. I don’t know if it’s dehydration and not drinking enough in this heat, just stress of everything going on or a side effect of coming off it 🤷🏻‍♀️ Oh and I’m also still getting positive pregnancy tests which is frustrating even though I’ve stopped bleeding from the miscarriage. I have to test again in the morning and if it’s still positive go back to the EPAC for more bloods to test my HCG levels. They were only 44 last Monday so hopefully they’ve dropped 🤞🏽 the only silver lining may be that if my levels aren’t at 0 yet, once they are I should hopefully have my normal period and that may change my dates and bring things forward slightly following 6 weeks of hydroxy! Oh how we now wish for the simplest and strangest of things 😂

How’s everyone else getting on? Xxxx

P.s I feel like I write essays on here 🙈 sorry!!

Hi @Hopeful07, mine is slightly different as it's IVF. After my first MMC, my clinic tested for NK cells and found I had elevated levels. I then had two intralipids before transfer, and took pred. More intralipids after a positive test. I had another MMC, so before this transfer I've had two lots of intralipids, then another blood test to see if the intralipids worked or if I'm among the 10% of women they don't work for.

Hi @ginandtonicformeplease, the midwife in Dr.S clinic advised me to wean off the pred if u re taking it for more than 10 days. If not, u can just stop it.. And regarding the intralipids, did u have to take it during ur cycle or for investigations and then test the NK cells level?

@EmsIMO Did you gradually taper off the pred? I was told it's really important to do that or the side effects can be pretty bad.

Oh @ginandtonicformeplease sending you a big squeeze - I know how you feel, some days you just think 'shall we just stop' ... but you don't and you won't X

Ladies who were on Letrozle, can anyone report of pains the month they stopped taking this? I took Pred & Letrozole in June & July and am having a little break now as holiday dates have enforced us to do so, which is no bad thing, but oh my wow, I'm having intense pains (stomach and around the ovaries I guess) which I can only attribute to 'coming off the drugs'?! The pains started leading up to my ovulation. Did anyone experience similar?

Has anyone had to re-do the NK cells test after intralipids? I've had two lots of intralipids and now waiting for the results of the test - the dr wants to be sure that I'm not one of the 10% of women intralipids don't work for.

Sometimes I'm positive about all this, sometimes I've just had enough. I'm really not looking forward to going back on the pred - the non-stop hunger was appalling. At the moment I'm still on the weight loss plan - not far to go until I'm in the normal range of BMI rather than overweight! I think my FET might be in September, which seems ages away but isn't actually that far now.

@KittyKatSmile Ahhhh I see! It's just me who can see the stars ... I think I get it! Thanks x

@EmsIMO it seems it hasn't given you any * today, it has given you bold instead

Morning Ladies

Thanks so much for coming back to me on the Comet test @DaniMERL @Pop1234 @Chickjen @KittyKatSmile and @Belarita and it seems we are not alone in how we felt! X

@Pop1234 and @Chickjen We did have a chuckle reading your comments as my husband said the light kept going off too!! I mean honestly!! Talk about working under pressure!! We will be complaining, @Belarita** Thanks for the info - Annoying to know people have complained before and nothing has seemingly been done.

@Pop1234 His results were: Average 52%, Low 4% & High 58%.

After our initial panic we read the info on the Comet website (actually useful and why they don't send this out with the report??) and read all the comments on here which helped A LOT. He's going to take the Impryl and see the consultant Mr Gordon. He contacted his GP and we've worked out he's actually had some of the tests recommended (he had to when we did IVF) so that's a few things ticked off the list already.

@Belarita Thanks for sharing what you're husband did, that's really useful and yes good point re it taking 3 months i.e. the wedding wouldn't have effected his result that day. Also agreed with AF beer, we've just got into that - wouldn't even bother with the wines (would rather drink the real stuff!) X

(p.s. Does anyone know why it keeps adding ** after the usernames on here when I post?!)

@EmsIMO we got our results by e-mail too, and the disabled loo scenario! DH said the light kept turning off and he had to keep waving around to keep it on 😂 I think we were both just relieved he got it in the pot!

I need to book a medication review appt soon so we're planning to wait and ask about further investigations then, but in the meantime he is going to take the impryl and ditch his regular supplements, try and lose weight, and try tepid baths (we literally have no shower 😕) he doesn't really drink so we can't blame that.

I think the urine test sounds worthwhile but as we are both completely set against any type of surgery I'm not so sure the scan is worth it. Plus I am already fed up of all the appts and cost with no progress to show for it.

I quite like Eisberg Sauvignon Blanc alcohol free, but then I am a cider drinker 🍻

Just chipping in... I also think the delivery of the sperm comet report is poor. Our accompanying email said all was well in a breezy manner but the report summary said there was a increased risk of miscarriage. It left us really shocked as we really hadn’t considered this side of things. We also found the report difficult to read and my husband has a science PhD!
When we queried it we were still told not to worry and at an appointment with Mr S he also out our minds at ease but it’s all a bit of a mystery still.

My (sadly now ex) DP had his results over email I believe with little or no explanation. We were livid and both being professional analysts went back with a load of questions which I have to say weren't answered very well at all. Mr S was very reluctant to give any concrete advice or even answers. We felt pretty let down and in the end actually sort of focused on to me side of it but it does of course play on my mind now and then because I'm now pregnant with donor sperm and all seems well (touch wood). I try not to dwell on it.

Shame to hear that others are having negative experiences as well.

Agree wholeheartedly on alcohol free beer (freedam is my favourite if you haven't tried that one); the wine is the work of the devil.

Happy Sunday everyone x

Hey @EmsIMO,

Just getting the results through on email is such a rubbish way to find out. I'm really annoyed this happened to you as we made a complaint about this very thing several months ago. We got DH's results last thing on a Friday so we couldn't even call. We sweated and cried about what it could mean all weekend. Horrible. They said that it had been a mistake and his results had accidentally been sent out with a batch of people re-testing (so better versed in how to interpret them). Dr S and the nurses apologised profusely at the time but I wonder how seriously they are taking fixing this. It feels to me like an example of how men's fertility and emotional health in the whole TTC/Parenthood process are really sidelined. I can't believe they'd send a graph with similar wording to a female patient. Do DM me if you want any details or back up to make a complaint.

So, putting that bad bit of practice to one side. My DH started on the Impryl early March. He'd cut out booze around a month before that. He's basically been T total and just had a few drinks in that time on special occasions (the odd glass of fizz at a celebration and a few glasses of wine on a recent holiday.) Giving it up to the extent he has is something that he wanted to do anyway as he felt it was time to readdress his relationship with alcohol and our fertility situation gave him that extra impetus. The advice he had from the consultants was that the odd drink here and there is fine, its binge drinking that's the most damaging. It hasn't been easy for him but there are some really amazing alcohol free beers available now (we should have shares in Nanny State) and that has made a huge difference.* They completely fulfil that psychological need for a cold beer at the end of the day.

From what I understand of Impryl, rather than delivering extra antioxidants for the formation of new sperm, it revs up the body's own antioxidant response. A direct antioxidant load causes another kind of damage so it has to be achieved through the body's own antioxidant system. Dr S explained it all rather well when we met to go over DH's results (we both got our results through at the same time, but of course I got mine revealed, and explained to me in detail, in person .) As your DH is already quite informed about supplements it might be good if you can get a meeting to go through the details of that in person with either Dr S or the male fertility consultant.

At least my DH was spared the disabled loo experience! He gave his samples at the clinic they use near Harley Street. Your DH can just get the form and do it there in the future. It may help to feel a little more control over the circumstances.

New sperm take 3-4 months to form (which makes me think your wedding weekend is unlikely to have had an impact). One of the consultants did ask DH how long he had been keeping it in, as it were, before his first sample and said that does have an impact. So I'd imagine that there is some variation between samples and keeping a good turnover going helps. As ever there are no guarantees but Dr S said that they do sometimes see remarkable improvement with Impryl.

This is a strange world we've found ourselves in eh? And the endless expense is hard to take. I do hope you get answers and quickly.

x

• Alas there is no such thing as good alcohol free wine. Don't let anyone try to persuade you otherwise.

@EmsIMO sorry to butt in but my DH was completely traumatised by the whole disabled toilet situation! He also said that the air freshener kept going off and it really did not help with the sample. I really thought they would have a specific 'private' room for it.

In terms of the tests, my DH did the urine sample, had the scan and saw the consultant. Although it was useful, we could have read on the internet how to improve it. But it was good to rule out any infection and possible varicose veins that he could have had (which he didn't).

If you don't mind me asking, how bad were your DH results? My DH got 11% high damage and he has basically been taking the vitamins, cut down on booze and caffeine and been trying not to get to hot down there. I'm not sure why they recommend impryl, but the consultant really spoke highly of it.

Also if you read further down that @Belarita's DH has had really good improved results, so try and take comfort in that. It is awful though I know. I found getting my DH's results worse than my own!

@Belarita I've just re-read your post where you mention it was 4 months - That's amazing. Was he completely off the booze, as in T-Total all that time?

My husband was at a wedding two days before doing his test where he drank a lot .. we just wonder if that buggered up his results a bit!

Afternoon Ladies

@Belarita Ha no worries re the question and no it doesn't at all re CM, hasn't changed a thing and I'm 40(ish!) too so obviously wouldn't want things messing with that area!! If you want anymore info on it just message me X

@Wishing5tar Sorry to hear your news :( So unfair XX

@Belarita and @Chickjen Your posts mentioning the Comet Test have also come at a good time for me as my husband had his (rather shocking) results in a few days ago and we're feeling rather confused with it all. We were a bit annoyed to pay £450 and just get an email with the results (plus he just had to use the disabled loo downstairs in Mr S's office, bit weird, no?!) - and we're confused by ALL the recommendations, which obviously cost around £200/250 = about £1k's worth of treatment. Did anyone proceed with everything recommended or just see the consultant first? (which I think is what we will do)

My husband looked in to Impryl and he's pretty much taking everything in it already (if not more) Does anyone know why they recommend it specifically?

Doing the test has left us upset actually. The report just said 'high risk of miscarriage', that's it, but aren't every 1-in-4 of us at risk from that anyway i.e. it's a little misleading and unhelpful? Also I've heard doing the test on certain days can give different information i.e. how reliable is it? Any thoughts Ladies?

@Belarita How long did your husband do his lifestyle changes for before doing the test again? Also ... Every 24-28 hours!!!!! Bloody hell!