Very high NK cells. Consultant reducing pred dose due to virus.

[opalescentblue]

Hello,

I was wondering if anyone was in the same position? I am on Dr S’s complex plan (25mg and progesterone). I had my first intralipids at 4 weeks and a scan today at 6 weeks that showed everything was in place.

Dr S is advising weaning every 5 days by 5mg to continue on 15mg and then wean off as you would starting 12weeks but down from 15mg rather than 25mg.

As someone with very high NK cells, this is terrifying. I’ve previously had 2 MMC at 11w and 8w. I have a 4 year old. Has anyone been advised the same? How do you feel about it? Obviously I’m more interested than surviving than miscarrying, but what a draining thing to have to go through right now on top of everything else!

Thanks for reading.

Omg really shocked to hear this - have you seen the pred thread? Lots of Mr S patients on there. I’m 6+5 on the plan but my next appt isn’t until 8 weeks- is he telling everyone to reduce to 15mg?? I was on 25mg for my son and really don’t want to take any chances with this one. I’ve been totally self isolating for the last week and hoped that would be enough.

He said that other doctors were advising this dose for people with chronic autoimmune issues. The ones that were able to reduce the dose, of course. He also said that perfectly healthy, young people with good immune systems and no underlying issues were sometimes having to be intubated and there simply wasn’t enough data to know why this was happening.

When I asked if being on 15mg vs. 25mg would make a difference in terms of fighting off the virus, seeing as your immune system would still be more susceptible to the attack, he said it would. He said if women choose to stay on 25mg, the clinic would support the decision, but they would have to fully isolate from their family (not really doable).

I had an eczema flare up in the 4 days between my positive test and stopping the 10-day course so my immune system will not be quelled with 15mg!

Still digesting... I wonder if I can continue on my original dose until the 8w intralipids, then start weaning down to 15mg. A rock and a hard place really...

I couldn’t find the pred thread, it seems to have disappeared!

@opalescentblue I tried to tag you in the pred thread but maybe it hasn’t worked - it’s on the conception board and called: Immune/NK Issues - aka Pred Thread no 24

Thanks so much for sharing this info. I’ve had to request my prescription by post and they’ve only agreed to give me enough for the next couple of weeks until my next appt, when I’ll be 8 weeks, but they haven’t said anything about reducing the dose. I’m also really worried about travelling to the clinic as I don’t drive and live 3hrs away. I asked if I could have more in case I couldn’t make the appointment and they’ve said no. I find it really disgusting and unethical tbh.

My husband, toddler and I have been in total isolation for the past 7 days. I think given the choice I probably will stick with the 25mg and just make sure we don’t leave the house!

Thanks @HarrietM87. I’ll dig up the thread later and post on there. One other thing: I asked Mr S if he had settled on 25mg as a minimum dose based on medical trials and he said he hadn’t tried to prescribe a lower dose. This could mean that 15mg might do the job? No way to know except by leaving yourself open to MC of course.

I understand the clinic doesn’t want to prescribe meds until they’ve seen the patients but these are not normal times! You should really push them on the inaccessibility/travel issue. You can say I’m sticking with the original dose and can’t risk getting on public transport, if that’s even an option into 2 weeks! I think we are going into a full lockdown by the end of this week.

Did you get this too?

Have they tested your NK cell count after the steroids? Mine was through the roof beforehand - four times higher than any level my consultant had ever heard of. The prednisolone (25mg) reduced it to approx 2 x higher. It was enough to carry DS to term and I weaned off from 10-14 weeks.

Yes @opalescentblue I did get that. Don’t know what to do tbh.

@GrumpyHoonMain no I’ve not had my levels checked since being on pred. They weren’t extremely high to begin with but very aggressive. I miscarried in the summer when I only started taking the pred from a positive pregnancy test - it seems I need to be taking it from ovulation as that’s the only time I’ve had a successful pregnancy - with my son in 2017/18 and hopefully now. With my son I was on 25 and weaned off it from 12 weeks.

@GrumpyHoonMain That’s really interesting. Is it standard to test again after starting the pred? I might ask for that the next time I am there. 15mg seems recklessly low... I don’t remember my figures, but they were both sky-high and aggressive. That said, both MCs made it more than halfway through the first trimester so I wonder if that’s relevant. Thanks for the tip.

@HarrietM87 I think it’s quite surprising how fast the advice changed from giving us the choice to reduce only yesterday to advising it strongly today. My tentative plan is to try and stay on the same dose until 10 weeks and start weaning down to 15mg thereafter.

Still thinking...

Also, he said to wean every 5 days but the advice says 3. What’s changed so fast?

@opalescentblue I feel the same way. Will try to discuss it with the clinic but I’d like to stay on the same dose for another week, to 8 weeks, then all being well go to 20 til 10 weeks and then 15 after that. I still feel very much in the danger zone with this pregnancy. My symptoms are really coming and going so I’m constantly anxious.

@HarrietM87 Completely understand the waning-symptoms anxiety. Did you have constant symptoms on the plan in your previous pregnancy? The treatment worked for you last time, there's no reason why you won't have the same outcome again. It's the waiting that's always so hard...

I decided to take 20mg this morning and am crossing my fingers. I figured I could wean faster to the recommended dose if I got sick so it seems like a good middle ground. It's 'only' a 5mg decrease, I suppose... I'm hoping to stick with that to 10 weeks if I last/can.

Hope you have a relaxing eve. Early pregnancy is stressful enough without this constant sense of impending doom!!

Yes @opalescentblue - impending doom is right! I’m still taking 25mg, for the next few days at least.

I had zero symptoms in my last pregnancy which I put down to the pred because it apparently masks symptoms, but this time I’ve had nausea on and off, sore boobs and terrible acne. I have a son so have been wondering if it’s a girl this time to explain the difference in symptoms. The nausea is really up and down which is what worries me - I usually feel ok in the morning, then some afternoons are bad and some are fine 🤷🏼‍♀️. How are you doing with symptoms?

I've got the sore boobs and nausea combo, but like you say, the pred is meant to mask the symptoms. I've had strong symptoms that ended in MC and a mild-symptoms pregnancy (expect for the nausea in the first trimester) so I know they're not a real indicator.

But I knew, without a shadow of doubt, exactly when the last two pregnancies ended and the scans confirmed my intuition. This one feels completely detached, I have no 'sense' about it at all. I'm finding the 5mg reduction quite hard. Severe fatigue, anxiety, brainfog, body aches. May be unrelated, but everything kicked in as soon as I started weaning down the dose. Hope you're feeling OK.

Hey ladies - I'm new to this thread (and to this whole site to be honest) but just wanted to say I'm with you on the pred journey with Dr S. currently in the 2ww of cycle one on pred and hydroxy etc etc - when I saw the advice from the clinic I was mortified so I can't imagine how you guys are feeling, it's such a tricky time and what a decision to have to make. They've advised those not already pregnant to stop entirely, but my OH and I are getting towards year 6 of this s**t and so the thought of waiting for what could be another 6 months is ... well, it's not happening, so a lowered dose it is and a hope it still works. Would be good to stay in touch on this thread - I am wishing you all so much luck. X

Hi @hrtbrk2, I’m also an unseasoned poster! It’s so frustrating, isn’t it? Were you prescribed the hydroxy from the get-go due to high NK cells?

The lack of clarity in the timeline is especially difficult. But they’re saying that, based on the previous curves, that the worst time for the U.K. will be April/May. This could mean that things are more manageable over the summer? But it’s clear this will be a long ride.

Are you going to try with 15mg? I’m currently still on 20mg but hoping to reduce it if my next scan is OK. I think with 15mg I could wean off in 3 days if I got sick and still be able to fight off the virus. Everything is so hypothetical!

Do keep us posted on your news. I do hope you get some good news very soon x

Just read this properly @hrtbrk2! When can you test? Good luck!

I was in the same situation and am now fully weaned off the prednisolone as of Thursday. I was also very concerned about coming off but my consultant assured me that as I had had the necessary amount of intralipids that was the most important thing and it would be perfectly safe now.

One of my friends is a senior consultant at Royal Hospital London and when he heard I was on 20mg pred he was extremely concerned as this put me in the very high risk category for catching a bad case of Coronavirus and his opinion was that it was very unsafe for me to continue taking it. He was adamant that I did not leave the house until it was out my system.

In these situations I think we have to trust the experts who have our safety as their biggest concern.

Thanks @Nimsay1 I needed to hear that. My initial response was to follow the new dosage instructions, but then I thought to push it to 8 weeks after I'd had my second intralipids.

How far were you when you started weaning, and how far are you now?

Just found this. Fairly sure this was what Mr S was quoting when he first mentioned the lower dose.

www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/03/CO0043_Specialty-guide-and-coronavirus_-MSK-corcosteroid_-v1-25March.pdf

I was exactly 6 weeks when I started weaning and am now just over 8. Weaning takes about 2 weeks so why don't you follow the consultant advice to start weaning now and then you'll be having intralipids just as your body comes off. The doctors wouldn't be telling you to come off if they didn't think it was important.

That’s sensible advice, thanks. I’m under Dr S who has advised to take 15mg until 12w before tapering off every 3 days. Are you following another consultant’s advice re weaning off completely?

This is interesting. www.google.co.uk/amp/s/www.wsj.com/amp/articles/doctors-try-steroids-to-treat-coronavirus-patients-against-who-counsel-11584878400

Yes, our clinic has advised all women to come off completely as soon as possible.

Don't forget there are many different types of steroids and huge variances in dosages, so I wouldn't be looking at news reports talking about steroid use as you don't know what sort of steroids, in what sort of dose.

We're prescribed prednisolone as an immunosuppressive drug, which right now doesn't sound like the safest thing to have in our systems if we do catch Covid.

Hi @Nimsay1 Yes, I understand. I meant it was an interesting read. The article doesn't advocate steroids use. In fact, it discourages it as it's unproven.

Wishing you the best of luck with your pregnancy, it's such a stressful time to be pregnant!

Lots of luck to you too. I'm sure we'll all be fine, just got to keep positive!