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Intralipid and prednisone

(9 Posts)
zoe16 Fri 30-Aug-19 00:40:52

Ladies please help because I don’t think I’m receiving proper treatment from my RE. I was diagnosed with high NK cells and got pregnant right away. My doc started me on intralipid, prednisone and progesterone suppositories right away.

HOWEVER he only gave me 1/4 bag of the intralipid and dumped the remaining amount! Given the cost of the intralipid infusion I was shocked! So I asked him if that’s all and he said yes that’s all he gives to his patients but it makes absolutely no sense to me. If I’ve got high NK cells what’s 1/4 bag gonna do??

For anyone who has received this treatment for NK cells please advise if you received the entire bag or not! I’m panicking that what he gave me wasn’t enough and I’ll lose another pregnancy 😩 I’m supposed to do another infusion next week and I would like to know what to do!

Also, he said to stop the prednisone at 12 wks but from what I’ve seen on these threads people are slowly weaned off. What the hell is he doing?! I highly doubt I’ll be returning to his office but I could really use some advice right now. Please ladies.

CucinaBreakfast Fri 30-Aug-19 01:10:22

Eek sounds really stressful. I had the full bag of intralipids, but it would be good to ask him why he cut it short and maybe request the studies he's basing that on. My fertility specialist was keen to show me and tell me the research basis for her decisions, particularly as intralipids are a slightly controversial given the lack of evidence with high study numbers.

I didn't have prednisone in pregnancy but i have taken it before (as have both parents for various things) and it is definitely the done thing to wean yourself off it. That concerns me most actually as it's the one drug I've had that the gp has been keen to explain exactly how that weaning process works. Can you get a second opinion?

zoe16 Fri 30-Aug-19 01:25:20

Cucinabreakfast....I asked him and he said he never gives his patients the full bag but didn’t go into his reasons for doing so. He did tell me it’s very controversial but I get the feeling he doesn’t totally believe in it or isn’t very knowledgeable about it because he keeps telling me it’s all experimental and might not work.

I’m 6wks and trying to get a second opinion but the doctor is booked up for the next few weeks and I feel I may lose my pregnancy before. I have my scan on Saturday and if all is well I’m planning to do the full bag for my next infusions as well as wean myself off the prednisone instead of stopping cold turkey. My husband was on all sorts of medications during cancer treatment including steroids and I remember the doctors telling us it’s very important to slowly wean off.

FingersXssd83 Fri 30-Aug-19 08:47:32

It's very dangerous to stop steroids like that. What dose was it? I was on 20mg and needed to wean off over a course of weeks.

itwasalovelydreamwhileitlasted Fri 30-Aug-19 13:38:51

Intralipids are quite controversial in the UK - there is no evidence that they make a difference and not every clinic offers it

Prednisolone is the standard treatment for NK cells and you should be on up to 20mg a day and wean off it gradually
You don't necessarily need it for the entire pregnancy - most people I know stop at 12 weeks

Allthebubbles Fri 30-Aug-19 16:38:48

I have high NK cells and had prednisone both times I got pregnant. I weaned off after 12 weeks, I think reduced the dose by a 1/4 over the course of a week. It didn't take long.
The first time I just had the prednisone (20mg) as at the time my clinic didn't do intralipids.
I also tried a cycle with just intralipids ( complicated reasons why they didn't want me to have steroids) and didn't get pregnant. So for my second successful pregnancy I had prednisone 15mg and intralipids but I think I would have been fine without them, maybe they were a good back up that let me have a lower dose of steroids,

I wouldn't worry too much and have a look on the Fertility friends forum for advice on tapering off prednisone.
Good luck with your pregnancy.

Lauren83 Fri 30-Aug-19 20:05:29

I weaned off pred from 12 weeks and was off them fully by 13, I wouldn't worry about the intralipids as there's zero evidence behind them, I believe they were actually created as a harmless placebo when studies were being done on another medication and the placebo became 'intralipids'

tryingtobebetterallthetime Fri 30-Aug-19 20:30:16

I have taken prednisone at high doses. I then have to gradually decrease the dose. It takes weeks and weeks.

If you are taking enough prednisone for long enough your adrenal cortexes stop producing cortisol, which is like prednisone, you have to wean off prednisone to get your own body to kick back in.

It depends on how much you have been taking and for how long,

It can be very dangerous to suddenly stop. Not to mention you will feel awful.

Speak to your doctor specifically about this issue. I have so much experience with prednisone for my colitis my doctors know I am able to wean myself slowly.

Sorry you are going through this.🌺

zoe16 Fri 30-Aug-19 21:54:28

I’m so grateful for all of your advice. It’s a shame we pay all this money to these medical professionals and have to seek advice on these threads when they leave us w/o complete answers. I’m on 20mg prednisone so I’ll ask him if I should decrease by 5mg every week until completely off. That’s if I reach 12 weeks 😩

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