Immune/NK Issues - aka Pred Thread no 25!

[Eeviee]

An introduction to this thread. It has been running for many years and has proved a saviour for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover immune issues, NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in 

Tagging people from the previous thread but please tag anyone else I've missed.

@KittyKatSmile @FrannyAnny82 @HoldingOn2Hope @Crystal2020 @Countrygirl220 @HarrietM87 @williteverhappen @Wishing5tar @hrtbrk2 @KtAgs @Gooe @peperethecat @zoe16 @williteverhappen @mezgaski @VenusStarr
@Ultra26 @ceebee21*@Luckyducky2 @weddinghelp1* @Hippo20

Morning ladies - I have my first SO follicle scan with dr S today and of course to trigger shot if looking good - however I have today got a peak smiley on an ovulation test! On day 12 - that's a minimum of 2 days earlier than normal so god knows what the letrozole has done to me! I'm worried now that it's going to be too late by the time I get down there for my appointment this afternoon - oooor it could be good timing for him to check before they pop. Either way doesn't look like I'm going to get the chance to trigger shot - anyone else come across this?

I'm keeping up to date with this feed all the time and love reading all your notes. Sorry I'm not as active - I sometimes feel like I'd just be repeating all the points you lovely, and clearly knowledgeable ladies make as I'm a bit later to the party.

@hrtbrk2 good luck for your scan! I’m unsure on the peak on the ovulation test as I didn’t use them last month when I did SO. Doesn’t it just track your surge to let you know your body is ready to ovulate but the trigger shot is forcing your body ovulate anyway? Hopefully your follicles are ready and they can do the trigger for you today 🤞🏽

A few of the ladies on here told me last month that it’s a bit of trial and error with SO at the beginning to get the right dates & dose. So fingers crossed everything works out perfectly this afternoon but if not, try not to worry (easier said than done I know!) as I’ve you’ve already ovulated on your own, all is not lost and you can still try 🌈

Let us know how you get on! Xx

Thank you w@Wishing5tar - I noticed in one of the previous comments that you'd mentioned starting with dr s last April - has he given you any indication of next steps after a certain amount of time or does he just say carry on? How many SO cycles have you done? I'm sorry it's taking some time - it always takes me ages to conceive usually too - up to 14 months once but usually between 8-12 months each time! Doesn't help with our sense of urgency does it!

@hrtbrk2 so I started last April, first cycle on the steroids was beginning of May. I fell pregnant in July but lost the baby around 6 weeks. He added in hydroxy so I had to give that chance to get into my system so started TTC again in September. Did 6 months of hydroxy without falling pregnant again so was going to ask Dr S about starting SO when Covid hit 🤦🏻‍♀️ decided I wasn’t going to wait any longer so started SO for the first time last month ☺️ Given he says he sees the most success between cycles 4-6 we’ve said we will do the 6 cycles before deciding what might be our next steps. I’m assuming it would be trying IVF but that seems a bit daunting given I know I can fall pregnant (or could previously anyway!) 🤷🏻‍♀️

I’m sorry to hear it usually takes you so a little while to fall pregnant too. Here’s hoping SO gives your body the little boost it needs 😘🤞🏽 X

Oh wow - ok well that actually doesn't sound so bad then (not that i mean that it doesn't feel like it for you of course) I just mean if you've had breaks in between it's not just been months of the same thing which is good, and I'm sure it will happens for you. We are the same - going to give it up to 6 then make a decision as to whether to do something else - although god knows what waiting lists for ivf will be like by then - let's just assume we won't have to get that far!

@hrtbrk2 the peak on the ovulation test means you’ll ovulate within 24-36hrs, so getting the peak the timing is the same as if you’ve had the trigger shot. So if it is peak this morning and you would have triggered this evening you’re only 12 hours or so ahead, so shouldn’t affect your sex plans!

I guess all will become clear when you have your scan but hopefully there will be some follicles ready to go. I think the trigger forces you to release all possible follicles whereas you might only release the dominant one by yourself, so Mr S may still give you the trigger anyway. I never monitored my ovulation with ovulation tests when doing SO so no idea if this would have happened with me!

In my experience (and the many friends I’ve met on this thread over the years!) it does take a cycle or 2 to get SO right, which I think is partly why success is more normal cycles 4-6. As far as I know Mr S suggests a break after cycle 6 but I actually don’t know anyone who hasn’t conceived by then so not sure what the next steps are. Hopefully you won’t need to know!

Hope everyone else is well. @Countrygirl220 how are you doing?

Hi everyone, I wondered if I could butt in and ask a quick question? I’ve been taking hydroxychloroquine for 4 months now and over the past couple of days I’ve broken out in a bright red slightly itchy rash over my whole body. I can’t think what else could have caused it, no other meds or exposure to allergens etc. I’m freaking out! Talking to Mr S tomorrow but wondered if this has happened to anyone else? Thanks.

@MolotovMocktail hello! It hasn’t happened to me but when I had my 2 month review with Dr S after starting hydroxy he asked if I’d had any side effects. I said the only thing I’d experienced was I’d had shingles twice in the space of 3 weeks (he wasn’t concerned by this BTW and just said it didn’t surprise him given I was taking immune suppressants 🤦🏻‍♀️) but he specifically asked ‘no skin rashes or anything’ so it’s possible it could be a side effect.

I’ve just had a quick google of the side effects of hydroxy (wish I hadn’t done this now! 😨) and it doesn’t mention skin rashes specifically but definitely think it’s worth getting it checked out x

Thanks Wishing I looked too and now shitting myself it’s Stevens-Johnson syndrome and I’m going to die! Expect I’d feel a lot more poorly though. I’ll update once I’ve spoken to him tomorrow.

Thanks @harrietM87 and @Wishing5tar so helpful, love this feed. He's given me the trigger today but said he's not hopeful this month as my dominant follicle was too big at 25 already although he said I had a nice healthy lining at 11.5, so looks like it could be back next month to do the same again, but we'll see. We'll try anyway. He also said my other ovary was slightly polycystic. How I've got 6 yrs into this game with no one telling me I'm PCOS I'll never know!

@MolotovMocktail I'm sorry to hear that and you must be worried - but, I'm wondering - hopefully to ease your worry, my first thought is that if it was an allergic reaction to the hydroxy you would have had it long before 4 months? So hopefully it's just something mild. Let us know what Dr S says tomorrow, and try not to panic, as hard as that is.

Has anyone had any kind of side effects on the hydroxy either on short term or long term use? I have to admit I am VERY dubious about this drug due to its level of potency and the length of time we will all be on it if we include the build up to get pregnant and then the time we would stay on it at pregnancy (I've been told the full 40weeks for me!!!)

X

Ps @MolotovMocktail I've just read that skin rash is listed as one of the common side effects, but not one of those listed as serious xx

It’s definitely trial and error @hrtbrk2. I went on day 9 for my first SO scan and I had to trigger that night as I was ready! What day has he advised you to come next time? I am avoiding reading anything about the Hydroxy as I know it will totally freak me out. On a plus note, I’m physically/mentally feeling much better than I was when I was on the steroids (apart from the below!) so I’m trying to focus on those benefits. I know exactly what you mean about the long term use though...

@MolotovMocktail appreciate this is nowhere near as bad as what you’re going through but a couple of weeks ago I came out in a strange rash running from my left hand all the way up almost to my shoulder. It was red and pretty hot and itchy and I felt very irritated by it. Almost looked a bit blistery. I didn’t know whether to attribute it to the Letrozole or the Hydroxy but think it was definitely one of them. I had taken Letrozole twice before and I’d been on Hydroxy for about a month when it happened. It lasted for about a week and calamine lotion helped. I didn’t end up mentioning it to Dr S as it was gone by the time of my appointment and my husband was worried he’d end up changing my programme because of it. Let us know what he says and good luck with your appointment. X

@hrtbrk2 did he offer you the inofolic by any chance??? 🤣

Having a poly cystic ovary doesn’t mean you have PCOS - it’s a normal variation of ovaries. I have them too due to my hypothyroidism but I categorically do not have PCOS (you need 2 out of 3 of hormone imbalance, symptoms like acne, excess hair etc, and the ovary appearance). I think he’s been hyping up the polycystic ovaries since he started pushing the inofolic so I’m very cynical about it!

Sounds like you’re still in with a chance this month! And great news on the lining!

On hydroxy, when I had my son I met a group of ladies on this thread and we’ve all stayed in touch. 2 had babies on hydroxy - 1 had mc’d on pred and the other wasn’t conceiving on it. I think one had some hair related side effects - her hair went grey or something?! But the other didn’t as far as I remember. And both had beautiful babies and all doing well over a year on.

On the back of my blood tests, I went to see a rheumatologist privately to investigate me for Lupus (as my anti nuclear antibodies were so high and had other signs) as wanted to make sure I didn't have a condition that needed treating. The treatment for it is often hydroxychloroquine and whilst i didn't have lupus (but may develop it when I'm older), the rheumatologist said it was a very safe drug, especially in pregnancy. As its in the news so much, its hard not to read a lot about it. I started on the hydroxy first, had some gastrointestinal disturbance but I've got much more side effects off the pred. Not a fan of the pred at all! And I'm only on 15mg. This stuff is grim.😷.

Xx

Oh wow @crystal2020 day 9 that is early - thanks that really helps! Weirdly he asked me to go the same time and same dose next time?! He said it might have been a one off so has to test it again before dropping me down a dose to 2.5mg. Great news that you feel better off the pred, it's so funny how that reacts with people - some ppl say they feel amazing on it and others horrible! How long did you take it for before coming off?

@HarrietM87 so funny - I'm not sure if it was you we were discussing inofolic with but I am TOTALLY with you on that front! He gave it to me from the beginning and basically admitted it was a bit of a nothing thing if I don't have PCOS but may help if I do! 😆 Perhaps he's on commission! Haha

After I commented this morning about the PCOS I also read what you said about the difference with just pco and not S - I have none of the symptoms so clearly don't have full blown PCOS and have always had a clockwork cycle too so am not going to worry about it!

Also lovely to hear about the group your knew who all went through it on hydroxy - gives us all a little hope and assurance re. side affects!

@KtAgs thanks so much - that's really reassuring, hopefully for poor @MolotovMocktail too!!

On an entirely different note ladies - when we went down yesterday the clinic were having a swanky new blue door fitted to the outside of the clinic with a massive gold door knocker and Dr S was outside with the fitter directing proceedings - my first thought - at least we know where our money is going 😂😆🙄 xx

Ha ha @hrtbrk2. When i knock on the door, I'll remember that 😂.

Here's also a link to a trial Lesley Regan is a part of at Guys that uses Hydroxy in women with APS.
pubmed.ncbi.nlm.nih.gov/28609801/

Katy x

@hrtbrk2 your post about the new door has me in fits! Will be chuckling to myself next time when I see the giant new knocker we've all paid for! I took the pred from February and he wanted to swop me to the Hydroxy because of coronavirus. Just felt generally wretched and never slept when I was on pred so it feels like a relief not to be taking it this time and the 10 days is somehow passing ok and doesn't feel as painful generally.

Loving your stories about Hydroxy @HarrietM87 and @KtAgs, great to hear something positive. X

Hello ladies, hope everyone is doing well.
I'm ok, taking each day as it comes until my next scan.
@hrtbrk2 glad your appt went well and sounds like you had a great follicle so fingers crossed for you this month! Great about the lining too :)
Hope everyone else is doing ok xx

@hrtbrk2 I seen the new door when I went to the clinic at the end of May 😂 I mentioned it to Geri when we were paying and she said it was supposed to be grey ‘so you can imagine how that went down with you know who’ 🙈😂 we had a right giggle! I’m not sure how they could get the colour so wrong 🤷🏻‍♀️ I actually like the powder blue colour though, the knocker will be a new addition that I’ll look our for on Monday 😜

Hey everyone, an update from me. It seems the rash is from a particular brand of HCQ called Quinoric. I had been taking a different one from CRP then my local pharmacy got me Quinoric instead. I had taken about 9 doses when the rash started. I wondered if it could have been this and Mr S confirmed that he’s seen quite a few other patients with a rash from this brand. Not sure why they haven’t been telling people not take it!

So at least I don’t have to stop taking it altogether as that would be the end of the road for me but this cycle is a bust and I’m starting to feel like I can’t take much more of this, it’s been years of trying for me. Feel like giving up.

Thanks for your support and sending my very best wishes to you all xx

@MolotovMocktail that's really handy to know as the most recent box I've been given by my doctor is also that brand so I might not try it and see if I can get another from dr S when it comes to it!

@Holdingon2hope thanks lovely - he was really cynical and said not to hold out any hope on this month as the follicle had got too big so we'll see - would be lovely if he was wrong!

@wishing5star the door knocker was hilarious - obviously dr S's finishing touch - you certainly can't miss them now if you've never been before 😆

Anyone know if the trigger shot messes with your temps? I had no temp drop this ovulation in fact it jumped up yesterday morning after trigger shot and still up today even though I shouldn't have ovulated until around now x

@hrtbrk2 I had a huge temp spike the day of trigger last month and then it dropped slightly before spiking again and staying high for a couple of days. I tested out the trigger shot and got a negative on 7 days post trigger so thought it was maybe the HcG keeping it high?

Insomnia is such a struggle at the minute (I don’t think the light nights are helping) but I’ve been having some noticeable twinges these last couple of days and it was keeping me awake last night so I’m hoping the letrozole is doing it’s job 🤞🏽 I know it’s been asked recently but what do people recommend to improve to their lining? 💛

I've really struggled with sleeping too. First cycle of starting the pred. I'm struggling generally with the steroids. They're awful. I'm all over the shop. Mood swings, jumpy, grumpy. I knew it might be bad but my god. My nipples are really achey too but reckon thats the progestetone. Due to test on Sunday and I'm dreading it. I cannot get a handle on my mental wellbeing with all these drugs. Not nice. Xx