The steroid junkies' perfectly unscientific medical trial

[leylak]

No, I will not be having monthly tests. I don't know when I will have test next. Last time I asked for this second test, my dr said no, it is too early for levels to fall but then changed his mind and ordered. The first two tests were 3 months apart so once a month is too frequent it seems. If I fall pg soon, maybe then I will get another test. Real success is getting pg rather than getting levels down.

BTW I have been stalking your journal and rooting for ducky

 

[filipenko32]

Thanks, keeping my fingers tightly crossed that you get to your 12 week scan!!

I actually ovulated 5 days after the bfn after my mc iykwim! We even tried then but no joy! I'm hoping this cycle is the one. Just out of interest, did you evr get an amh test done?

 

[petitpas]

Nope, I don't think so. Unless it is part of the day 3 or day 21 tests? Those came back normal for me.

 

[filipenko32]

Morning ladies, hope you're all well. Finding myself back on this thread again as we went to see another consultant and he referrred me to Professor Brosens who I think is part of the Quenby team that i have heard a lot of ladies talk about. Have you ever heard of this 'superfertility' theory where women who have rpl are superfertile because our womb's implant anything (for want of a better way of putting it!!) even chromo abnormal embies?
Well maybe we're not going ttt this cycle after all as I think I will be going for this biopsy in Warwick. My only question is what is the treatment if you're diagnosed?

 

[petitpas]

If you go on Prof Quenby's treatment programme, I think it is very similar to the one I am on except that you only start with the steroids when you have a bfp (I started at ovulation). She seems to have good success rates and is currently running a large trial

I have had the super fertility theory mentioned to me but I don't think it applies. I had my last baby tested and it came back genetically normal. I think that in my case I am just incredibly lucky to have fallen pregnant so quickly each time but was unlucky to have an immune system that killed the babies.
I did have two early losses (6&7 weeks), which I assume to have been genetically 'off' but that number is well within the normal rates. It's the other three losses I needed treatment for.

Oh, and the treatment seems to be working! I saw Mr S this morning who reckons we are out of the danger zone and can consider this a normal pregnancy...! I so hope he is right!

 

[filipenko32]

Petitpas I am sooooo pleased for you, I think about you every day and hope your LO keeps going!!!! I might need to know exactly what you did as I have just found out my last loss was a normal male fetus and the doctor thinks my other pregancies which followed similar patterns were normal too. I'm devastated and have just spent 2 hours crying but in a way glad that this now means I can concentrate on steroids / blood thinners etc. So what exactly did you do if you don't mind me asking?

 

[petitpas]

Ok, so I have a clotting problem anyway. I have Factor V Leiden but most importantly I suffered a dvt and pulmonary emboli even before falling pregnant. For the clotting I was put on low molecular weight heparin (lmwh) injections and baby aspirin. In previous pregnancies I was on one injection/day but my blood results were on the low side so they doubled my injections recently. I'm a bit extreme, though, and this doubling up certainly isn't standard treatment. If you come up with a clotting issue then it will be once/day for you (phew).

The steroids, vitamin D and Omega 3 supplements were all new this time round and part of Mr S's plan.

Here is the summary:
Fragmin - a brand of lmwh - 5,000iu 2x daily - from bfp
Prednisolone - a corticosteroid - 25mg 1x daily -from positive opk
Baby aspirin - 1x daily - throughout cycle
Folic acid - 5mg 1x daily - throughout cycle
Cyclogest progesterone suppositories - 400mg 1x daily - from about 2dpo
Vitamin D - 1,000iu 1x daily - throughout cycle
Pregnacare Plus Omega 3 (two different pills in one pack) - 1x daily - throughout cycle

I also stopped working which allowed me to destress and sleep during the day.

So, quite a list!
I also lost a 'healthy' boy before this pregnancy (with lmwh, aspirin, cyclogest, high folic acid) and I know how devastating it is to get the results through
At the same time you now have proof in your hands that something is still amiss. You are not hyperfertile in that your womb accepts any old egg. You lost a healthy baby and you have an issue that needs fixing. Whatever treatment you were on up until now was not enough but you have a plan and you are seeing the right people. You are being a great future mummy by seeking out that help and I am sure your little angels are proudly watching you

 

[filipenko32]

Thanks so much Petitpas that's really useful to know I am printing it out and putting it in my mc file (yes I have a very organised file FULL of test results etc, so sad), so sorry you had normal losses too, it's devastating isn't it? I am trying not to think of what they *would* have been. Think I am going to need some spiritual guidance of some sort. How do you cope with this?
I will discuss all those treatments with my doctor. I think that no stress is really important too. I think you have to do everything you can for your body when you're losing normal babies. Funnily enough I did have an appt booked with Mr S, they even still have my £50 deposit. I'm cancelling the appointment I had with the IVF/ PGD clinic as that would have obviously done me no good whatsoever! So I'm going to try to get an appt with Mr S next week, I have the Quenby clinic in Warwick probably in 3 weeks and the recurrent miscarriage clinic at St Mary's on the 6th December. Surely someone can help us!! I understand that mc's can be a mix of normal and abnormal but was it finding about the normal loss which made you think it was 'your body' or did you suspect already because of the factor V and blood clot? Thanks again

 

[filipenko32]

Petitpas sorry, would you mind telling me from when you started taking everything you outlined above like you know CD 1 or before ov (maybe just quickly edit what you wrote) I'm sure you've got better things to do but thanks so much!

 

[petitpas]

List updated!
I have a folder, too. It's broken due to overuse so I am going to have to get a new one soon

I really don't know how to help you with the spiritual side. It is so hard to deal with! I just cried a lot after each loss and then slowly picked myself up as I formulated a new plan for my next pregnancy. I truly believed that clotting was my problem after my second loss. With my first I wasn't put on the heparin until it was too late, with my second I flew to the States twice so we thought that might have aggravated my clotting. Then my third and fourth were early losses which was purely bad luck and I can tell you I was very angry and frustrated at that! I had all my hopes pinned on my fifth so when that one died it was a huge shock for me! Doctors were still telling me it might be bad luck but I got the test results that proved them wrong.
St Mary's decided to put me on the waiting list for a hysteroscopy but I wasn't convinced and wanted to avoid further surgeries (I've had six over the past two years). At that point my husband and I decided to give Mr S a try.

I see that you are planning three appointments coming up. Do you mind if I give you my opinion on it? I know you want to try everything but I fear that by seeing everyone at once you might be muddying the waters. Prof Q and Mr S use very similar treatments despite their tests being different (blood test vs biopsy) so I am not sure what the point would be in seeing both? St Mary's are very methodical and cover all the classical causes. They also use the TEG test which is not available elsewhere. You could see them first and go on to nkcells if nothing is found? Or combine with one of the immunologists?

Sorry, I am finding it difficult to put my thoughts into words today. What I am trying to say is maybe pick a specialist and trust them to help you. If they don't come up with a solution then move on.

Obviously, it is your decision and not an easy one to make there is so much at stake. But help is out there and the reason for your losses might be quite straightforward and easy to treat!

Big big and keep fighting!

 

[filipenko32]

Aww thanks petipas, yes you're so right, i think i'm going to end up very confused!! I will have a rethink when my head is clearer tomorrow. You are a very brave lady and you're going to be on forever more x x x I will keep fighting, I like the ninja, it made me laugh!

 

[petitpas]

 

[filipenko32]

 

[BFPSeeker]

Hi guys can I join you?

I am with Dr Shehata after 3 losses. Been on steroids for 2 cycles now - got a BFN today . I just can't stand the waiting I just want to be pregnant again to see if these steroids are going to work for me!!

 

[petitpas]

Hi bfpseeker and welcome to the club! So sorry you had to suffer three losses in the process

If it helps, I'm 11 weeks today (listened to heartbeat this morning) thanks to Mr S.

I really hope you get your Christmas bfp so you can try the treatment for yourself! In the meantime, I'm popping you on the front page...

 

[LeeC]

Hey BFP. I will be on the steroids again in December and also with Mr S. I'm hoping to get a cheeky little BFP for Xmas and like you will be keen to see if the steroids will work for me too this time.
It's inspiring to read the success stories though.
Good luck.
Pip, that little hb must have been like sweet music to your ears

 

[filipenko32]

Petitpas can I just ask, did you take the pregnacare vitamin tablet too or just the oil?

 

[BFPSeeker]

Thanks petit pas , congratulations on getting so far this time that's such good news . Thanks leec , I see you are in Glasgow , I'm in Edinburgh . It's a pain getting to London to see dr s isn't it . I've been up since 4.30 this morning to fly down as he wanted to see me after 2 cycles on the steroids . Hopefully it will all b worth it tho !

 

[LeeC]

Hi BFP. Yip, I'm the same had to leave at 5.30am to get to airport, it's a long day. Where are are you seeing him. At his clinic or at St Helier. Wish he would run a clinic up here in Scotland.

Filipenkpo, sorry to hi-jack your question to Pip. If it helps I am on the Pregnacare, additional folic acid, vitamin D and aspirin along with the oil. It's quite a combination x.

 

[petitpas]

Filipenko, exactly as Lee says! Pregnacare Plus comes with two different pills, which I both take. And all the other stuff...

I've just loaded a vid of the heartbeat into my journal. Well, I'm pretty sure it's ducky's heartbeat
I'm not having a scan this week so it is very reassuring to be able to listen in.

BFP, I hope your appointment today is useful. I'd be really annoyed if I flew all the way down just for a blood pressure check!

Do you have something nice planned for the rest of the day at least?