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Immune/NK Issues - aka Pred Thread no 24!

999 replies

KittyKatSmile · 29/01/2020 21:53

An introduction to this thread. It has been running for many years and has proved a saviour for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in 

Tagging people from the previous thread but please tag anyone else I've missed.

@Chickjen @FrannyAnny82 @ginandtonicformeplease @HoldingOn2Hope @LockThatFridge @Luckyducky2 @MairMum18 @MrsMargot @weddinghelp1 @williteverhappen @Wishing5tar @zoe16
@Eeviee
@Ultra26

OP posts:
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16
KtAgs · 15/05/2020 10:06

@hippo. I think it's an immunomodulator. So it coats your NK cells so they are less reactive.

Hippo20 · 15/05/2020 10:07

@HarrietM87 @Crystal2020 so is it that they don't know how pred interacts with coronavirus (presumably it could help in the same way as hydroxy?) Whereas hydroxy is safer as they have trialled it in coronavirus patients?

As you can tell I don't know anything about how the immune system really works!

Eeviee · 15/05/2020 11:23

@Hippo20 hydroxy is an immune modulator,
where as prednisolone is an immune suppressant.
Hydroxy it's an anti malarial but is used to treat autoimmune conditions such as SLE (Lupus). Dr S has been waiting for weeks for data that it is safe to use with covid which he now has from PHE, hence why he's prescribing. Can you ask to be put on hydroxy instead as a teacher you'll be very exposed?

@FrannyAnny82 I did the test through Medichecks it was only about £30, fingerprick blood test at home. I've just got the results and they are normal, slightly lower end of normal but ok. 2.38 umol /L. If you do it I'd still go back to your doctor with results before taking. Hope you are doing as well as possible xx

Eeviee · 15/05/2020 11:27

@Crystal2020 sorry forgot your question! No I don't do detoxes, essentially the body has the ability to do this constantly itself, so yes I do try to support that by doing things like drinking lots of water, eating lots of vegetables etc...but I don't do any special 'detox' - things like NAC really help the process. X

Crystal2020 · 15/05/2020 11:31

Ok great to know @Eeviee. I was contemplating doing one in one of my pred free periods but obviously won’t now that I’m on the daily hydroxy. And sounds like my body has got it covered anyway! Thank you. X

Hippo20 · 15/05/2020 11:43

@Eeviee thanks. I have emailed the clinic to ask about hydroxy but won't hear back until next week. Fingers crossed they will be happy to prescribe to me too (I'm at Epsom so it is DrS running the clinic even though it's nhs).

Jorun · 15/05/2020 12:00

@HarrietM87, why do you say that as a private patient we have no choice if we are told to use intralipids? Did I misunderstand it? I personally don't believe in them, and going to refuse if it's suggested. Patient always has a choice in my book.

@HoldingOn2Hope, from what I've seen, cod liver oil is not recommented, it's the fish body oil that is preferred. Something to do with higher levels of vit A. Our resident nutritionist @Eeviee will correct me if I'm wrong.

Going to London on Tuesday for bloods. Praying nothing goes wrong with the trains, or I'll miss the o'clock deadline to be there :( Been struggling getting time off work! My hospital is so busy.

If anyone was worried about taking Hydroxycloroquine with magnesium, just space them out, leave fours between them, that will be plenty of time. Same with anything containing calcium/aluminium.

HoldingOn2Hope · 15/05/2020 12:14

@Jorun Oh Really? Dr S suggested Omega 3 so I've been taking the seven seas omega 3 fish oil plus cod liver oil capsules. Maybe I need to stop these then? What does everyone else take?
😐

HarrietM87 · 15/05/2020 12:16

@Jorun Mr S will insist you have the intralipids as part of your treatment plan. I haven’t actually pushed it but I imagine he will just refuse to treat you if you don’t stick to the plan. Your choice would be to take the whole treatment plan or none of it! It’s annoying. If you have any luck let us know!

KtAgs · 15/05/2020 12:20

@Jorun in order for Dr S to see you through the first trimester, i think they will insist on intralipids. That was my understanding from my plan, from talking to ladies here and Dr S. If you get pregnant and decide to leave his care, then you won't have to take them. Could be wrong though?

@HoldingOn2Hope I take the pregnacare with omega 3. But if anyone has any other recommendations about omega 3, I'll follow them.

HarrietM87 · 15/05/2020 12:27

@KtAgs and others re Omega 3 - the nurses told me the pregnancare omega 3 was what I should take. When you get pregnant you need to be really careful with fish oils because high levels of vitamin A are really dangerous in early pregnancy, and they’re often included in omega 3 tablets.

HoldingOn2Hope · 15/05/2020 12:30

@HarrietM87 oh no! I've been taking these for months 😑😔

KtAgs · 15/05/2020 12:30

Phew @harrietm87. They are expensive though. Not as expensive as the Impryl the clinic recommended my husband take. £120 for a 3 month supply. Yikes!

HoldingOn2Hope · 15/05/2020 12:35

I'll put a stop to them as of today! I've got some pregnacare plus omega 3 capsules so will start those instead. I'm sure I mentioned at my first appt what I was taking and he didn't say any different.

KtAgs · 15/05/2020 12:41

It's all a bit confusing though isn't it @HoldingOn2Hope? I specifically asked the nurses which omega 3 to take and Nicola said: 'We recommend any pre-conception multivitamin with omega 3, whichever is your preferred option.' But I had heard that about fish oils and Vitamin A.

HoldingOn2Hope · 15/05/2020 12:47

@KtAgs very confusing! I should have known but an area I didn't research. Oh well! Just had a nose on google and a new piece of research suggests that preg woman should take cod liver oil! Not that I will but there's so much conflicting info.
Will stick to the pregnacare ones from now. On the back of the bottle of the ones I was taking it just says Vit D and Vit E. but I guess Vit A is a natural source in fish oils anyway?

HarrietM87 · 15/05/2020 12:48

@HoldingOn2Hope it’s fine pre-conception, it’s just a problem in early pregnancy, so don’t panic!

HoldingOn2Hope · 15/05/2020 12:50

Shall I just stop stressing about this now? Or if I did get a bfp this month should I be worried? 😣

Immune/NK Issues - aka Pred Thread no 24!
HoldingOn2Hope · 15/05/2020 12:51

@HarrietM87 ok. I'm going to put the bottle away and not think about it. Oh the joys! I envy ppl that just fall pregnant and have no awareness of all this.

Jorun · 15/05/2020 13:18

Sorry if I caused anxiety!!! Wasn't my intention. My understanding is to avoid fish LIVER oil, and that fish oil extracted from the whole body if fine. However, my training in nutrition is minimal so I said I'm happy to be corrected.

HarrietM87 · 15/05/2020 13:45

@HoldingOn2Hope don’t worry about it! If you get a bfp stop taking it then and it’ll be fine 🙂

Countrygirl220 · 15/05/2020 15:48

Oh gosh, I've been taking OMEGA 3 which I've just looked on the packet and it contains fish oil as well, that's what Dr S said, but I guess I should stop that then?

@Eeviee the spotting seems to have subsided the last two days, so that's good. However, I'm currently mentalling about the fact that my very light nausea also seems to have subsided so now I think there's something wrong... I think I'm actually going crazy. They have offered me an appointment the week after next, apparently they don't like to do two scans within 2 weeks? How is it going with you? Have you made any progress with your other half?

@Crystal2020 & @peperethecat good news about your appointments, and that you're good to go, fingers crossed!

Also good luck to those testing soon!

Hope everyone else is well and staying safe x

peperethecat · 15/05/2020 15:53

Thanks @Countrygirl220, I've had the intralipids, so tonight I have to inject the first dose of Ovitrelle and then go and have sex! Doctor says to test on 1st June.

Is anyone testing soon?

HoldingOn2Hope · 15/05/2020 16:17

@Jorun not at all, I'm glad you highlighted it as I would have continued to take! Thank you 🙂

I'm testing on Sunday 😑

HoldingOn2Hope · 15/05/2020 16:18

@Countrygirl220 I think the omega 3 is fine to take it's just 'cod liver oil' that you need to avoid apparently.

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