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

[HappyApple05]

Helllooooo dearies

Opening this new thread looking for a light in the tunnel during my journey towards conception. Would be nice to walk along with people in the same journey. To cut my story short, 3 miscarriages and referred to Mr.S, diagnosed with high NK cells and lupus positive, already on levothyroxine. After 2 weeks of staring at the med pack, I have now finally started on Aspirin, Vit D and Pregnacare plus. Awaiting Ovulation to start on Pred protocol.

Miscarriage history:

1. July 2017 - In my 12 week scan, found foetus with no hb (6 weeks foetus size), devastated! Had severe morning sickness, didn't predict anything negative. Took my son (6 years then) to the scan planning to break the surprise where he could see his sibling in scan.. We all broke down, opted d&c

1. March 2018 - started bleeding in 6 weeks and miscarried naturally.

1. July 2018 - spotted in 6 weeks, scan at EPU no pole, returned when 9 weeks along, still nothing, opted d&c

Bought the ovu predictor kit for the first time, counting days to use it. Any of you in the same position? Would be great to hear your stories and cheer each other up towards the destination. Previous threads were beautiful, so supportive but sadly the latest post was in Sep 2017. So most of them would have crossed the bridge. Decided to start on a fresh thread.. So here we are....

Looking forward to catching up... Take care you guys.... Plenty of baby dust to everyone

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

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

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

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! 😱

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

@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!

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.

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

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

@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

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.

@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'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.

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

@kdd1980 good work! A slim chance is better than no chance 🍀

@ginandtonicformeplease how bl00dy annoying! Humira is a brand and there are some generic alternatives, does the clinic know if they might work instead? Assuming they are available of course 😥

I've started bleeding today so I'm sure that's it for me. I asked the clinic how to wean off but they are saying double the cyclogest/go to the EPU etc. Does anyone know the procedure for getting off pred after 4 weeks?

@Chickjen I'm so sorry to hear that - I really hope that's not it for you.

I weaned off pred after being on it for about eight weeks - I had to do it very slowly, reducing by 5mg every three days. I think I was on 20mg so it took a fair while.

@Chickjen fingers crossed tightly that it isn't but attached is the weaning protocol. Again, this is for 20mg x

@ginandtonicformeplease @KittyKatSmile oh god that's going to take forever 😱 as its only 4 weeks I was thinking along the lines of reducing daily or half for a couple of days. 😕

@Chickjen really sorry to hear you’ve started bleeding 😞 crossing everything for you! If you did need to wean off the Pred I would definitely follow the advice. I was only on it for around 5 weeks and weaned off 5mg every 4 days (as per Dr S’s advice). It took a while to reduce down from 25mg but I couldn’t have done it any quicker as the withdrawal symptoms were awful 😣 it may have just been a combination of the bleeding, hormones etc but the headaches were intense. Xxx

Thanks @Wishing5tar 😀 how are you getting on now? Have you started the hydroxy? I'm guessing that is the next step for me. How is the puppy?! 🐕
No bleeding today but I don't think that means there's hope, just that this is going to be long and drawn out 😩

For those of you with NK cells issue can you please let me know if you’re on Dr. S’s protocol? Did you have a consultation with him and were you required to do further testing prior to treatment?

I’ve just done loads of testing and learnt that I have high NK cells. My doctor isn’t too knowledgeable in this area and I don’t think his dosage is working so I would like a second opinion. Do you think Dr. S would be willing to review my test results and provide me with treatment or he’d definitely need to do office consultation/further testing. So far most of these doctors want to repeat or do further even though my tests are only a month old. Seems like a money-making thing to me.

Hi @zoe16 I was on Dr s. Protocol. It worked for me. I had previously had many tests funded by axa ppp but they were not acceptable to him due to my age (then 42) and time from when they were completed (9months)
I think it will depend on these factors. Like you I felt a lot was money making but ultimately, he was right and it worked for me. Good luck x

Thanks @naticle I’ve emailed his office to enquire whether he would accept my test results being they are only a few weeks old. Hopefully he says yes and treat my current pregnancy. If no success, I would do further testing as recommended by him. Fingers crossed I’ll be as lucky as you and finally take home a baby!

@zoe16
His usual protocol is to start prednisone at ovulation but it's worth discussing with his office.
Keeping everything crossed for you x