The steroid junkies' perfectly unscientific medical trial

[petitpas]

Beach, I hope the holiday is keeping you as relaxed as possible at the mo! Will you be coming back before your dreaded week?
I can't remember if you are on any blood thinners but if not it might be an idea to take an aspirin before your long flight back...

As for steroids masking symptoms, they did act funny with me. My bbs actually shrunk at first instead of growing as they normally do. I was really nauseous in first tri (still am now sometimes - today being a prime example) and thought nothing was masked until I stopped the steroids and threw up a few times. My doctor thinks (and I believe him) that had I not been on the steroids I would have been throwing up a lot. Steroids are sometimes used to treat vomiting and nausea in pregnancy.

 

[beachlover1]

Hey Petit.....its awesome you have got so far!!!

so far im fine fingers crossed!! im 6 weeks today....dreaded week is next week so we shall see. Am gagging at anything (nappy changes are tricky ;-) ) and feel sick permanently.....never had this so early before so im hoping and praying its a good sign.

great idea re the aspirin, not on it this time, strangely enough.....another thing i have done differently, ill go find somewhere that has the 75mg dose and pop one a day before the flight. With all being well ill be 8 weeks by then. Im remaining non plussed and kinda ignoring the thought of being preggers, at the same time being really optimistic in the hope that positive thoughts work!!!

hope alls well with everyone xxx

 

[petitpas]

Well, the little aspirins shouldn't cause any harm (especially since you've been on them before and did not spontaneously combust through a stomach ulcer).
The ones I take are US dosage - 81mg - and are considered ok the same as 75mg. Just in case NZ follow the US and you were left standing in the pharmacy wondering what to do...

Beach, I think you are on exactly the right track thinking as positively as possible and I am keeping everything (except ducky because I can't exactly reach him) crossed for you

Keep enjoying that holiday!
Xxx

 

[beachlover1]

hi All, im finally home!! ;-) had a scan today...........all looked spot on!!!!! ;-) 8weeks and 1 day according to my dates and 8 weeks and 1 day according to the measurements. HB looks good, im so relieved to have got over the 7 week mark.....a long way to go i know, but im hanging in there and crossing all for a scan in 2 weeks!!!!

Oh, anyone get a bit shakey on these Roids????? my hands are a bit shakey. i rememeber it from before now....is it just me???

 

[petitpas]

Hi Beach, congratulations on your fabulous scan!!! When are you getting your next look at your bubs?

I had the shakey feeling sometimes. They'd make me a bit buzzy and hyper sometimes, too.

 

[filipenko32]

Great news beach!!!!

 

[niknak242]

Can I jump in here? I haven't been around because knowing I had months to go before TTC again was so hard. But now, here we are, a month away!

I was diagnosed with High NK cells after my 4th loss. I also have Factor V Leiden. My next pregnancy I will be doing intralipid and lovenox.

 

[filipenko32]

Hi niknak welcome and sorry for your losses, so will you go for the steroids aswell. How much will you take and when from?

 

[lexi374]

Congratulations Beach thats brilliant news! Are you on meds from Prof Quenby?

Welcome ninak sorry for your losses fx for next time.

Fili hope you are holding up ok?

Hi pip are you and ducky well?

 

[petitpas]

Hi Lexi, ducky and I are doing well, thank you! We are on our last day of a holiday and will soon be back to our routine of blood tests, hospital appointments and scans...

Niknak, congratulations on heading back to ttc-land! Besides fili's question about steroids (will you be taking them along with the intralipids?), I just wanted to check that you would also be taking a baby aspirin every day? That is the most common way to treat Factor V Leiden (which I also have). The reason aspirin is given as well as heparin is because heparin does not cross the placenta but aspirin does and therefore it protects against clots on the baby's side of the placenta.

 

[beachlover1]

Hi Lexi

yes im under care of Prof Quenby. Steoids and progesterone. I go back in 2 weeks for scan 2....i hope to be 10 weeks and she will then reduce the meds if all is well. ITs gonna be a looooooooong two weeks xx

 

[GillAwaiting]

Beechlover 1 can I ask you about coming off the meds. Im currently 13w3days (i hope, last scan a week ago). My private fertility cons has me weaning off the steroids now. It takes 2 weeks to wean off, 5mgs tabs, 5 for 5 days, 4 for 4 days, 3..etc. Also just off the estrogen, clexane, progesterone (but I must admit Im still taking one suppository a day, cos Im terrified) I also decided myself to continue the low dose aspirin until I see the new cons at the public hospital. Its very scary coming off the meds and Im just wondering if Prof Quenby by rule gets people off the meds at 12 weeks. I've been on all these meds for months when treatment was back to back so its good to get off the steroids. The side effects have been horrendous. I currently have this massive load of fat on my stomach which I never had and started at about 6 weeks of steroids. It looks like Im about 6 mths pregnant and is quite embarrassing when Im so early on. (facial hair, peeing all night, ah I won't miss those things!).

Thanks. I'd love to hear anyone elses input for coming off the meds.

 

[filipenko32]

Hi gill, I can understand how scared you are. And i was on the steroids for my last pregnancy but unfortunately it wasn't meant to be, however my weight increase in a short amount of time was vast!! I'm glad to be off them now and the weight came off pretty quickly. With regards to coming off them, I know pip did (the poster who started this thread) and she is absolutely fine. I'm not too sure you should come off the aspirin or clex though. I think you're right to wait for a second opinion. I thought aspirin and/or clex were stopped at 34-36 weeks?? I think that is what Lesley regan recommends. Good luck to you! I remember reading earlier posts by you and you thought you'd lost this baby, I'm so happy for you that you're now 13 weeks!!

 

[lexi374]

Hi Lexi

yes im under care of Prof Quenby. Steoids and progesterone. I go back in 2 weeks for scan 2....i hope to be 10 weeks and she will then reduce the meds if all is well. ITs gonna be a looooooooong two weeks xx

You give me hope!

I saw Prof Quenby last Oct for the NK test, mine came back at 10.2%. Do you mind me asking what your result was?

Im just waiting on BFP now so i can get started on this treatment. I saw my gp yest with the info from Quenby and she said she will prescribe progesterone but not steroids as she could be struck off! She is going to contact the Prof i think and discuss it with her.

 

[beachlover1]

Hi Gill

Ive been on steroids back in july for 3 months for an eye operation, I was on 40mg 2wk, 30 mg 2wk then 20mg 3wk then each week after that dropped 5mg. It was absolutely fine i have to say!!

Prof quenby has me on 20mg from BFP then im on them til 10 weeks. At 10 weeks im scanned then i drop to 10mg for a week then 5mg for a week. Im not nervous about weening off them it was fine last time! I hate the side effects...i was asked at check in at the airport last week "how many weeks pregnant are you?" FFS!!!!!!!!!!! im 8 weeks......not even an are you pregnant? she didnt believe me and said i look more and have i got a docs letter?!!.....my doctor doesnt even bloody know!! So, yes i have a bloated tum, cant stop eating and the cellulite looking body is back ;-) but it vanishes REAL FAST when the meds stop i promise.

you defo dont need progesterone now, i come off that at 10 weeks.....as soon as you see a placent has formed the progesterone is not important.

As for clexane and aspirin....not sure.

Keep in there....second tri is sooooooooooo easy!!!! (i have a LO to prove it) xxxx

 

[beachlover1]

Hi Lexi


I saw Prof Quenby last Oct for the NK test, mine came back at 10.2%. Do you mind me asking what your result was?

Im just waiting on BFP now so i can get started on this treatment. I saw my gp yest with the info from Quenby and she said she will prescribe progesterone but not steroids as she could be struck off! She is going to contact the Prof i think and discuss it with her.

OMG I cant believe you GP said that......im sure thats a over reation as its not really true if shes advised by a consultant. Mine didnt bat an eye lid!! She will if shes advised by prof that its ok surely.

My NK came back at 6%........not too high at first glance BUT i was ALREADY on steroids and had been for 2 months at the time!!!!!!! so without steroids she though it would have been up around 15% or so!!!!


good luck for the BFP!!!!

 

[beachlover1]

these progesterone supossitories/pessaries whatever things.......i cant bare them.

OK TMI alert......if i put them up my bottom (yuk) it gets sore after a few days, but i dont get it running out!! If i do them vaginally....they run out all over the place as they melt if i stand up, so i have to lie down. This is fine at bedtime, but not morning. Do you guys find this???? i cant bare them....the trickling out bit freaks me out.....i keep doing knicker checks for blood!!!!!!!!

Also im paranoid some of my beloved progesterone is trickling down my legs and being lost!!!!!!!!


gross i know......

 

[filipenko32]

My gp wouldn't prescribe them either x

 

[lexi374]

Hi Lexi


I saw Prof Quenby last Oct for the NK test, mine came back at 10.2%. Do you mind me asking what your result was?

Im just waiting on BFP now so i can get started on this treatment. I saw my gp yest with the info from Quenby and she said she will prescribe progesterone but not steroids as she could be struck off! She is going to contact the Prof i think and discuss it with her.

OMG I cant believe you GP said that......im sure thats a over reation as its not really true if shes advised by a consultant. Mine didnt bat an eye lid!! She will if shes advised by prof that its ok surely.

My NK came back at 6%........not too high at first glance BUT i was ALREADY on steroids and had been for 2 months at the time!!!!!!! so without steroids she though it would have been up around 15% or so!!!!


good luck for the BFP!!!!

Wow 15%!?!

She said they are banned during pregnancy and she cant just prescribe them just because some1 tell her too! She also said there hasnt been enough published studies on NK cells etc. Shes a bit old school. I will see if she gets back to me, or i will have to go and get the prescription from Quenby when i need it.

 

[filipenko32]

Beach it helped me to put them in just before I went to sleep