The steroid junkies' perfectly unscientific medical trial

[petitpas]

Filipenko, I believe that in theory you are supposed to fall pregnant more easily whilst on the prednisolone as your body will be more welcoming to babies. That's why they sometimes use it in IVF to treat women who have suffered a number of failed cycles.

I had a bfn my first cycle (we didn't put much effort into that one tbh) and then went on to get a bfp the next.

There are a number of factors that can affect your cycle: Taking aspirin daily can delay ovulation, taking progesterone can delay af, taking prednisolone can affect ovulation.
Personally, I didn't notice much of a difference with any of the drugs. Maybe a slightly longer lp with the progesterone but mine was short anyway so

I would try not to worry about it but be open to things being slightly off so if you always ovulate on day 14 maybe double check with opks and temping. If you're not sure, keep on dtd.
The good news is that though annoying these changes in your cycle shouldn't affect your ability to fall pregnant. The only bad case is if you don't ovulate at all but I think at this point we know our bodies well enough that we would notice. Plus, I can't think of anyone where that has happened.

 

[filipenko32]

Thanks so much pip, good of you to reply. I temp and opk like a madwoman so i know i definitely ov'd this cycle. What you said makes sense and it obviously hasn't affected lots of ladies including you so maybe it was a silly question. I am just so eager to get a bfp as so many things are different this time having had a d&c for one of them. I was reading through the treamtent plan before, are you scared of coming off the drugs? I would be if I ever get that far but I'm sure he must know what he's doing! Dr S is just deciding whether to put me on heparin as all my blood clotting results show no pattern whatsoever and there's a protein s result which decides to be abnormal now and again. I really want the injections too just to cover all bases but might have to accept doctor's orders on that one. Did your steroid side effects die down after a while? I haven't really noticed anything yet on 25mg for 3 days.

 

[RGN]

Hi Ladies -

I've only just found this thread and haven't yet read through the whole thing but was hoping you could answer a question (apologies in advance if this has been asked/answered before)...

Have all of you ladies tested positive for immune issues/NK cells, etc.? Or do you take steriods just a precautionary measure?

Apparently I don't have any immune issues but am wondering if I should press for steriods anyway? I want to do anything/everything I can to reduce the chance of miscarriage. I'll already be taking asprin, lovenox, progesterone in oil, vitamin D, metformin, and mentax (folic acid).

 

[filipenko32]

Hi RGN :wave: I just found out my results yesterday from a blood test I had a few months ago. Mine were exceptionally high according to Dr S but I have to say that I was ready set go for trying steroids anyway. In fact my old ob-gyn put me on 10mg after ov on the off chance they may work, but Dr S put me on 25mg after ov. My old ob-gyn's reasoning was that the heartrate went up when he put me on 10 mg steroid at 6 weeks pregnant- NO idea why he did this as Dr S says this would not have made any difference and heartrates go up and down anyway. So i started to take the 25mg of steroid 2 days BEFORE i saw Dr S as I was willing to give anything a go. Luckily that was the right thing to do as my levels were high but I never knew that would be the case and so i was a bot naughty really. As it turns out I can just continue the treatment programme this cycle as i've been following it anyway. He told me off though and said they were serious drugs and not to be messed with, with no evidence to back it up. Would I have carried on taking the steroids with no results this cycle? Quite probably tbh. Kind of got to thinking that if I don't do something different i'm gonna get the same result... Just my opinion though obviously. what tests ahve you had done for immune issues? Is your FET transfer drawing near now!!? Hope that's helpful x x

 

[petitpas]

Filipenko, I totally felt the steroids when I started taking them! I was constantly hungry and I was buzzing by the afternoon. I ended up taking the pills late morning so the biggest buzz was at the end of my working day and I felt I was less likely to embarrass myself
When I stopped the pills after a bfn I had horrible headaches for three days.
My next cycle the buzzing ebbed off after a few days and things became easier much faster. I am still eating really often but I'm pretty sure that is a combination of ducky calling for food and me trying to ward off the sicky feeling.

You won't believe it but I am already weaning off the steroids: I am down to 15mg/day and my baby is still alive (used doppler this morning). I'm not too worried. Mr S has done this plenty of times - he knows what he's doing!

 

[petitpas]

RGN, I have a clotting issue, which we addressed with injections and aspirin. Then I still lost a healthy baby so I was tested for nkcells and that came back positive so I am on steroids.

Have you had all the other recurrent miscarriage tests? Did anything come up positive?

To be honest, I wouldn't suggest dabbling with steroids on your own. They are strong drugs and you need to be under medical supervision. What is your doctor saying?

 

[filipenko32]

RGN - I have found that Petitpas is always right so I would listen to her!

Pip - I am not really feeling much! In what way were you buzzing? Also I forgot to ask dr s what his success rates were, do you know?

 

[filipenko32]

That's just fantastic that you're coming off them already!! So happy for you!!!!!

 

[RGN]

Hi filipenko! Fancy seeing you here Thanks for sharing. Given your high NK cells I imagine steriods will make a significant difference for you! Sounds like you're on the right track.

I don't actually have details on all the auto immune tests that have been run. My RE walked through them with me in her office (tested normal on all of them) but for some reason I didn't take notes that day so can't remember what was tested. She assured me that she had run a comprehensive panel. And honestly I haven't done a whole lot of reasearch on immune issues so don't really know what questions to ask ... yet.

I did ask her about steriods once before, but she said given my issues (with the blood clotting disorders) that lovenox was all I needed but I'm going to raise it again and find out what, if any, downside there would be to adding steriods to the mix 'just in case.'

I am moving forward with my FET ... taking estrace 3x daily now. I have a scan on Monday to check my lining so will learn more then but they currently estimate my transfer will be around Dec. 14!

 

[RGN]

Petitpas - Thanks for your response. My NK cells are normal.

I definitely wouldn't take anything without my doctor's orders. Was just curious if other doctors were prescribing steriods as a preventative measure for recurrent miscarraige - even to those without immune problems, but seems the answer is no.

Thanks again for the input!

ETA - I've also had all the recurrent pregnancy loss panels done and that's when they found my blood clotting issues (MTHFR & PAI-1). I was on asprin and lovenox during my last pregnancy but miscarried anyway.

 

[filipenko32]

Petitpas - Thanks for your response. My NK cells are normal.

I definitely wouldn't take anything without my doctor's orders. Was just curious if other doctors were prescribing steriods as a preventative measure for recurrent miscarraige - even to those without immune problems, but seems the answer is no.

Thanks again for the input!

Good luck with the transfer RGN!! I will be keeping everything crossed for you! Definitely think it's worth double checking with your doctor about the steroids but sounds like you don't need them at all I really hope it all works out for you!

 

[hopeful23456]

Rgn- I technically don't have immune issues but am on steroids and lov as they can't find anything wrong per the tests. Some tests are close to being out of range but they technically are not.

 

[petitpas]

RGN, so you have been diagnosed with clotting issues? Was this before you had the miscarriages or recently?

Most women I have seen on here who were diagnosed with clotting issues seem to have been successful with heparin and aspirin or just aspirin on its own
So that's great news!

I can understand you wanting the steroids, too. It is so hard thinking there is something else you could be taking that might spare you the horror of another loss
Ultimately, only you and your doctor can decide on what is the best way forward for you.

Just one thing I would like to say about your story is... 57 eggs?! OUCHY! Well done you!!! I hope you are all recovered now!

 

[lexi374]

Sorry to read you had a bit of a runaround, Lexi. I take it your local recurrent miscarriage clinic ran all the standard (not nkcell) tests but didn't find anything?

I am sure you are aware that Prof Quenby is running a trial to prove the effectiveness of steroids and nkcell testing? Hopefully, that will put the testing and treatment into the hands of the NHS
My three months of steroid pills are certainly much cheaper than another D&C!

Yes i went to the J.R. Oxford which is not my local hospital but my gp said they would be better, we both had bloods taken 10 weeks ago and im still waiting for a letter with results!!! I do know they are all normal though as i emailed him a couple of weeks ago to find out, he said a letter would be sent out shortly!! So who knows when that will arrive, not that im expecting anything from it.

Will see what prof q says tom, really should write a few ?s down before i call her.

to all xx

 

[RGN]

RGN, so you have been diagnosed with clotting issues? Was this before you had the miscarriages or recently?

Most women I have seen on here who were diagnosed with clotting issues seem to have been successful with heparin and aspirin or just aspirin on its own
So that's great news!

I can understand you wanting the steroids, too. It is so hard thinking there is something else you could be taking that might spare you the horror of another loss
Ultimately, only you and your doctor can decide on what is the best way forward for you.

Just one thing I would like to say about your story is... 57 eggs?! OUCHY! Well done you!!! I hope you are all recovered now!

I was diagnosed with the clotting issues after my second loss. For my third pregnancy, I was on asprin and lovenox but still miscarried. I do think that third pregnancy had some chromosome issues as it had a VERY large yolk sac, my HCG levels were kind of funky, etc. so even though we did see a heartbeat, I think there were chromosome problems and I would have miscarried regardless of taking the blood thinners or not.

And yes, I had 57 eggs! I was soo sick after the retrieval I couldn't do a fresh transfer and we had to freeze all. I gained 17lbs (some free fluid in my abdomen but mostly due to super swollen ovaries). Took about a week but I am very happy to be back to normal. And now we have 10 chromosomally normal embryos on ice so I am hoping it will all be worthwhile!

 

[petitpas]

All the best at your appointment with Prof Q, Lexi!

RGN, I had two losses in the middle that I think were chromosomal, too, as they were off... Unfortunately, even though we have another factor there is still the bad luck element
10 eggs on ice is an excellent harvest, though. Sorry, is harvest a bad word for this? I don't mean it to be...
Will they be putting two back in when you go for the FET?

 

[RGN]

LOL - harvest is a pretty good description!

Yep, having two thawed (hopefuly both make it) and put back in the week of Dec. 12. So anxious to get the show on the road ... feel like this process has taken FOREVER!

 

[petitpas]

OMG, that's so soon! I suppose the good thing about it is you will know the result by Christmas. You either celebrate a bfp or distract yourself with plenty of good food and drink
Here's a bit of the good 'ol magic stuff

 

[filipenko32]

EDIT PLEASE IGNORE AND LOOK AT PAGE 35 ON THIS THREAD pip what do you think of this newly acquired piece of information we have from a consultant at an IVF clinic (we went anyway as it was booked and paid for and couldn't cancel). In a nutshell I got all the usual 'they don't really know about why if no diagnosis...steroids maybe...go for it' but alongside this he told us that there is a very rare thing called Ha1 mismatching where me and my hubby may never have a successful pregnancy because my body rejects my husband's genes. He said this was rare. He told us this when he doesn't fully understand it himself and asked us to talk about it with Prof Regan at the Rec Mis Clinic. He also said that boys are miscarried much more than girls. I am really interested to know what you think of all this...I think he's clutching at straws!

 

[filipenko32]

Pip I wonder if he's getting confused with 'surface markers' and CD56 cells - and steroids treat all this don't they??? He wasn't a recurrent mc specialist so...