The steroid junkies' perfectly unscientific medical trial

[petitpas]

Hi, I thought I would start a thread where we can follow those of us who have suffered recurrent miscarriages and are now trying steroid (or IVIG or intralipids) treatment.

In future, hopefully we can show a good success rate and encourage others who are starting on this difficult path.

I'll start with myself:

Petitpas: 5 losses - started prednisolone Aug 2011 - SUCCESS! BABY BOY !

Mon_n_john: 35 - 5 losses - started intralipids Aug 2011 - SUCCESS! BABY GIRL!

Beachlover - on prednisolone since Dec 2011 -SUCCESS! BABY GIRL!

LeeC - 10 angels - started prednisolone Aug 2011 - SUCCESS! BABY BOY! !

Doodar - ICSI with steroids starting Sep 2011 - SUCCESS! BABY GIRL!

Lamburai - started prednisolone Aug 11 - sadly one more loss followed by more prednisolone and intralipids. SUCCESS! BABY GIRL!

Padbrat - 6 losses - balanced translocation - on steroids for 7th pregnancy - SUCCESS! BABY BOY!

Myjourney2011 - 4 losses - on Mr S's plan

Leylak - 1 loss - Hashimoto's - on dexamethasone SUCCESS! BABY GIRL!

Lawa - SUCCESS! 7 MC then baby born 11/7/11 with 20mg pred from BFP

BFPseeker - 3 losses - on Mr S's plan since Oct 2011

Filipenko - on steroids from Nov 2011 - baby sadly didn't make it due to a trisomy - SUCCESS! BABY GIRL!


Hopeful23456 - on steroids from Nov 2011 - SUCCESS! BOY AND GIRL TWINS!

Lisacn -2 losses - on prednisolone since Dec 2011

Lexi - 3 losses - started prednisolone on Prof Q's plan - chemical in Feb 2012 - SUCCESS! BABY GIRL!

Tansey - 3 losses and ltttc - on Prof Q's programme - SUCCESS! BABY BOY!

Amber3 - ttc with prednisone - adopted baby girl

 

[Mon_n_john]

Good idea Petitpas!

I am 35 - 5 losses (2 miscarriages and 3 chemicals) - started intralipid Aug. 2011 as well.

 

[petitpas]

Hi Mon! :wave: you are now on the list

 

[Brookegarrett]

Good luck ladies

 

[beachlover1]

ill be keen to watch this! ive had 3 losses, 2 then my son and now another one!

I have an autoimmume prob and have been referred to my local hospital where Professor Quenby has a clinic. she is going to biopsy me for NKc and maybe start me on steriods!

Im afraid to take steroids...whats the risk of cleft palate etc in the baby? I have daily steroid drops for my eyes (the autoimmume prob) and was always warned against taking them when preg.....well sorryi dont have a choice!!

What dose are you girlies on of Prednisolone? til when?

Big hugs and good luck!!!! xx

 

[petitpas]

I'm on 25mg orally every day from when I confirm ovulation (temping) until about 11dpo when an early test should be able to tell me whether I'm pregnant. Once pregnancy is confirmed I am to continue until 12 weeks and then gradually wean off.

There is a risk of cleft palate, but Mr S claimed none of his patients have suffered a case
To be honest, to me it's not the worst risk in the world and personally, I would be happy with a baby even with a cleft palate. It is something that can easily be treated in infancy and doesn't majorly worry me. Obviously, everyone has their own idea on what risks they can accept.

If you're interested in reading up more, here is a link to a study on the subject:
https://www.ncbi.nlm.nih.gov/pubmed/11091360

 

[beachlover1]

thats what i thought when my eye guy was giving me the big low down!!.....there are far worse things that could be up with bubs!! and 25mg is pretty low dose too.

I really hope it works out for you ASAP!!!! fingers crossed for a BFP xxx


PS.....i see you are buddies with Lamburai??? i remember her from TTC after my last MCs a year or so back!! any joy with her yet? x

 

[Mon_n_john]

No steroids for me. My doctor said I don't need them Go figure.

 

[petitpas]

Mon, maybe that's because you're on the big boys already?

Unfortunately, Lambs has had a similar story to mine. Hopefully she'll be popping in here sometime to add herself to the list and then register as a success story!

 

[Lamburai1703]

Howdy. I do remember you beachlover. I have now had 7 losses and joining the steroid band wagon when i'm ready.

 

[petitpas]

Oooh, there you are! Was about to text you but might get my knitting out now instead...

 

[beachlover1]

hey there!!! god, thats awful for you!!! im so sorry to hear that, i remember you had your second at the same time as my second......big hugs!! have you had the NK testing too then?

whats the story with you? x

I started steroids today for my eye condition, autoimmune and just for 7 weeks, this week im on 40mg. Im freaked out after reading the side effects!!! that was a pile of 8 tablets ;-(

 

[LeeC]

Hello All. Glad I've found the thread at last, thanks for the link Lambs.
Day 2 of steroids for me, looking forward to the moon face lol... x

 

[petitpas]

Today was day 3 for me - it was difficult! From lunchtime I started buzzing again and just could not stop. It was a bit embarrassing as I was with a friend and hot all hyped up on him. Thankfully, I'd given him some warning. Then I started having hot flushes. It got so bad that I had to leave the small well-aired shop I was in as I felt like I was burning up, really uncomfortable. I then picked a text argument with DH and cried - nice! Hyper, buzzing, yapping, hot flushes and moodiness all in one day. I hope my body gets used to this soon as I'm not planning on giving up just yet!

How is everyone else getting on with this?

 

[Mon_n_john]

Today was day 3 for me - it was difficult! From lunchtime I started buzzing again and just could not stop. It was a bit embarrassing as I was with a friend and hot all hyped up on him. Thankfully, I'd given him some warning. Then I started having hot flushes. It got so bad that I had to leave the small well-aired shop I was in as I felt like I was burning up, really uncomfortable. I then picked a text argument with DH and cried - nice! Hyper, buzzing, yapping, hot flushes and moodiness all in one day. I hope my body gets used to this soon as I'm not planning on giving up just yet!

How is everyone else getting on with this?

You poor thing! I hope those side effects improve quickly. I've had no side effect on intralipid.

 

[Carmina29]

Hi I need some advice. My name is Carmin, I have had 4 miscarriages and recently I was diagnosed with High NK cells. My level was 11.2 % and I was recommended intralipids combined with steroids. My problem is where to go for the treatment?. Do you need to go to a special clinic for the treatment with intralipds or your regular OB can order them from the farmacy? I don't know what to do.

I cannot find any doctor in Pennyslvania to do this kind of treatment in office. I appreciate your help.

 

[petitpas]

Hi Carmina, sorry to welcome you here
Unfortunately, I don't know how things work in the States but I expect that you would need to take the intralipids under medical supervision.
Who ordered the tests for you? Maybe they can help you out?
You could also try taking your confirmation of diagnosis and suggested treatment to your local doctor and ask whether they can prescribe it to you? It's a bit tricky as not many doctors are willing to dabble in immunotherapy as I think many feel out of their depth.

 

[Mon_n_john]

Hi I need some advice. My name is Carmin, I have had 4 miscarriages and recently I was diagnosed with High NK cells. My level was 11.2 % and I was recommended intralipids combined with steroids. My problem is where to go for the treatment?. Do you need to go to a special clinic for the treatment with intralipds or your regular OB can order them from the farmacy? I don't know what to do.

I cannot find any doctor in Pennyslvania to do this kind of treatment in office. I appreciate your help.

I'm sorry for all your losses Carmina. Your cells are actually in the normal range. Above 12 is what's bad (I have 20.6%). To get treatment you need either a reproductive immonoligist or reproductive endocronoligist. I suggest the RE as many insurances won't pay for RI. The intralipid is an intravenous treatment as must be done with medical monitoring in a doctor's office. Good luck!

 

[Carmina29]

Thank you Mon_n_john and Petitpas for your answer. I was told that 9.9 % is consider high and mine are elevated. I was offered IVF but we refused since we want to give a try on our own again. Dr. told us that IVF is an option but not absolute necessary in my case and the INTRALIPIDS & Steroids is a good treatment to help. In this two months I go crazzy because I don't know where to get the IL since my RE does not belive in NK cells theory.I even considered to go on Steroids alone but I was a bit scarred for the adverse effects and I'm a bit scarred to TTC again without any treatment.

I'm very happy to find this board. Now Mon_n_John you really have point -is 11% really really high? it is possible this level is not so high to require a treatment and so, maybe I don't even need the intralipids at all. Now I wonder we both talk about Peripherial Blood NK cells or Uterine Lining Biopsy for NK cells.
In my case I have the blood drawn and send it to the lab. Just want to make sure.

I looked all over the internet for the peripherial NK cells reference range but I cannot find anything. Glad I found this discussion board.
....
I really really appreciate your replies. Thank so much. It feels so great to know I'm not alone here. Hugs to you all!

 

[Mon_n_john]

My blood draw was peripheral as well. Most of the ranges you see online are peripheral blood. I don't think 11% is really high based on what I have read. Heck, as far as I know they are considered normal, even if in the high range. What part of the country do you live in? I'll see if I can find an RE for you that does intralipids.

Fair warning, it's not covered by insurance and each treatment costs me $750 so it's a bit pricey.