Immune protocol no Intralipids

[Catmum05]

Hi,I’m about to start stims on Wednesday.I have two autoimmune diseases and have had very early losses.Tjis is our first round and we are having icsi.I take thyroxine for underactive thyroid.
It’s our one and only nhs round and I’ve been given steroids,blood thinner,low dose aspirin and progesterone. My question is have these medications worked on their own for people or did they only work with intralipids added?
We should know if it’s work around Christmas I don’t know if it’s the worst or best timing !

[Julie37]

Hi Catmum- love your name- I've got 2 cats!

I've just found out I've got NK Cells, and I'm heterozygous MTHFR and PAIP polymorphism (sticky blood). I've been prescribed steroids, clexane injections but the new brand name which I can't remember, low dose asprin and I am having intralipids. I'm an NHS patient and I've just convinced my GP to prescribe me the steroids and clexane thankfully- no hope with the intralipids though. Apparently they'll be £500.

I had the tests as I'd had 3 miscarriages so I knew something was off. I'm starting a FET with my next af.

Anyway why I'm writing is to say that sooo many of the girls I've met on the forum have had success with these drugs! I am feeling much more positive. I don't think they've all had intralipids.

I've just realised you write this a while ago. How is the round going?
Xx

[Beck69]

Hello,

Hope all is well and worked out for you.

I'm interested to see how you got on as we too are thinking of doing a cycle - using frozen for no 2 without the infusion?

Would love to hear from you?


Best wishes xx

[Beck69]

To Julie37- just wanted to let you know I have a successful IVF immunology baby from using - steroids, clexane, infusion and progesterone his such a happy baby - we were so pleased it worked after lots of biochemiclas and are discussing no 2 - good luck xx

[Julie37]

That's lovely to know Beck69! How many rounds did you try before? This will be our 3rd embryo- 3rd time lucky I'm hoping! I think tomorrow will be day 1 and I start the down reg drugs on day 21 so glad to be getting on with it! Xx

[Sofy36]

Hi,

I had a successful cycle in 2015 with steroids and intralipids. I’m now 37 and trying again. I think I have an issue with egg quality now but I do think it is interesting that on my previous tries when I had no steroids I got a bfn, this last cycle I was only on 5mg steroids and had a chemical pregnancy. So my next round I’m going back to full dose steroids. Xx

[Beck69]

Julie37- I had four rounds of IUI all ended in chemicals and one IVF with immune support after I got my results and was a BFP deleivered my little boy last Nov so worked first go on immune drugs with IVF.

Good luck

Sofy36
That's interesting was that all without the intraplid though?

I am planning on full dose of steroids but wanting to drop the infusion part this time.

My bloods shown - Pa1/4g/5g hetro & MTHFR homo gene mutation - so was on cleaxne as well for sticky blood risks when pregnant. Do you mind sharing what your bloods were too?

[Sofy36]

My first successful cycle I had both steroids and intralipids.
Last cycle that failed just intralipids.
Chemical pregnancy was intralipids and low steroids.
Upcoming cycle full steroids. I’m debating about the intralipids. By the time my next cycle rolls around I’ll probably add them in. At my review though we decided no intralipids.
I think there’s something to the steroids.
My consultant said there’s absolutely no proof intralipids work so why would I want them. However, why do they offer them then? Xx

[Beck69]

Mmm that is interesting -thank you for replying.

Mine wanted me to have the intralipds again - as it worked last time - but I'm nervous about them as now have little one to look after don't want to risk taking things unless I know I need them - he said I can re test but that's expensive so we were thinking a round without them and just full dose steroids and cleaxne.

He said I at least need the steroids so will definitely use them.

I'm going to double check at scan - we hoping to start this cycle so Jan

Scared and excited all rolled into one - don't want to get too excited in case we have to go again after that - but so she's not to.

xx

[Beck69]

Ps good luck - and keep us posted xx

[Julie37]

Beck I've got very similar blood issues to you- Pai-1 4G/5G and MTHFR but both heterozygous and also natural killer cells. I'll have to check what steroid dose I'm on but I know my GP was shocked it was so high. I'm lucky as my GP prescribed the inixia (clexane) and steroids so I could get it cheaper but they can't do the intralipid so we'll just pay for that.

That does seem ridiculous that a consultant would discredit something the clinic offers Sofy36, no one should be having it if there's nothing in it! My consultant was very honest that none of these immune treatments are licensed for IFV.

Good luck everyone! Roll in Jan so we can get on with it! Xx

[Beck69]

Julie37 I have slightly elevated killer cells too, forgot about that bit.

Did you say you have tried without the infusion?

I was on 20mg a day, 10mg before fell and 20mg after until 12 weeks - although docs kept me on till 17 until I saw a gyno at hospital when they took me off.

Luckily my docs covered it too those extras but not Infusions. xx

Good luck too you too.

[Julie37]

This is my first immune round, I've only just had the test results back. I've had miscarriages both times on the other rounds. My Dr says I need intralipids- 2 before and I think 2 more if we get a bfp. I'm willing to try anything really! Especially as the rest of the treatment is paid for on the NHS for this 1 last frozen embryo. The nurse explained that the intralipids calm down the natural killer cells.
Xx

[Beck69]

Oh totally agree we did too and it helps that docs too helping you as saves about £500 I think.

I had four infusions last time too - one before and three after.

Sorry I think I got your post mixed up with the other ladies

Keep us posted xxx

[Julie37]

Hope everyine had a good Xmas?

My day 1 came Xmas eve so I'll be back on the suprecur day 21. Tried to book my intralipid infusion but Care haven't sent my prescription to the medication at home company. I'll have to sort it out when they reopen on 2nd. Quite glad to be getting on with it, feel like the immune tests gave me a good break from it. Hope it's 3rd time lucky!

Xx

[Beck69]

Good luck - mine started same time but I'm doinbr natural cycle - this time with frozen embryo- I'm booked in for scan tomorrow- then care can let me know if I'm ready for this cycle or next - but I'm still debating the infusion and maybe just the steroids and clexane this time xx

[Julie37]

Does a natural cycle involve no drugs at all then? It is a hard decision regarding intralipids, I'd go with whatever the Dr recommends. Which Care are you at? Sheffield is totally shut until next week.xx

[Beck69]

Yea no stim drugs just the immune ones - they track natural cycle.
Northampton one they only close bank hols.
I'm going to speak with nurse tomorrow again about it x

[Julie37]

That's interesting. I'm guessing they have to check the lining and that you aren't ovulating then?xx

[Beck69]

The scan was to check all looked good to go ahead. All went well, however I really wanted to try a natural cycle and they want me to take estrogen which I'm not comfortable with. I took the pill years ago and had to come off as sent my BP up and I was told by docs never to take again. So I'm currently querying this with care.

The medical director would prefer if I use the infusion - I was really hoping to just have results enough for just steroids but seems it's a case of infusion - I feel like I need it explaining to me more.

To be honest at my appointment I didn't really understand what the consultant said but assume to have another I'd need to pay again.

I feel like each case should be case by case and in the appointment I felt more like they just follow a set guide rather than individual guides - if that makes sense.

I'm just very nervous about having too many meds when I have my little boy to look after, I know it may sound silly but his my priority now - before was different -when we first tried I did whatever-but now I feel I need more explaining to me and side affects understanding it all more etc.

Anyhow less of me worrying- hope all goes well and you get your sticky this month - we won't be starting just yet as have unanswered questions and I need to sort work out as only go back soon - feel a bit cheeky asking for more time out for appointments so will see when care can start me etc.

Best wishes xxx

[Julie37]

Best of luck to you too.

I know I needed oestrogen to make my womb lining thick enough, I wonder if that's why you need it too? I ended up having to have a higher dose and anotherweek on them as my lining took a while to respond.

I think it's really sensible to question the side effects when you already have a little one at home to think of.

Please let me know what reasons they give you for all the meds. I don't think it was ever fully explained to me either!

Xx

[Beck69]

They said it's to help the linning but I've never been aware that was a problem - a really good gyno I saw at the start of my fertility said my linning and egg quality is brilliant - so I don't know why they want to give me them. I didn't have it last time and today I was told my womb lining was thicking up nicely.

I think it's just to give it that extra boost but let's see what the doc says to me next week.

will keep you posted xx

[Julie37]

Yes do.

Just read this article about intralipids: http://www.redbookmag.com/body/pregnanc ... iting-for/

Xx

[Beck69]

Julie37 thank you for this - it's very useful and answers my worries - thank you so much for sharing xxx

[Julie37]

No probs. Care could do with some handouts spelling out exactly why/ how things work. I googled NK Cells after a friend of mine who suffered 6 miscarriages before discovering she had them said that some celebrities had spoken out about them, there's quite a few good articles online.
Xx