Immune/NK Issues - aka Pred Thread no 26

[KtAgs]

This thread has been running for many years and has proved invaluable 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

@HoldingOn2Hope*@Crystal2020 @Wishing5tar*@hrtbrk2 @VenusStarr @jellystar23 @3verhopeful35 @hazlet2 @whyisthistakingsolong @NICK7nick7 @LR12 @Lalaifa @lookingforanswers86

Please tag anyone else I've missed.

@LaurenAB94 thank you for your message. I hope you have a lovely Christmas and fingers crossed we both get good news when TTC resumes in the new year!

@KtAgs oh wow, that was quite a long wait between your first appointment and starting treatment! Haha, gardening in January sounds quite challenging! I’m so happy for you that everything is going well with your pregnancy. It brings me a lot of hope!

@Rebecca9876 thanks for your message. So great to hear that you became pregnant after your break! With all the miscarriages and TTC this year I can honestly say I’ve never been so stressed in my whole life, so it probably is good to take a bit of time to regroup before starting on the new plan.

@LRL12 thanks for your welcome and congratulations on your pregnancy! That’s really interesting to hear about your husband and the appointments. Did Mr S say anything about it? He said to me that really it would have been better if my husband were there for the first meeting. My husband definitely won’t be able to make it to all the appointments… Usually travelling between Ireland and the UK is pretty easy but Covid has made it a lot more difficult and he has limited annual leave. I’d rather he were able to attend the scan appointments if/when I’m pregnant, instead of being there for all of the pre-pregnancy stuff…

@rainwillmaketheflowersgrow thanks for your message. If I do decide to cut out gluten in the new year I will definitely be in touch for some recommendations!

@Jellystar23 congrats on your BFP! Such lovely news to have in time for Christmas. Does he do the gluten antigen test on everyone? I’m not sure if I got that one, although there were so many I’m not really sure! I asked him about doing the results on Zoom and he seemed really against it. I think his point was that it’s quite a lot of information to take in and it would be better to be there in person. It's a bit more hassle but if we get results from Mr S it will all be worth it!

@Everhopeful35 ask away!!

So, it varies. I’ve had some times when I’ve had bright red blood and that is the scariest (especially when there are clots too) - in those circumstances esp if it’s a lot and/or there is tissue/clots coming out I definitely go for a scan. But most of the time it’s old brown blood (and smells a bit... sorry tmi!). That I’m slowly learning to live with and not get immediately checked/wait until the next Dr S appointment.

I’ve generally found that even when I get bright red blood it usually turns brown fairly quickly and then it stays brown for a few days. Then it stops. And repeat a few days later... But even during those days I’m bleeding it can stop one day and start again the next, it’s totally unpredictable. I find the stress and worry of it exhausting but am telling myself it’s ok as that’s what I keep being told.

I feel like whatever is causing the bleeding, it builds up then releases, causing some fresh red blood to come out and then lots of old brown blood after that. I think the build ups sometimes also lead to blood clots and those can come out in chunks.

Be prepared that if your bleeding is like mine you might get tissue/clots at some point (it looks like flesh, there’s no other way to describe it...) - that is the scariest. Last time I was convinced it was the baby, but now I know it probably won’t be. But if you pass anything like that definitely get checked ASAP.

I don’t get pain but I do feel a bit sore and just very tender. I’m super careful when I’m bleeding though and don’t do a lot as even lifting something can cause it to get worse.

My next scan is Wed 23rd. Am nervous but trying to keep the faith that it will be ok. I’m really hoping it’s good news for Christmas esp as ours got totally cancelled tonight, being in tier 4...

Is yours still Tues 22nd? If so I have everything crossed it’s going to go well! Xx

@NessyT91 🖐 I am Irish too. We both went over for the first appointment a few weeks ago but he was flexible with the results. He seemed to be very flexible / open minded about scans when the time comes with COVID, given it's impossible to keep flying over every 2 weeks at the mo and then quarantining! Hopefully he wont change his mind :)

@Everhopeful35 lovely update. I hope they keep coming x

@NessyT91 it’s been THE most stressful year right?!! If you enjoy yourself and have a drink, have one for me please as I would frankly kill for a glass of wine (or anything really) after what 2020 has been like 🤣 x

hello ladies,
I had a MMC in June. Since than I could not get a BFP. Every month I am having a severe rash around from 7 to 9 DPO. I start itching after touching anything uncooked and this condition disappears once I get my period. I develop allergies at the embryo implantation time and sudenlly all alergies dissappear for the rest of the month, it has been such after we started to TTC after my MMC . I am from Italy, living in Italy and could not convince my doctor, but I am a pharmacist my self and I will use the Prednisone this cycle, could you explain me your experinces, details that you notice about this medication I want to go with 5 mg, and progesterone 200 mg, once I ovulate? is this what you ladies do ? Prednisone can prevent ovulation, it can mess up the hormonal balance, did you experience any delay in your periods? how many cycles later were you able to get BFP on Prednisone treatment. I also need to say I am trying natural conception, not IVF. I will be very thankful if you share your experiences, best wishes to everyone.

Hi @littleangle46 - many of us here are treated by Mr Shehata and are all under different treatments, which are individualised for our different issues. I personally don’t feel comfortable advising you to do something if you aren’t under specialist care as these drugs are quite serious, especially pred during the pandemic, and we are regularly seen by him and scanned etc to make sure things are ok.

I don’t have any side effects from pred except the common ones of insomnia and hunger. It has not affected my cycles at all and I got pregnant first time on it.

Good luck, I hope you go and see a specialist who can help you x

I’m having a bit of a panic. I did a clearblue how many weeks on Weds and it came up 1-2 weeks. I’ve done one again for some reassurance that the pregnancy is progressing and it still says 1-2 weeks even though I am 5 weeks today. It should says 2-3 weeks or 3 weeks + at 5 weeks. Not sure what to do. Wanted some reassurance and it has backfired!

@Rebecca9876 Thanks for your response - it really does help to calm me, knowing what to expect. Thankfully the bleeding has only been old blood today and fairly manageable, but I haven't been doing a lot. I feel for you - like you, we're in tier 4 and Christmas is cancelled. But on the plus side it does take the pressure off, especially when I'm never sure what's going to happen next with this pregnancy. Good luck for your scan this week! I hope all goes well and that they can maybe provide more detail on where your bleeding is coming from now. Our scan is meant to be Tuesday but my husband is reluctant for us to have it now, given we've had positive news and it'd be nice to just get through Christmas now in that bubble. We're going to talk to the nurses tomorrow and see what they say. But I'll be in the clinic anyhow, having intralipids. x

@Everhopeful35 no worries, sorry it was a massive essay!! I think you will still need the scan - they have told me before that they won’t do intralipids without first doing scans. But obviously ask them and see. Yes to the plus side of no Christmas - ours was a small one anyway as I’m still effectively shielding on the pred, but my parents were coming over and now I’m slightly pleased our house can stay a tip instead of needing tidying first ;)

@NICK7nick7 sorry it’s worrying. I always swore by Clearblue for all five pregnancies I’ve had (one successful, one includes this one) and had no issues, but they did also tell me of two impending miscarriages... But in my case my levels went down after going up first. They don’t necessarily move up a level bang on a new week so I wouldn’t read much into it just yet if you’ve only just hit 5 weeks, especially if you don’t know for sure exactly when implantation happened. It also all depends on your own hcg levels and they vary enormously from person to person. If you’re worried I’d recommend an hcg blood test with a doctor and another in a couple of days to see if they are rising - it’s the most accurate way.

That said a couple of weeks ago a couple of the other ladies were dead against Clearblue and said they don’t trust them after having issues so you may not want to rely on them anyway (I can only speak from my own experience of them which was always accurate) x

@Rebecca9876 thank you, will give it a few days and test again and then if still no change see if my GO can do the HCG blood tests xx

@NICK7nick7 I'm one of the ladies against Clearblue, may have posted about it some time ago. I ended up doing a blood hcg test as was so worried. My hcg was well above the 3+ threshold (thousands above!) and Clearblue still showed 2-3 weeks. I kept testing and then it went to 1-2 weeks, I think it was a faulty test, but almost gave me a heart attack. Before this happened, I had had a good experience with them before. You just never know. Blood test is the only sure way.

@Wireless77 thank you, that’s reassuring to hear. I’ve been really worrying so called my EPU to ask about HCG blood test and they have offered me a scan on Wednesday and said they can give me HCG blood tests if they can’t see much which is amazing.

That’s great @NICK7nick7 it sounds like you have a good EPU nearby!! x

@Rebecca9876 they are usually awful! They were a Covid unit during my last miscarriage so there wasn’t an EPU at all!! Surprised by them tonight but really pleased xx

All these new restrictions and the new strain of the virus are really making me worry about my potential treatment with Dr S. I work in childcare - I can’t social distance or shield, my job involves mixing households/close contact. I don’t see how he could prescribe me immune suppressant drugs. Does anyone have experience of this and know what he will do in this case? Does it reduce my chances of success if I can’t have the full treatment?

@Tinpo he really didn't seem worried about me being on hydroxy with Covid. Someone I know is a primary teacher and also seeing him and on hydroxy and again he wasn't worried. He said you may pick things up more easily. I think if hubby wasn't a teacher I'd be on pred but he was confident hydroxy would do the job. He tests how effective the treatments are so if he doesn't think it will work I'm sure he will say!

@Tinpo, I'm also on hydroxy. I was prescribed pred originally but was switched to hydroxy before I started on the pred because of covid. I was initially worried, both about whether hydroxy was as effective and also if it was actually safe re covid. But they reassured me that hydroxy puts you at no higher risk than the general public (I'm a teacher so this was important!) and I'm now 17 weeks pregnant so it seems to be effective :)

@Tinpo I don’t think hydroxy is a problem but pred is obviously different incl the dose. I tried just hydroxy at first but my bloods showed my NK activity/levels went up not down, so we added pred in Sept. I was on the full dose (some were on a lower dose due to Covid) but we discussed it with him in clinic and did a risk assessment before starting treatment. I have been shielding as much as possible in the last few months (weaning off now and only have a couple of weeks to go). I think your best course is to discuss with him in detail your own exact situation - my guess is he will prefer to start you on hydroxy anyway and clearly it alone (plus cyclogest etc etc) definitely works for some (and my levels were unusually bad - almost 4%). I have to say this new strain is concerning and I’m not sure I would want to start a full dose course now anyway x

Thank you @Rebecca9876 @rainwillmaketheflowersgrow and @Hippo20
It’s a lot to consider - I’ll have a chat with him about our situation, but right now I feel like it’s possibly not a good time to have a high risk pregnancy. It’s all so scary.

Hopefully the hydroxy will be enough for us, but as we have later losses and suspected CHI he did mention that he would rather over-treat me, so I feel like pred might be necessary. Guess I’ll have to wait til out next appointment and see what he thinks!

@Tinpo I’m also a suspected CHI and only on hydroxy plus intralipids as my NK cells are highly activated. From what I’ve read online, Hydroxy is the standard treatment for CHI plus sometimes treatment to stop blood clotting.

@NessyT91
He really didn’t mention my husband that much tbh, I said that he worked in Paris and obviously with covid couldn’t come but he didn’t seem to mind and questions he had about his health I made sure I knew.
When we first made the appointment flights to London to Paris we’re daily so didn’t think it would be a problem for him at get back but obviously covid messed that up for us.
I emailed the clinic before my results appointment and got them to send me a copy before my appointment so I could send them to my OH so we had some idea before I saw Dr S what the possible problem was which was great to be able to discuss this before I met with him again but tbh what ever he recommended or said to do I said yes to then discussed with my OH.
The only thing he mention was him having the sperm fragmentation test which was impossible for him to have with being away.
Luckily he was able to come to our 8wk & 16wk scan and the rest of the time my mum came with me or my sister so I always had someone with me incase I missed any thing, sometimes found it but overwhelming and a lot of information to take in so having someone with me really helped.
Hope this has helped a bit for you,
Take care everyone xxx

Thank you so much @Jellystar23 - that’s very reassuring to hear!

@NICK7nick7 I hope them sticks are wrong and the scan goes well on Wednesday x

@LookingforAnswers86 thank you, me too! Xx

Hi everyone, I hope you don’t mind my dropping into this thread. I’m about to go through my fifth chemical pregnancy and I just feel so despairing. I’ve recently been diagnosed with raised NK cells, positive ANAs (non-specific marker of autoimmunity), MTHFR mutation and blood clotting issue. We’ve been doing IVF and in this latest cycle, we did so much that was different - IVIG, hydroxycholoroquine, methylfolate for the MTHFR, tested embryo and precise timing for the embryo transfer from an ERA test. But we’ve had the same result as so often before - faint positive, too-low HCG.

I wanted to see if anyone had any ideas for who to see/what to explore - I do feel that immunology is my main issue. Otherwise, just stories of hope and/or commiseration - I feel so sad. Thank you x

Thank you x