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

And AIBU seems to attract the worst people in the world! I sometimes go on there for a little giggle.

I've noticed that occasionally infertility threads are invaded by posters who seem to think it's AIBU and start stating that the NHS shouldn't pay for IVF (ignoring the fact that they rarely do nowadays!). I do wonder why MN don't stop infertility threads coming up in Active, the way that Adoption threads don't.

@ginandtonicformeplease wtf are people like? I put something on there asking if people were exercising in the first 12 weeks (for the record I did. A lot. And I remain pregnant) and people told me I was selfish and risking my child's life. At least you have a safe place here. Ignore those horrid people. (This is why people say mumsnet is a terrible place!)

I put a post of the infertility board asking if anyone had found humira in my area: I've had a response basically telling me that my lifestyle choices are stopping her getting life saving meds. As though I needed to be made to feel anymore crap about anything.

@KittyKatSmile Funny you should say that, but we've got a week booked in October - just in time to know whether we'll need to pick up a load of HRT

@ginandtonicformeplease it sounds to me like you should probably both head to Spain for a month or so?!

@KittyKatSmile I hadn't heard about clexane as well - I'd heard progynova is in short supply, so when it comes to the actual FET DH May have to make a trip to Spain or similar to pick up medication!

@ginandtonicformeplease that is terrifying isn't it? I'd heard about that and similar about clexane I think. Good luck to you.

I finally have the prescription for humira from the clinic, but there's a nationwide shortage - can't find it anywhere. It seems most pharmacies don't stock it, and the few that do can't get hold of it. As annoying as this is for me - and I'm ready to scream - it must be so much worse for people who depend on it for chronic conditions.

@KittyKatSmile & @Chickjen thanks for the advise while I was on hols. We managed a couple of sneaky "tries" during the week. Not sure if I was too late for Ovulation or not, had to just guess, but decided to go on the Pred and Progesterone any way just in case! I'd say there's less than a slim chance this month!

Hey @Chickjen Thanks Lovely - Yes once this current round is done I think we'll bite the bullet and do a few Letrozole rounds back to back (urgh side-effects)

For me as soon as I start using the Progesterone my boobs get a bit bigger and are very sore. And with this round, god knows what has gone one but I assume it's a delayed effect of Pred but they are enormous (for me!) and incredibly painful, and this kicked in a few days ago, so before I've started taking the Prog.

Hope everything is OK for you XX

Hi @EmsIMO hope you had a good holiday! Sorry to hear there was no luck this month 😥 Does that mean you will try super O again? I would have loved bigger boobs as a side effect but sadly not for me, weird question, are they just bigger generally or only certain times of the month? The reason I ask is I did have a few months of getting breast pain from O and bigger boobs up until AF and that was when my thyroid was out of range, since taking thyroxine it's all settled.
It is 5 weeks for me today so this officially stops being a chemical! I still don't really feel anything though, the odd symptoms pop up and then disappear, which at first was really unnerving but I think I've come to accept. Will still be amazed if there is actually something there because overall I just feel too well! 😱

Hi Ladies! Hope you're all enjoying this lovely hot BH weekend :)

@KittyKatSmile Bit late but thanks for the DR APP advice. Turns out it wasn't needed but for future reference, if anyone needs a prescription urgently you can call 111 and get it that way (GP friend told me this) Also, fab news re your scan x

@mybestfriend123 @Wewin Good Luck x

@Chickjen Congrats! Hope all is OK? x

I was convinced this cycle just gone had worked after getting implantation bleeding bang on 10 days after ovulation, but then a negative test two, then four days later & my period came the day after medication stopped, ARGH!!!

A question for those on Pred. I know Progesterone messes with your boobs (I get very sore boobs as soon as I start taking it) but has anyone's boobs gone up a size (!!) from taking the steroids? I'm about six months down the line of taking Pred now and this month my boobs are definitely bigger. A quick Google tells me this is a potential side-effect but I wondered if it had happened to any of you?? XX

@DaniMERL ok well I'll take that as well. So much for carrying on the small side. I'm half whale already.

@KittyKatSmile oh that was in reference to my general appearance I think - the shape of my face and body rather than hair

@DaniMERL argh! I thought you said a few weeks ago that your friends had said you were looking better after coming off the drugs?? Please! I'm pinning all my hopes on this! (I'll actually just go and get rid of it cosmetically!!)

@KittyKatSmile hehe, I don’t know if I can. I’m told by some friends who have their rainbows that they lost their extra hair eventually but they aren’t sure when. My face is definitely still hairy but i think I got off okay with the rest of my body. Maybe my belly is a bit hairy but it’s still fair hair.
I’m 22 weeks now. I have a late 20 week scan with the Professor next Weds.

Thank you @KittyKatSmile. That's so great your intuition was right. You all are an inspiration for me to keep going. Sorry for hogging up the thread. Hope everyone else is doing ok?

@Wewin you're not a drag. We're all here for each other through ups and downs.

I didn't do PGS IVF as I felt fairly confident that my previous miscarriages were down to either my natural killer cells or my partner (miscarriages were with my partner; IVF is with a donor. Just to add to a difficult time!)

Keep going: and hope the cardiologist comes back to you soon x

Thank you @KittyKatSmile, truly remarkable what you've been through and all of you have been through. Did you get PGS ivf? I wish you a very healthy pregnancy and birth! Everyone seems to be on prednisone or prednisolone with additional things like hydroxy.

I should be ovulating this week and I so wish my cardiologist would call me back to start me on prednisone. I know it's probably not going to be the holy grail answer, but I'd like to at least try before another loss.

Sorry to be such a drag on proceedings here. I'm normally quite positive but after the last loss nearly 2 weeks ago, I went into a bit of a slump.

@Wewin happy to bore you with my drug stories I am on very few effective today but at the start was on 16 (I think) a day! This is an IVF pregnancy so I'm not entirely sure which ones are for my immune condition and which ones are just generally used in IVF but I was on oestrogen tablets and progesterone pessaries, as well as clexane (blood thinner) injections and then the prednisolone as well (20mg and am now tapering. I was on 25mg under Dr Shehata) and something for a slight thyroid condition which my clinic picked up on just before I started this cycle.

I know so very well the feelings of hopelessness and some of these ladies have seen me at very rock bottom (I am also a geriatric mother) but you need to keep on keeping on, at least while there are still options.

We're all here for you and someone usually knows the answer to any question you might have xx

@KittyKatSmile *4 miscarriages (so sorry)

@KittyKatSmile I just seen your post. I'm so pleased for you, that's really amazing you are at 12 weeks after having 3 mc's. There definitely is hope for those who can continue on their journey. I hope you are feeling well. Is it ok to ask what meds you are on please?

I'm so glad I found this board. Every other board I've been on, I've felt like I don't belong. People are well meaning but at this stage now I'm fed up listening to unwanted irrelevant advice. This experience has taught me a lot about how to communicate with people going through extremely difficult complex situations. Keep my mouth shut and just listen! lol

Yes @Belarita it's Coventry I'd need to go to approx. 7 days past ovulation (Dr Quenby's clinic). During two consecutive cycles I haven't to have unprotected sex. The investigations include a biopsy each month you see. So moving forward would mean putting our ttc plans on hold.

Locally, I'm waiting to be seen by the RMC but not sure how long I'll have to wait to see the consultant. They've taken my bloods and they have the pathology report from my D&C in July (mmc). I know the report said I have high killer CD57 cells. Maybe that'll be enough for the RMC to prescribe pred. I don't know.

I have some autoimmune indicators including a condition called POTS. My cardiologist said he'd be prescribing me prednisone for it. I'm trying to speak to him on phone to try and speed up this treatment.

What's the rush you may ask? I have recurrent depression and off my meds and cannot do that long term. Secondly I'm 43 so there's no time to waste.

That's everything in a nutshell. It's looking pretty hopeless really. Reality is setting in now that my family is complete and won't likely include a new addition.

oh @Wewin, its so painful. First and foremost do whatever you need to do to look after yourself today and the coming weeks and cry as much as you need to.

I'm a little unclear as to exactly what the path you've been referred for and what they recommend as all the clinics do things a little differently. Is it that you're supposed to book an initial consultation at ovulation and then get over to Coventry soon after?

If so would it be possible to both try this month and move forward with that plan? I imagine that initially they would want to do further tests rather than put you straight on a treatment plan this cycle, or am I wrong?

I also completely understand the urge to let it go and rethink and rebuild in a different way. That may be the right path for some of us ultimately, but I do think you have the possibility of, at the very least, getting a clearer picture of what is happening in order to inform your next move. Whatever you do, take care of yourself.