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

@Wishing5tar I don't really know what he might suggest. To me it sounds like the time is right for super O but of course what do I know. Are you on pred as well? He may suggest a break from that as I think that can sometimes help.

What are your thoughts on IVF? Would you consider it? It's incredibly stressful but I think after the stress of trying naturally it is a relief to have things to do and protocol to follow. Stick with it x

Thanks @Wishing5tar that's a great idea. Sorry about the BFN, I know how disappointing it is. I just had a month off and am dreading getting back into it all. It's just heartbreaking. I'd definitely look into the super O, it seems to work for a lot of people.

Thanks @MrsMargot and congratulations. Hopefully I can get a dr here to try that protocol for a few months. I'll just have to wait until after I get testing as until then he will only prescribe 5mg.

Am I right in thinking Dr S protocol for most people is:
25mg after ovulation for 10 days?
Aispirin all cycle long and progesterone after ovulation too.
I see a lot of people have also been prescribed an antibiotic called hydroxy too. Do you mind me asking if you took a course of this too? Thanks

@KittyKatSmile Yes I’m on the Pred too but after another miscarriage he added in hydroxy too. I had a two month break from the Pred whilst I was taking hydroxy for 6 weeks to get it into my system but I wasn’t allowed to TTC at the same time so don’t know if the break would’ve helped or not 🙈

We’ve said we’d seriously consider IVF after my March follow up if nothings happened before then. My reason being that with my latest miscarriage Dr S suggested it was probably a chromosomal issue (he’d said something similar about my previous 3 miscarriages too at my initial appointment) so I figure that with IVF if they select the best embryo and I’m on the steroid programme that if I still miscarry then maybe it’s something other than NK cells that’s causing it. And surely 4 consecutive chromosomally abnormal pregnancies isn’t just bad luck? Does that make me sound crazy? 😂 xx

@Wishing5tar no, not crazy at all. With IVF you can also screen the embryos for genetic issues before they are put back so you know you've got the best one possible. You can also look for a clinic that will do the immune treatment as well so they can cover everything. Keep going.

@Laineym thank you! I am not sure whether all programmes are 25mg on pred. Mine is. He did tell me to take the pred the progesterone and the aspirin from ovulation onwards. I took it for 10 days then I tested and in my case, I continued. If it is not a BFP month I was supposed to stop and start again.

I am not on hydroxy. I am not sure when exactly this is given. I have a feeling that some ladies take it to lower the NKC (I may be wildly wrong here) but he did not give it to me. I am also on intralipids every 4 weeks.

Good luck ❤️❤️❤️😘

@Wishing5tar we were also considering IVF after my second ms. then at the 3rd we did genetic testing and the baby was healthy so we decided to give it another go. Having said that, I had done extended research on the clinics that ‘believe’ in immunology issues( I was sure I have some sort of issue on that front). Some of them are more expensive than others but if you ever need let me know and I will dig out the names.

Above all, I am hoping you have the best news next month so none of this will be needed 🙏🏻❤️😘❤️❤️😘💪🙏🏻🥰

@Wishing5tar my baby is IVF and I did all of the immunology stuff through them: Zita West. They have been wonderful throughout.

Hi Ladies,

I'm on day 11 and due to have the trigger shot tomorrow and start pred on Tuesday but I've got the flu. So unwell with it. It's been 10 days so considering seeing the dr tomorrow as feel I may need antibiotics but worried I can't take the pred. Just feel jinxed!

Hi @Laineym, Hydroxy is short for Hydroxychloroquine. Its not an antibiotic but a drug originally developed to treat Malaria in the 1940s. These days it's regularly used to treat immune issues such as Lupus and Rheumatoid Arthritis and in reproductive immunology for high NK cells. I'm currently on it because I had particularly bad side effects from coming on and off Prednisolone, but I think (although not sure maybe other ladies can advise) that in some cases it's prescribed in addition to prednisolone. Hope that helps!

Just a quick note to all you lovelies to say Happy New Year. I've been away from the thread for a bit. I completed my miscarriage over Christmas but still managed to have a nice break. I sent a message in December which for some reason didn't post. @MairMum18 I just wanted to send you huge congratulations and say thank you so much for your lovely message and being so kind. I was so happy to see your good news. x

@HoldingOn2Hope you can't take antibiotics for the flu so if you're sure that's what you've got then maybe just press on and see? Good luck x

@KittyKatSmile I think it's sinus infection 🙄 I've read though that even if I need antibiotics I should be fine taking pred too. I'm going to call gp tomorrow and Dr S nurses.
I spoke to my go friend today and she said with some of my symptoms she thinks it's infection rather than viral.
I'm trying natural antibiotic remedies like tumeric etc.
Xx

So it seems like it's sinus infection and have been prescribed Doxycycline as my gp said it won't interact with the pred. I've read that Dr S sometimes prescribes it too? Just spoken to Geri the nurse at his clinic and she thinks it's okay to take but is going to check with Dr S.
What a fab start to the year!

Hello All. For those of you who are doing or have doing Super Ovulation with Dr S, could you tell me a little bit about how it works and what days he recommends BD after I guess he has triggered ovulation? Feeling deflated after 3 months of negatives so looking at other options.

Hope you are all keeping well.

Hi ladies,
I was wondering, those of you who were put on prednisolone and progesterone plan by Dr S, did you go back to see him again after being on the medication for 2 months?
Thanks x

@Ultra26 I’m in the same boat as you, I haven’t tried super ovulation but I spoke to the nurse the other day and asked how is worked.
I think she said you’d take pills for a few days early cycle, then you go back for a scan then they give you the trigger shot to take away, you have to BD day of trigger and day after, and start Someone who has done may be able to give a better explanation. Hoping 2020 will be our year xx

Hi @Eeviee, yes, I had to go back in December. He just asked me some questions about side effects then told me to try again for another four months with the same protocol. I've still not had my AMH done though. Think I'll get that done ASAP because if it's bad, I don't want to waste another four months. x

@Eeviee thanks so much for you reply. I guess it's a nice option to have but so inconvenient! Let's hope neither of us need it. I went back to Dr S in dec for the 2month check up but felt like a waste of time - all that travellling for a 10min chat and a £400 bill.

Thanks @FrannyAnny82, that’s what I wondered... but I suppose they have to check possible side effect of drugs?
@Ultra26 thanks, I’m just wondering if I really need to fly down to London for 10 minute chat in order to stay on the same protocol...
Yes it’s good to have the option of the SO but massively inconvenient especially if you live in Scotland 🙈 for SO she said you have to commit to the scan too, think it’s around £450 for consult & scan then you pay meds on top. x

@Eeviee @Ultra26 I don't think you need to after 2 months really, given the cost etc. I don't think I went. If memory serves, I just used one of those online doctor apps to give me a new prescription for prednisolone. Obviously if you're really struggling with side effects then go, but otherwise see if you can manage without. He wouldn't change it then just because you hadn't got pregnant because it's too early. See him after 4 or 6 months I'd say... and worth trying one of those online doctors. Costs about £30 which is definitely worth it compared to the alternative. I've used them loads on this journey as they are cheaper and certainly easier than the alternatives xx

Completely agree @KittyKatSmile, in hindsight I wouldn't have gone, I did however refused the prescription from him and he wasn't pleased but I can get all my meds in Cyprus (Greek side) and it cost me 60 euros for 6 months supply and plan to stick to this plan especially since I'm back and forth a lot.

Hi ladies,

I have a question for those that are on Dr S plan and had to reduce the pills after the 12th week. Did you start reducing at the end of your week 12 or the beginning? Also, what about progesterone? He said I should be on it until week 16 but is this end of week 16? I hope it makes sense!

@Ultra496 I refused the pressaries and I told him I want to be taking utrogestan (which I can find much much cheaper from Greece but I had a lot of leftover from previous pregnancies. I am still on leftover! ) and he was absolutely fine. I do not think the drugs give him any earnings.

@MrsMargot I reduced from 12w+0 if that makes sense? So from the start. Pessaries the same logic. When do you start weaning?

@KittyKatSmile Thank you! Yes this makes sense! This Sunday. 😬 I am weirdly worried. I kind of feel ‘safe’ on the drugs. However I am so happy I am nearing the end of the first trimester and everything is ok 🙏🏻