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

[GillAwaiting]

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

Well my sis and her hubby have donor egg, she was 45 and he was 60. They now have a 2.5 yr old and he just turned 63! If they can do it - anyone can. Sis is now going through menopause.

I got good numbers on the beta hcg, they said I didn't need a retest but my bbts have been dire. Need to stop temping. Im hoping that being on estrogen as well as progesterone is throwing things out for me and that and not sleeping and peeing every hour. If anyone has any thoughts on this I would really appreciate it. Doing intralipids on Monday morning so I booked another beta hcg test for then too to either ease my mind or confirm another m/c.

 

[_Nell]

Gill - stop temping hun, you are spot on the estrogen will be throwing off your temps and unless your using progesterone shots the suppositaries also often don't raise you temps (even without estrogen). You don't need the stress of temping right now.

i hope the beta on monday will bring you some comfort.

 

[Reb S]

Gill, fingers crossed for your beta tomorrow, let us know how you go.

 

[GillAwaiting]

Hey guys, thank you for all the kind wishes. Thought I'd come back and tell you my horror stories. Beta last Friday was 467, then on Monday (72 hrs later) only 694. Wasn't looking good. I was freaking waiting for another m/c. Cons took me back today Wednesday, 48 hours later for a scan and another bhcg. So after thinking we were going to m/c, it turns out to be one vanishing twin. One embryo seems to be doing what it should and the other one is just a dot, going nowhere. Bhcg was 1800 today, waay more than doubled in 48 hours. She said the initial numbers were very high and she was planking herself in case I was having triplets. She said today my uterus is v.small. (Im only 5ft so this is not surprising news!) So apart from all the other drugs, doc has now put me on pregnyl injections twice a week. It's been a nerve wrecking few days and we are only at 5w+1dy. Temping has gone out the window completely. This might go somewhere to explain what was going on though!! Hopefully all these drugs and injections will pay off. My head has blown up like a balloon from the steroids and I've started referring to myself as the stay puff marshmallow man! DH told me he didn't think it would get bigger but it did

It it all works, it will be worth it.

 

[Reb S]

Wow, Gill - that's quite a tale! How do you feel? You must be delighted that one bean has stuck - hope you're not feeling too sad about the non-stick one. One is better for both of you!
Yeehaa! You're pregnant! x
Shame about your head...!

 

[GillAwaiting]

Things not looking good. BB's stopped being sore fully today. Con's put me on pregnyl shots to try to sustain pregnancy and bb's stopped being sore a few hours after I started them three days ago. With all the other drugs I just don't know what's going on. With 2 previous m/c's, it's hard to be optimistic. If anyone out there has any experience of mixing all of the above plus progesterone and estrogen with pregnyl, I'd love to hear it.

 

[Reb S]

Gill, I've got my fingers tightly crossed for you. I guess that all the meds will be messing with your symptoms. I don't have any experience with pregnyl etc. Keep hoping and let us know how you go xxx

 

[CocoCrystal]

firstly, congrats to all the ladies who are pregnant through steroids and good luck to all those who are trying!

I wondered if you could help me out with some answers on steroids and clexane please?

Can you tell me what doses you were on of the steroids and when in the ivf protocol that you started and stopped them? Can you stop them if you get pregnant?

Also for the Clexane, what dose did you take and when did you start taking it?

Did anyone take baby aspirin as well during the cycle?

We are starting our 4th and last ivf protocol soon and later this afternoon we have to go and speak to our doctor so id like to propose that we now try these after 3 x ivf failures, 3 x iui failures and 3 x FET failures!

 

[_Nell]

Coco - I would really recommend moving to a clinic or working with an immunes Dr that is practiced in prescribing the extra meds tbh. I think most ladies (myself included) have had tests that indicate they need the steroids and clexane.
Some Dr.s will prescribe empirically (mine was going to then opted to test) usually at lower doses of 10-15mg a day from ET.
It's possible that taking steroids or clexane when you don't need it can reduce you chances of implantation.

 

[CocoCrystal]

Coco - I would really recommend moving to a clinic or working with an immunes Dr that is practiced in prescribing the extra meds tbh. I think most ladies (myself included) have had tests that indicate they need the steroids and clexane.
Some Dr.s will prescribe empirically (mine was going to then opted to test) usually at lower doses of 10-15mg a day from ET.
It's possible that taking steroids or clexane when you don't need it can reduce you chances of implantation.

Thanks for your reply. I live in Holland and unfortunately you cannot just pick and choose which hospital you go to, our insurance company picks one and thats the one you go to sadly! They dont really believe in all this immune testing here and claim there is nothing medically proven to suggest steroids make a difference. I beg to differ. They may let me take them this cycle though since we have had so many failures and approaching my 40th birthday, to be honest ill try anything that may help. I wished i could have the tests and support we want and need but it simply is not an option, its either do the ivf without trying the steroids and quite possibly face another failure with no more funding or try the steroids in the hope that they give us a better chance of success.

 

[_Nell]

It's not too different here tbh, it's just a handful of clinics that support it and we have to pay to cycle OOP for the full cycle to get the meds.

Good luck with your cycle, I hope your Dr is willing to try - I know what to feels like to be on an uphill struggle with asking them to listen.

Could you consider an IVF cycle in London maybe (or elsewhere is Europe even?). It might work out more expensive (though the pound is in the toilet!) but if it's what you need then it could be worth it?

 

[Reb S]

Hi CocoCrystal - sorry to hear about your lack of IVF success. Nell has said it all really - I think we both paid £££££££££££££'s to get our testing, which is controversial and not universally accepted, etc. Good luck with finding a solution.

Anyone heard from GillAwaiting? I'll go do a search to see how she's doing. x

 

[GillAwaiting]

Hi CocoCrystal - sorry to hear about your lack of IVF success. Nell has said it all really - I think we both paid £££££££££££££'s to get our testing, which is controversial and not universally accepted, etc. Good luck with finding a solution.

Anyone heard from GillAwaiting? I'll go do a search to see how she's doing. x

Hello there! You wouldn't believe the next twist in my tale. Last I left you, I'd had a scan and they could see everything looked ok and the betas were back where they should be. Well I had an apt for another scan the following week and a few days before it I felt all the symptoms leave me. I stayed in bed and cried for a whole day and said my goodbyes. The morning of the scan the clinic rang me at 8.30 to say my cons was sick and did I want to reschedule. I said I was sure pregnancy was gone and could someone else do it. So I went up with my mom to get confirmation. I was ready for it. One of the other cons scanned me and confirmed the bad news. THEN the next day my own cons rang me and said don't attempt to go off the meds, I dont believe it until I see it, come back up and I will rescan. I thought she was bonkers as I was sure it was over. Anyhoo, we went back up last Friday and there was perfect bean with beating heart at 6+3. As you can imagine I kinda went into shock.

So my insides looked like this - there was the empty sac (the vanishing twin) and the other sac had 2 embryos in it! One had a beating heart and right size, the other smaller and nothing doing. So it looked like I had twins in one sac at one point. Unfortunately the cons is gone back to see her family now for Christmas so I cant get scanned until the day she gets back, Jan 6th. Im freaking out over every niggle and back pain and Im still not convinced this is gonna be a runner. It's during this period of pregnancy time that the two pregnancies that ended in missed m/c's, stopped progressing.

Was buying some xmas presents in the book shop yesterday and passed the baby section and couldnt even look at it. I felt like a fraud. Like those things only happen to other people.

Im chanting to myself all day everyday to try to stay calm - you're on everything there is, there is no reason for this not to work.

Oh by the way, I asked the cons about the fur growing on my head from the steroids. She said when you stop them, it falls off!! I now look like a furry stay puff marshmallow man

 

[_Nell]

Gill, OMG I can't believe the first consultant told you it was all over, imagine if you'd stopped the meds that would be terrible.

Try to rest up and think positive thoughts, your little bean is a strong fighter

oh and you are really not selling the steroids - fur on your face?!!! LOL, i should hope it does fall off when you stop them.

 

[Reb S]

Gill - dear Gill, you poor thing! But look on the bright side - you are pregnant, and thank goodness, you're not having triplets! Here's hoping the meds do their thing and that this bean progresses to a lovely bouncy baby. And as to fur - it's good for the winter!

Nell - hope the down-regging isn't too horrendous.

We've decided not to go for it at the moment. I'm not sure why. We may go for it in Feb/March and I'm really hopeful for that. We had a few arguments about how we haven't been healthy enough and OH has put on huge amounts of weight and not been taking his vits so we thought it's only one more shot, let's be as healthy as possible for it. New Year, new regime for health! I may also try to get some DHEA to make my eggies youthful again..hee hee!

 

[_Nell]

Reb - that sounds like a logical plan to get everything in order first health wise and then see how you feel. Can't have been an easy decision though

Thanks for asking about my down reg, i'm only doing one single prostap injection at 21dpo and that's it, easy peasy - i did that a week ago. So far i've had nothing major side effect wise, i'm not spotting at all which is an unexpected bonus for me but i have been very crampy and full feeling , sort of like when stimming tbh

 

[GillAwaiting]

Well girls Im back again with another twist in my tale. Every week something new and awful. Had heavy bleeding last night after sharp back pains for a day. From having 2 missed m/c's before, I knew the sight of so much red blood was bad. Rang clinic this morning and went straight up for a thorough scan.

Turns out there is a hematoma there (some kind of blood clot). The bleeding has now eased into dark blood residue.

The embryo is only measuring 7+1 when it should be 7+3 and the heartbeat only 148bpm. Back up next Thursday for another scan.

Im to lay off the clexane and aspirin for a while and up the progesterone to 3 times a day.

When will this torture end?

 

[Reb S]

Dear Gil, I'm so so sorry this is happening to you and just before Christmas as well. I do hope hugely that it's just a false alarm. Baby is only two days behind and the heartbeat is within normal range. Please don't fret, keep calm and try to enjoy Christmas. Let us know how you go.
Thinking of you x

 

[GillAwaiting]

Oh girls the hcg injections are killing me. Been on them now 2 x week since 5 1/2 weeks and every injection gets worse, the symptoms lasting longer. Im due to take another one tonight and haven't gotten a reprieve from the last one yet. You know that feeling you get right before you throw up, that intense godawful feeling. Well that it what I have all the time, it never stops. Now I know why hcg is used for people on mad diets because you really can't eat much with it at all. It's just all compounding the misery. Scan on Thursday. This time we are both ready to say goodbye to this. We made the decision not to try to sustain the pregnancy with meds if it isn't where it needs to be growth wise. With our history of losing pregnancies at this point, it's starting to look like its something genetic, even though nothing showed up on any of the genetic and chromosome testing. We are thinking donar eggs and sperm. We could spend forever looking for answers and we don't have the time or money to do it so I think we will cut to the chase.

Gotta tell all you steroid ladies, the fuzz on my cheeks and neck is getting insane. It starts around my earlobes and goes right down. The battle between the steroids and the hcg is horrible. The steroids wanted me to eat all the time and the hcg doesnt allow it. If I get pregnant again, there's no way I will be doing the hcg injections. I'd stop them now but part of me wants to see the results of the experiment. Did they help or did they not. It would be nice if someone out there could benefit from my torture.

Hope you all had a good Christmas. It's really nice to have folks to talk to who know what all these meds are.

 

[Reb S]

Gill, very good luck for tomorrow, I truly hope it's good news. Let us know how you go xxx