IVF with intralipids, steroids, aspirin and heparin...?!?! Anyone else?

[Reb S]

You can see from the thread title what my issue is! I'm contemplating doing my 2nd and final IVF and not only am I faced with IVF over 40 and all the issues that raises, but my immunes testing has come back with MTHRF and raised NK cells. The FS has said I would have steroids from stimming until - (assuming pregnancy) 12 weeks, plus intralipid IV's, once on EC day, and then two more; plus aspirin and heparin. It seems like a LOT of drugs.
Does anyone know anything about this stuff, or has anyone else taken it all?! I would love to hear of success after taking all these drugs, or any advice anyone has got as to whether to try or just give up in the face of pretty bad odds...
Thanks!!!
Reb x

 

[_Nell]

Hi Reb

It's good in a way you have a bit of diagnosis, it means there's a great chance the extra meds will work for you.

I was due to take much the same as you've listed this current ivf cycle, but as i only saw Dr G half way through i didn't have time for clexane while stimming just post ET.

Unfortunately my cycle went a bit off, my lining was just 6mm and so my pg odds v low, I opted not to take the clexane and save the big guns for what will be my last round.
However, i do finally have some frosties so will be trying a fet with the whole lot in a few cycles time.

I have to be honest i'm a bit pretrified of the clexane. The aspirin and steroids have been fine and the intralipids is just a food/soy mix so not so scary to me. With the clexane i'm worried i'll run out of spots to inject and of course once i start if i get a bfp i can't just bottle out and stop.

However, i had a thread asking about clexane and both ladies who replied were pg.....so i see that as a great sign!

Good luck - where/when are you cycling?

 

[Reb S]

Hi Nell and thanks for replying! It's great that you have frosties! My last cycle we just made it to blastocyst but none of the others could be kept - seems a shame when I had 18 fertilised eggs! (bit of OHSS)
If we cycle (still under debate as my odds at my age are less than 13%) it'll be just after New Year, I've just hit Day 1, so probably start down-reg about the 5th..urk! Means I have to be good over Xmas...I was going to start last week, but had pneumonia!
I know what you mean about running out of spots to inject - last cycle I was SO glad to stop and this time (if I got BFP) I'd be going till week 12!
Also - don't steroids make you puffy and your hair fall out?! That's what I thought, hope I'm wrong!
I'm at the Lister, not Dr G, but after my mc I had a hunch and made them test me - just as well, considering what they found! You say this is your last round too - is that age, money or just had enough? How many times have you IVF'd?
x

 

[GillAwaiting]

Hi Nell and thanks for replying! It's great that you have frosties! My last cycle we just made it to blastocyst but none of the others could be kept - seems a shame when I had 18 fertilised eggs! (bit of OHSS)
If we cycle (still under debate as my odds at my age are less than 13%) it'll be just after New Year, I've just hit Day 1, so probably start down-reg about the 5th..urk! Means I have to be good over Xmas...I was going to start last week, but had pneumonia!
I know what you mean about running out of spots to inject - last cycle I was SO glad to stop and this time (if I got BFP) I'd be going till week 12!
Also - don't steroids make you puffy and your hair fall out?! That's what I thought, hope I'm wrong!
I'm at the Lister, not Dr G, but after my mc I had a hunch and made them test me - just as well, considering what they found! You say this is your last round too - is that age, money or just had enough? How many times have you IVF'd?
x

Im on all that stuff including intralipids, 3rd month of it. Did TSI, then IUI and now ICSI. Egg retrival was yesterday. I can tell you that after 6 weeks my head started to look like a football. I've lost all definition and cheekbones and can no longer see my dimples!! It's mad. Also I had to wax my lips, never had to do that before. No hair falling out yet... I seem to have put on a few pounds but I think its mostly water retention to be honest. I've had 2 m/c, got the wrong antibodies, lots of other crap.

It will all be worth it if it works. They told me I would be on the clexane etc for the duration of pregnancy and would have to do more intralipids.

Also something else weird, everytime I do the intralipid infusion I get the nastiest taste in my mouth for ages. It's really horrible and cannot be gotten rid of. So strange.

Good luck with it all. xx

 

[Reb S]

Blimey you're scaring me! What do you mean your head looks like a football?! Which drug causes that and why?! Hope your EC went well and here's crossed fingers for fertilization x

 

[_Nell]

Blimey Gill that's scarey!

Reb - i think Gill is describing 'moonface' from the steroids - not everyone gets it.

I know what you mean though about worrying, i read the steroids leaflet and was petrified, so in a way i'm glad i've had 1 cycle with some steroids in (and then clexan and steroids for next cycle).
For me i haven;'t honestly noticed anything from the steroids at all, whether that would change if i took them for 12 weeks i don't know.

Sorry i forgot you were at the lister, i didn't realise they did that full a range of tests - it's good that they did though for you.

Re it being my last round, well i've done 3 fresh cycles, had 5 embryos put back in and so sort of feel I have to stop somewhere really. So a 4th fresh cycle would be my last, braving it with all the extra meds so i have 'no regrets' with trying really. I now have a little extra lifeline with trying a frozen cycle too though. Every cycle i've had problems with a thin lining and i feel like that's the real problem with me, if we can't fix that i don't want to keep going through all this with such tiny odds of pg (thin lining = rare for pg)

 

[Springflower]

Hi

Hello Nell again!

I used these drugs with my last cycle. I had full immunes with Dr Gorgy. It's the first time I've been pregnant and I'm pregnant with twins. Honestly I found the additional drugs fine. Please believe me when I say that Clexane is not a problem. I have to take it to birth and I've not experienced any issues. Yes sometimes I get bruises, but they are just bruises! I'm small and I haveny have a problem finding places to inject, if you are really worried then you can use your upper thighs as well. I may well do this as my tummy gets more stretched.

Also intralipidds are just soya and egg yolk. I would be very again if you had a reaction. Steriods aren't that bad either, they just made me eat like a demon!!

Honestly I'm so so glad I went down this route. Of course you have to do what you feel comfortable with. I decided to throw everything at my last cycle and put my faith completely in Dr G. Even if it hadnt worked I would have tried it and known that I'd investigated that avenue.

Good luck!

 

[Reb S]

Nell - wow, you've really gone for it! We swore after round 1 that that was enough, but then I had a really old fashioned protocol that meant I was d-regging forever. Disaster. As for the Lister - I kind of pushed them into the testing, as I had a very rare auto-immune reaction to antibiotics a few years ago and that made me put two and two together. Glad I did!
Moonface?! I'm going to google that immediately...

Springflower - fantastic news! 16 weeks with twins, congratulations! If you're small as well you must be getting really bumpy now! Thanks for the encouraging post x

 

[Springflower]

It's very cool. I'm looking very big already but its brilliant. Promise you all the strange drugs make it worthwhile.

 

[_Nell]

Thanks springflower, that's what I keep telling myself.

I'm going back to Dr G pre my FET I think, he originally told me to try the clexane this cycle post EC (but that was before the cycle went all belly up, then we agreed this wasn't the right time )
I read on another forum that clexane is best through stimming/pre O so i'm wondering if he'll prescribe some for my the whole of my FET and if it *may* just help me sort my lining too.
I've only had the basic immunes tests.....hoping he doesn't make me do the full lot (and more £) tbh as it won't change the treatment from my perspective, i've decided LIT and IvIg isn't for me (yet!)

Reb - Good luck hun, let me know how you get along with the meds too?

 

[Reb S]

Nell - we haven't decided to go ahead, yet. It's the elephant in the room and we never talk about it! We've got 7 weeks to decide. Basically I want to, but I'm scared to go through it all again; he thinks we're too old (we are!) Are you doing FET first, or fresh?
Springflower thanks for the encouraging words! x

 

[GillAwaiting]

Sorry for frightening anyone with the steroids! Yes moonface is most definitely what I have but it didn't start to kick in until after 6 weeks. It's not so bad. People have told me lately I look really well. I think the puffiness has ironed out the creases and wrinkles.

I seem to be experiencing OHSS and have to go back to clinic to be drained today. Please god the cycle won't be cancelled. The eggs are going to blast so chances are we wont have any to freeze either or we will have to make a decision and freeze them today at day 3.

 

[Reb S]

Oh Gill, bad luck with the OHSS. I had a touch of it, but not bad enough for any intervention. Good luck today x

 

[_Nell]

Gill - sorry to hear of the OHSS, i hope the pain eases ok for ET.

Reb - good luck with the decision, it's not easy to know when to go ahead and when to stop, I know we're close. I think we'll do a FET and then the last fresh but I plan to have a consult at a different clinic to see what they suggest.

 

[GillAwaiting]

Just thought I'd come back on here and say I seem to pregnant (2 hpts say I am and levels rising), beta blood tomorrow to confirm. So maybe all the extra pills and injections will be worth it..?? And the moonface? Loads more people have told me Im looking really well!! I think the rounded cheeks have taken a few years off

I survived the OHSS after getting drained of the fluid. It was a comedy. A massive male nurse putting his full weight on my stomack and 'milking' me while the doctor and nurse did the technical bits and measure what was coming out. And then I farted!! Legs in stirrups, big man pressing down on me, I couldn't help it!! I was mortified. Dr was decent though and didn't made an issue.

The night pees from the steroids are doing my head in though. Been like that since I started them but have gotten worse in the last week or so. More intralipids might be on the cards.

 

[_Nell]

Gill - congratulations that's lovely news

I think I mentioned earlier i was seeking a 2nd opinion, so it seems for our FET we will be doing steroids, clexane and intralipids too (and progesterone shots which i've never done). I'm nervous and anxious, but it seems like lots of women get pregnant with the extras.

Reb - any closer to deciding whether to go for it or not?

 

[Reb S]

Gill - that's fantastic news! And ha ha ha ha re the farting! That's hilarious!
Nell - we're at logger-heads. OH says he's too old and doesn't want to do it again. Huh. He's still having unprotected sex with me - perhaps I should with-hold, 'in case I get pregnant' ha ha! I'm biding my time to talk about it again, I can't believe he's giving up just when we've got lots more answers. Of course, we ARE far too old, but what the hell! When are you starting? x

 

[_Nell]

I'm not too sure really, I have to down-reg which i've not done before, so I'll take a single prostap shot on CD21, which I think will be just before Christmas. Woohoo menopause for Xmas, that'll be fun.

I'm really nervous tbh, I though a FET was going to be straightforward and well, now it's not. I don't know if i can keep doing this if it doesn't work tbh.

 

[Reb S]

Ha! Downregging - what glorious fun! All I can say is, keep the sharp knives locked away; get lots of booze in for OH; drink LOADS of water and remember that it'll all be over soon!
I know what you mean about keeping going - we're still trying to decide what to do - OH says he's too old...we've mentioned the adoption word - but not going there yet...that's a REALLY hard decision, for us at least.
Don't forget that compared to what you've already been through, FET IS quite straightforward. Come on, little frosties!

 

[_Nell]

I don't know, I think i'd take egg collection over Down regged menopause, steroids and clexane any day!

I'm sure when Christmas is out of the way and a fresh new year is ahead your decision will become clearer and hopefully you'll both agree on the way forward.