Immune/NK issues - aka Pred Thread no. 23!

[Chickjen]

A quick introduction to this thread.. it has been running for many years and is a group of women who have experienced recurrent miscarriage and are now exploring immune issues as a cause. We have members at all stages, from waiting for first appointments, mid treatment, to take home babies. Please join us if you are experiencing this too, loads of friendly advice here and somewhere to share your hopes and fears.
@KittyKatSmile @DaniMERL @Megan234 @Wishing5tar @ginandtonicformeplease @Pop1234 @Belarita @Naticle @EmsIMO @MrsMargot @kdd1980 @MairMum18 @Wewin @zoe16 @fnej01 @Hopeful07 @Cream123 @Anatrina @summertimehere @Lau2019 @PoppyJ1 @WeeGi @RedPandaFluff @Chilliandlime @Thumbellini @AcornHill @Maranello4 @Sunshineblonde1 @Nixwix @HappyApple05 @Widdendream77 @Zest11 @mezgaski

Thank you @DaniMERL Yes, I’m on progesterone, prednisone, baby aspirin. Plus all the typical supplements for egg quality, cm, hormones etc

It’s really a matter of catching the golden egg and protecting it from the killer cells once it arrives. My CD57 cells are very high.

Well today or tomorrow I expect my period. The line today was super faint on a FRER. So this cycle’s been a bust.

@Wewin I am so sorry for this. It sucks.. try to keep positive. Are you taking Ubiquinol? According to my nutritionist this is THE supplement to get you the golden egg.

Also, do you know where I could find a list of the NKC and their normal ranges? I did the blood tests last year and they are within range in theory but I bet I am missing something. For instance they checked for NK CD56+ and NK CD56+Bright but I have nothing on CD57 you are mentioning above. I am guessing Dr S will check but I am curious (and desperate to find a reason for loosing my pregnancies...)

@MrsMargot yes thanks taking ubiquinol 600mg daily. £50 a month. Expensive but a game changer for sure. I started out just taking CoQ10 but then soon upgraded to ubiquinol. I have my friend on it too as she’s doing her ivf round soon.

I’m sorry I don’t have the reference ranges. I never received any reference ranges, they just told me that I had abnormally high NK CD57 cells in my uterus.

I’m sure Mr S will do his job and be thorough going through all your results. Yet, he might have reference ranges but sometimes these professionals don’t like us analysing everything and they keep them from us. I find that a bit frustrating and like to know the data myself.

I am feeling so nauseas today again, really didn’t sleep very well last night either and have been peeing all day. I wonder is it possible to get a late BFP? I hear of these things but never thought it could apply to me. But with these symptoms I’m starting to wonder. I did a blue dye test and it’s super faint (just like the FRER). Or maybe it’s the progesterone making me ill this cycle... I just don’t know

@mezgaski in support of Dr S I would say that my experience is virtually identical to @DaniMERL. I had 4 miscarriages and 3 chemicals prior to his treatment. 1 further miscarriage whilst on his plan of pred and progesterone. Hydroxy was added and I was successful. I've wondered myself why Hydroxy wasn't part of the initial plan! It seemed (at the time) all part of the money making scheme.
Whatever my doubts regarding the costs and his manner I would say he is wonderful. My daughter is 1 next week.

@DaniMERL thank you so much for your responses and I absolutely agree that you need to go with his plan 100% and that's why we went to see him because I think he has such a great track record. Thanks for your input. I think I'm just scared of being on the pred for so many cycles given how long it can take me to conceive plus I want to feel like I'm throwing everything at the next one and want to take the hydroxy too but he's not prescribing it!

@Naticle thanks also. I do feel the same. Happy birthday in advance to your daughter! xx

Hi to everyone else and hope everyone has managed to enjoy some of the sun today x

@mezgaski no problem.
It took me 5 cycles to conceive so I was taking it that long plus I only knew it had failed at the 6 wk scan so on it permanently for that long too, then weaned off.
Had a month off in Feb and then back on it in March for the chemical and then the success immediately until I weaned off from 12 weeks - so was on it a fairly long time! Seem okay :)

@DaniMERL thank you xx

Hi all, I got a positive OPK at around 10pm this evening. (I'm glad I tested 3 times today). When's best for me to take the prednisolone, tomorrow or the following day? I'm a little anxious about it. Are there any side effects that I should be aware of?

@MairMum18 take it tomorrow I'd say. Some people I think have some sleeplessness or night sweats and some people have headaches when coming off them every month. Good luck.

@Wewin thank you! I have never tested NK in the uterus 🤔 Another thing Mr S May investigate. Yes the ubiquinol is supposed to be a game changer. I am on 200 mg a day (for now!).

@Naticle I have a semi stupid question, what is hydroxy used for? I did a quick google search and it seems that there are several drugs that have hydroxy in the name. If you could let me know so I can research it it would be greatly appreciated. I have heard quite a few ladies mentioning that this was added to their protocol. Thank you!

@Naticle it’s hydroxycloriquine and it’s an antibiotic. Basically another immune suppressant.
If you want more info there’s a patient info leaflet from the clinic that I could dig out.

Having seen the news today about them trialling the use of doxycycline in the Coventry clinic (Dr Quenby) linked to endometritis (not endometriosis), I’m wondering if does a similar thing. I have no idea though. It’s just that they are both also anti-malaria drugs so wondering if they work in a similar way.

Hi all, just checking in with the new thread although I wasn't very active in the old one.

I'm currently 8+6 with a successful scan at 8+1 following a FET supported by prednisolone, inhixa (enoxaparin), and doxycycline as well as the usual progesterone and oestrogen. I've finished the course of doxy and stopped the inhixa early due to bleeding but am still on everything else.

What was everyone's weaning protocol for pred? Clinic have been quite vague about how to wean it down but say I need to be off it by 12 weeks. I'm on 20mg.

@DaniMERL The theory with the doxy is that it treats any chronic low level infection in the endometrium therefore surpressing inflammation and improving the conditions for implantation. I thought it was worth a shot as it's so cheap and I know I can handle the side effects as I've taken or before for anti malarial purposes.

@tinypaws great news!
Yes I’ve been on it in past whilst travelling too.
Mr a clinic they say reduce by 5mg every 5 (or was 4?) day. Funny how fast you forget.
So dose was 25, then 20 for 5 days, 15 for 5 days etc.

Every 4 days, just checked x

Hi @MrsMargot danimerl has explained above the full name of the drug. (she tagged me rather than you in case you missed it) I googled it and it said it was an anti malerial.
It's not part of the initial protocol (or wasn't for me).
Your appointment is the end of next month? Good luck x

Thanks @DaniMERL

Sorry @Naticle :)

Ah @Naticle and @DaniMERL Thank you very much! No need to look for the info. I shall devour doc google 🤗. Curious about this antimalerian drug. It does seem to make a difference. Yes my appointment is at the end of October. I am wondering whether he will add it to my protocol or whether I can ask for it to be added. 🤔 He seems like not the ‘chatty/hear the patients’ doctor type. We shall see!

@MrsMargot
Hydroxychloroquine was part of my initial treatment, not steroids, but it didn’t work out for me and I still had a miscarriage (the pregnancy was tested for chromosomal abnormalities and everything came back normal). Then Mr S added steroids and I’m 24 weeks pregnant. Hydroxychloroquine might not work for everyone, but I remember him saying that both of the drugs work very well together. You need to trust him and follow his plan exactly. It will all depends on your test results which treatment plan you will be offered. I hope this helps xx

@Megan234 Thank you very much! Congratulations! I am very happy for you! Hopefully I will follow suit soon 😉. Yes I am definitely talking about having both together. Obviously I will talk to him but I was on pred plus progesterone plus aspirin and it did not work. At least not the dosage I was on! I have decided to trust him of course!

Hi all, sorry me again. I'm very confused and need a little guidance. I did another OPK this morning - around 10am (so 12 hours after positive OPK from last night) and it came back very positive - the test line came up before the control line, it was that positive. Anyway I was going to start taking the prednisolone today, but now I'm not sure what to do? Would anyone be able to clarify what day would be best to start the pred? Thanks

@MairMum18 yes, still take them today. Although it's meant to be in the morning really. Which tests are you taking? As 'positive' isn't really clear because it may give you a few days, when ovulation is on the last day. It is meant to be taken on the day of ovulation but as I say, some tests will give you the days you should be trying.

@TinyPaws interesting, can you please tell me how the doxy work? Do you take it from ovulation throughout first trimester too and what is the dosage? I recall my doc giving me this and I conceived shortly after but still mc, I’m wondering if the dosage wasn’t enough as his prescription called for a few days.

@KittyKatSmile I'm just using the cheap OPK's I've spent so much money on the clear blue advanced one I can't face doing it anymore. I'll take today, is it ok for me to take now and then start tomorrow's dose in the morning?