The steroid junkies' perfectly unscientific medical trial

[Tasha]

Thank you Hope.

Your siggy makes me smile too. I have everything crossed that number six is sticky.

How are you finding the steriods?

 

[Hope39]

Absolutely fine, I've lost weight!! No insomnia, no hunger, no nothing

Oh apart from shit hair, my hairdresser actually asked me if I was on some sort of medication. I about chocked and said take your pic, then started laughing so she clicked I am pregnant. She is a mate of a very long time and knows everything.

I friend req you on fb too xx

 

[Hope39]

Mel

This is what Peace Baby wrote in steroid thread. i have pm her for you

Re:intralipids I got the initial prescription from Dr G and showed it to my GP. I wanted her to provide me with a repeat prescription and she did that but as a private prescription. Still it only costs £13 a bag and I go to a nursing company in central London to administer it. It still costs far far less than many of the doctors charge! Please feel free to pm if you'd like more ink

 

[Tasha]

Oh wow, that is fantastic. You know how nervous I am about tomorrows results and thinking I might need intralipids.

 

[Hope39]

I'm such a plank, I was meant to post that on fili journal

 

[Tasha]

Still helped me though x

 

[Hope39]

Here you go tasha: I've had this pm:

I got the intralipid administered by a nursing company in Central London called Independent Nursing Services. They are the company who does the intralipids for all Zita West patients. Generally you take your prescription to them and they provide a full service -I.e they provide the intralipids bag, the saline solution with which it is mixed and the administration of it. I am not sure exactly how much they charge for this full service, at the time it was about £100. I had already purchased my intralipid from a pharmacy so all i paid the nursing company for was the saline solution and administering fee, for this they charged me £81.50. I paid £15 per bag of intralipids from Ali's Chemist (google for details). During treatment a nurse checks your bp etc. I found them to be very professional and of course so much cheaper than the doctors !

 

[Tasha]

Thank you so much Hope (and to who sent you that).

 

[mandy1971]

Bump

 

[mandy1971]

Hopefully resurrecting his thread.... I got my bfp last week, currently 4+5 ish.... I had the unkc biopsy lSeptember and my level is 12.87% ( high end of normal is 5%)..I have tried prednisilone twice already...last summer after IVF 20mg from egg collection... Despite 2 chromosonally embryos being implanted no pregnancy took...
Had a natural pregnancy in July/august thus year and took 20mg from bfp.,got to around 7 weeks., flickering heart beat at 6 weeks... Progress for me as no heartbeat detected with all other miscarriages which all ended around 5 week mark...
My onsultant is Dr quenby who advises 20mg from bfp.,cyclogest 400mg twice daily from 7dpo...and no asprin.......
I've tweaked it myself this time and took 10mg prednisilone from 2-3dpo then 20mg from 4dpo.. faint bfp around 12dpo and increased prednisilone to 40mg..... Hoping this is my rainbow finally...
I'd love to share the journey...
No real symptoms this time,boobs definately have shrunk.!(not a bad thing for me...) I usually get boob discomfort even on 20mg prednisilone.... Had period type cramp at 13_14dpo... Nothing since...Fxd..
So until 22nd of November at first scan 6+2 its a game of patience..

 

[Briss]

Ladies, can I ask what tests have you done to find out if you have NK cells? I had biopsy 1.5 years ago it came as normal but I do not know if they were looking at NK cells. I really do not want to have another one done. Is it possible to just do a blood test to find that out? My thyroid and antibody bloods came normal, does it help at all? Our first IVF ended in chemical, I know it's too early to start suspecting immune issues but we are paying for the treatment ourselves and I really want the second one to work (we have low sperm count so TTC naturally just does not work for us, it's been 3.5 years and not a sniff of a BFP until we tried IVF). I know NK cell test must be expensive but it's cheaper than wasting another IVF.

 

[Hope39]

Hi briss

Dr Shehata tests nk cells via blood and can be seen on nhs, you would only get a referal if you have had recurrent miscarriages

Professor Quenby does a uterine biopsy to test for them but again you need a recurrent miscarriage referal and she charges £360

You could see a private doctor who tests nk cells via blood but its a Chicago level 2 immune test, bloods get sent to Chicago. Just to confuse you even more, some girls send blood themselves via FedEx and a lady on fertility friend is very good at translating results......

 

[Hope39]

Mandy I hope my boobs don't shrink, I've lost near on 3st and they've shrunk enough already.......

 

[petitpas]

Hi there! :wave:
My bbs shrunk whilst on the steroids but I can assure you that they came back big-time afterwards! So no need to worry about such things, they really are just temporary.

I saw Mr Shehata privately. He checked all the tests I already had and then just ordered the blood test for nkcells.

Good luck to both of you!

PS: Mandy, any reason why you aren't taking aspirin? I'd have thought they were throwing everything at you by now...?

 

[Tasha]

I saw Dr Quenby without referral, well I self referred, if that's any help.

 

[lexi374]

I saw Prof Quenby without a referral too, I just emailed her. Good luck x

 

[Hope39]

Pip you should share a pic of your sticky steroid baby or do you keep them to your journals only?

Xx

 

[petitpas]

Hope, there are some pictures in my journal. J is also my avatar. It was the first time he said 'cheese' to the camera.

 

[Hope39]

Ha ha, didn't notice your avatar. Xx

 

[petitpas]

You'll have your own gorgeous avatar baby soon, I'm sure!