The steroid junkies' perfectly unscientific medical trial

[petitpas]

Bumpy, I'm sure that if you email her back asking how many days past ovulation she would expect to see you (so you know how much notice you have to make travel arrangements) that she can give you more details. In any case, I don't suppose you will be able to confirm ovulation until a couple of days after with temps or does she want you to contact her once you get a positive opk?

GB, I read some research supporting aspirin alone and for one of my friends on here, Rabbitchild, that was the answer. She now has a little girl As far as I know, adding heparin is most useful if you have antiphospholipid syndrome and in clot prevention if you have a thrombophilia, especially if you carry two genes.

Do you mind me asking whether your last loss was also tested? Was that the first pregnancy on aspirin?
I always try to bear in mind that even if we get the treatment spot on there is always a chance that a pregnancy just isn't viable. With an estimated 1 in 4 (or 5 depending on which statistics you believe) we are bound to have the odd one that was never destined to be

After so many losses I don't blame you for covering your bases, though. I, too, moved from St Mary's to Mr S after exhausting all their tools (except exploratory surgery). I think they did a good job in general but unfortunately I needed that something extra that they couldn't give me. Hopefully, once Prof Q's trial with steroids is complete (and proves the treatment works fxfxfxfx) St Mary's will have the go-ahead to add the treatment to their toolbox.

Since you are travelling so far, I hope you can keep the visits to London to a minimum? I went privately and it took two visits to get my prescription. At the first appointment we went through my history and all the tests I already had. Mr S suggested what new tests to have (e.g. immune tests and for me also thyroid function) and I gave blood right away. Two weeks later we went back, were given my diagnosis and a prescription for steroids.
I was lucky because my GP was happy to continue prescribing the steroids to me based on Mr S's instructions (so I got them for free ).
Unless you need the intralipids I suppose you might be able to have your scans locally at your early pregnancy unit? Is this something St Mary's already set up for you?

 

[hopeful23456]

Gb- I had a large septum removed too, had 2 mc before and 2 mc after removal. So glad it's out!

 

[Bumpblues82]

Well my hubby's mum has offered to drive me down at short notice and I think just a positive ovulation test is all she needs I'm gonna use the fertility monitor and but tests for the days it says I'm likely to ovulate x

 

[Hope39]

Bumpy - once you have ovulated and email prof Q, she will email u back with a date 7-10 days later so you will have plenty time to arrange transport

Good luck x

 

[gbnf]

mee too thank god its gone feels like another hudrdle over xxx

 

[gbnf]

Firstly just wanted to send a heartfelt thanks for reading my post and taking an interest

Petitas, this is my first missed m/c since having my septum removed in nov 2011 ( hopeful so pleased it has gone to) in which i tried 150mg aspirin from bfp. betas were not rising properley so maybe this one was just destined to fail from the beginning also during scan the tech said endo looked thinner than she would have thought it should at 11mm. Never had probs with betas in previous.

Previous history: some of my previous lossess ( many d n c's and 2 m/management one didnt work retained tissue so d n c any way) i have tried 75mg aspirin with one i tried cyclogest, aspirin and heparin and still lost lil one at 6.5 wks after h.beat seen 5 of my lossess have been to cytogenetics and have all been karaotype normal and have been boys and girls so dont think chromosones or sex is the problem. I have always been a week behind in all my scans after reading so much wonder if this could be due to a lp defect what are your thoughts? also periods were all over till i had my last d n c about 1 year ago and seem to have regulated to 28 days since then still measured behind on this scan, b.friend nothing wrong with him as he has a girl from previous reationship, also this is my 3rd loss with him others were with my divorced husband uggh lol

My last loss will not be going to cytogenetics due to the horrendous time i had with the medical management and the way i was treat at the local hopsital sent home to pass after being in hospital 2 days said i was to high risk for d nc due to previous surgery and consultant told me genetics did not matter as it wasnt a baby :devil i told her it was my baby regardless to what they medically class it as i was furious im a h.care professional my self and wouldnt treat an animal like i was treated, thats that about that though because the thread will end up like my dissertation for uni lol as i am still angry abouth the way i was treat and spoke too!( not my usual hospital as sue in epac there is amazing and has looked after me perfectly with them all so early scans will not be a problem in the future also consultant will prescribed anything anyone suggests so thats good.

I went to st marys 6 times and once seen r rai who said i needed the whole works including steroids but at the last appointment i seen prof regan who dismissed it and said rubbish just a slightly raised teg so aspirin only and nothing wrong with antiphoslipids so need for clexane she was very matter afact about me and said the septum was the prob and me blood and to go away and get pregnant so thats what i did and here i am again maybe if i had gone with r.rai protocol this may not be the case feeling a little fustrated at the min.

My appointment is the 21st may to see mr s and it is about a 600 mile round trip so i hope i dont have to go to many times but saying that i would go to the moon and back at the min if thats what it takes.

sorry this post is huge but as you can imagine i have a long history

Is it possible to be immune issues even though the lil ones are implanting and getting to the same stage each time or more like a clotting prob?

There is a family history on my dads side of the family for thrombosis and strokes, dvts, raynauds etc no history of m/c my sister has 4 children no probs i love them to bits but feels unfair at times when i only want 1 she however had to have her thyroid removed after having my niece it became overactive while she was pregnant. i know im deffo not under active as i am only a size 6 and way to much energy and tsh has been normal when tested previously many blood tests done.

Thanks again for taking the time to read this you ladies have given me some hope and give me the strength to go on best wishes to everyone xxxx

 

[petitpas]

Hi Gb, just seen your PM and have hurried over here...

It really sounds like you have been around the mill

You know, I have a clotting issue, Factor V Leiden and a history of DVT and pulmonary emboli. Everyone kept telling me that clotting was my problem but I was on heparin and aspirin for several of my losses, including the last which tested normally (measured on target and alive until sudden death at 8.5 weeks). It is entirely possible that you have a clotting AND an immune problem.

To be honest, your last loss might have been chromosomal and aspirin is the answer but at this point and with so many ops under your belt I would think that you should go ahead, see Mr S, have your nk cells tested and then push for everything: progesterone, aspirin, heparin, steroids, vitamin D, extra folic acid, the lot.
The other route you have open to you is to try for a hysteroscopy to see whether the D&Cs have caused any problems although if I understand it correctly you have only had one (or none?) since the septum removal so that would probably be unnecessary.

The 11th of May is not far off so stay strong and get ready for your trip! Do you have anything else planned while you are in London? Something nice to look forward to?

 

[gbnf]

hi petitas

thanks for the reply

I dont think a hysteroscopy would be beneficial as i had 1 in november when septum removed and my discharge letter said cavity much improved

thanks to the hospital i will never know if my last loss was normal

i have been to my own g.p who has reffered me to mr s as a nhs patient and has booked a 2nd appt at epsom and st heliers for june i was very suprised as there was appointments for the 11th may which is sooner than my private one so im gonna take that appt letter with me and hopefully will be able to have me bloods done as a nhs patient which will save me lots of pennies if not im more than happy to pay i would give me last penny for a take home baby

no plans for london just booked hotel today going to travel on the sunday and stay over appointment on the monday and then drive it makes the travelling a little easier

keep in touch and i will let you know my results asap when i get them

xxxx

 

[petitpas]

Gb, I'm keeping my fingers crossed that Mr S can work his miracle touch with you as he did with me

 

[Bumpblues82]

Have any of u had children before your losses and what gestations have u all lost? Sorry I'm just hoping that some one has a similar story to mine and has had sucsess since I'm desperately clutching at straws :/ x

 

[petitpas]

Hi bump, since problems with the immune system are acquired and not hereditary it is perfectly possible to have children first and then encounter issues. Equally, some hereditary issues become worse with age so the fact that you have had one child successfully does not mean you don't have a problem that needs treating. In fact, with five losses under your belt (even if they were before and after your child) you most probably do have something wrong with you.
Do you mind me asking whether you have had any testing yet?

In answer to your question, I personally have no children yet and my losses all occured in first tri from 6.5-11.5 weeks although the critical week I couldn't get past seems to be week 8.

 

[Bumpblues82]

I need to update my profile lol I've had 6 losses in 3 yeards and all between 5 and 14 weeks I have one son who is 3 almost 4 and had no problems with him at all I'm currently waiting to ov so I can get an app with prof q in Coventry and I have had every test they offer on the nhs in my area x after the test wit
H prog q I have a list of tests that can be done and I'm gonna ask my specialist to tick off the ones I have had and if there's any remaining get them done too x

 

[lexi374]

Hi bump i dont have any children yet, none of my losses have developed past 6ish weeks, although they went further because they were 'missed.' We saw heartbeat once but it was already a week behind dates.

Afm saw prof q this evening, she gave me another prescription and did a quick tv scan im 5 and a bit/half weeks, sac is in the right place with a yolk and she said placenta was developing nicely. She seemed pleased with what she saw although we have still a long way to go. Im seeing her again in 2 weeks x

 

[Bumpblues82]

If I get diagnosed with this will I have to travel to see her all the time or wil my local hosp do the tests and prescriptions?

 

[Bumpblues82]

By tests I meant scans lol x and one more other thing I wanted to ask if I started the steroids how long can I be on them before conceiving is there a time limit to taking them? Like if I took em for so many months before??

 

[lexi374]

Im seeing her for the time being and getting prescriptions from her as my gp was being a total pain the a hole!! You may have more luck with yours though!!

I didnt start steroids until i got bfp and then will wean off from 10 weeks so will be off them by 12 weeks.

 

[petitpas]

Aw, lexi, that's lovely news

I am keeping everything crossed for your precious little cargo fxfxfxfx

Bumpy, my GP was happy to prescribe me steroids as per my (private) specialist's instructions. As lexi said, it depends on the GP.

 

[filipenko32]

Pip, random question!! when did you get sore boobs with this pregnancy? I can't remember whether you said the steroids affected that or not. Today I am on a new obsession: Why haven't I got boob pain at 8dpo? xx

Edit: Lexi, you've made my day!! Fantastic news sounds like everything is progressing well, will keep everything crossed for you, will be stalking! Are you going to set up a journal?

Edit again: lexi did your boobs start hurting early on?

 

[lexi374]

Pip, random question!! when did you get sore boobs with this pregnancy? I can't remember whether you said the steroids affected that or not. Today I am on a new obsession: Why haven't I got boob pain at 8dpo? xx

Edit: Lexi, you've made my day!! Fantastic news sounds like everything is progressing well, will keep everything crossed for you, will be stalking! Are you going to set up a journal?

Edit again: lexi did your boobs start hurting early on?

Ha lol im stressing about that as we speak!

My boobs didnt hurt at all when i got bfp and i was freaking out, i didnt feel anything until a week after i got a bfp and then they only feel a little tender on the outsides and only if i poke them!! (which i do alot)
It seems to come and go alot as well and at the moment they dont feel tender at all so im stressing aout that, i also feel a little crmpy since yest and im stressing about that too, it just never stops does it?!?

The only symptoms ive really got is serious constipation, never been this bad before, and huger and insomnia but they could be steroid related too.

Not sure bout a journal keep thinking bout it....

Good luck hope this is your month! xx

 

[lexi374]

Thanks pip1 xx