Recurrent Miscarriage Thread

[dairymomma]

It's been a while since I last posted here but I just wanted to pop in with a quick update. I was recently told that my uncle has two genetic markers for clotting disorders and one, while pretty rare, is known to cause miscarriage in women. He and his wife called my dad the same day of his dr appointment to let him know so my dad could pass on the information to me because they know my history. I've been tested for clotting disorders but only the most common ones so it's likely I've never been tested for this one. We're just waiting on some more info from my uncle (via my dad) though it may be a bit since my uncle is currently in treatment for heart rhythm issues and a pulmonary embolism (which led to his clotting disorder diagnosis). I'm on the fence about this news. If I have it, it would explain SO much-the unexplained bleeds in my first tri, why baby aspirin & progesterone seem to help me sustain a pregnancy better than just progesterone alone-and it's easily treated. I'd likely be on a baby aspirin every day and go on lovenox or heparin for any future pregnancies with a bit of extra monitoring. It'd be an answer with an easily treatable outcome. However, if I do have it, it means I'm also looking at extra monitoring for the rest of my life as I'd be at risk for clots and my kids would all need testing as well. It also makes me question whether or not I should have more kids because even with the blood thinners, it'd mean an even higher risk pregnancy and my odds of miscarriage are still increased. So there are many downsides to this being a possibility for me. Butr then there's the other answer-No. As in no, I don't have this disorder. Which means I'm back at Square 1 again... Unexplainable.

I'm trying not to think about this stuff as yet because I know so little but I'm anxious to find out more. I'm def not known for my patience...

 

[SweetV]

Dairy - I hope you find your answers

 

[blueblue]

Dairy - I hope you get some answers soon. It's ok to be impatient, you've been dealing with this for so long

 

[stuckinoki]

Hey ladies!

It's been quite some time since I've popped on to say hello. Currently at 15 losses, still no answers...but in this past year I started going to the gym, dropped a lot of weight, started taking BCP, stopped taking BCP and started focusing less on pregnancy and becoming pregnant. It's helped my mental well-being exponentially.

Wondering if the steroid regimen for nkc has changed at all, or if anyone else has had luck...I'm currently on 10mg 2x a day [thankfully it doesn't seem to keep me awake at night anymore.

I've been finding that when I'm on the steroids, my hcg seems to rise as it should but then drops off, which is better than without where it just hovers around 25mIU and then disappears...

Wondering if anyone else has had any luck?

 

[Tasha]

Stucki, it's nice to hear from you although wish it were better circumstances.

i will spoiler as I'm talking about a rainbow

.

Spoiler

I've had a success now. Orion was born three weeks ago tomorrow. I was on high dose clexane, aspirin x 2 a day, progesterone 400 mg x 2 a day, prednisone for the first 12 weeks at 25mg a day, anti malaria tablets, high dose folate, vit d, iron, prenatals. I know our situations are different as I had babies already but after 16 first tri loses and a stillbirth recurrently I honestly thought it wouldn't happen again.

Would your Dr consider a higher dose?

 

[stuckinoki]

I'm not currently with a doctor, he kind of just gave me the stuff I asked for and sent me on my way.

My prednisolone is 10mg tabs, would you suggest I kick up to 30mg?

I'm trying to take them 2x a day now wondering if the slower disbursement of them will make a difference.

Heck, I guess all of it is trial and error. Lol

 

[Tasha]

Yep, I know people who didn't have any luck at 20/25 and upped to 30 they got their rainbow.

You should take them all in one go in the morning, I was advised x

 

[dairymomma]

I was going to suggest you talk to Tasha on one of your other threads though it looks like she beat me to the punch here.

FX this is your sticky bean stuck.

 

[petitpas]

Hey, just popping in :wave: I got my two rainbows at 25mg/day taken in one go (along with progesterone, aspirin, a high dose of heparin, 5mg folic acid and omega 3 capsules). Please correct me if I'm wrong but I think the next step up is 40mg.
I also made sure to start the steroids as soon as I thought I was ovulating (as opposed to the progestetone, which starts at approx 3dpo when ovulation has been confirmed).
Good luck with everything!

 

[stuckinoki]

They won't do the heparin because I don't have any bleeding/clotting disorders.

I've bumped to 30 on the prednisolone and I'm doing oral progesterone. Hopefully that's enough to help.

I started the steroids in the 2ww just felt like it may be a good month so hopefully they had a couple of extra days to do their thing in my body. Lol

 

[ginny83]

Fingers crossed this is it stucki!

I was on 10mg of steroids everyday of my cycle and then it bumped up to 20mg from bfp. Baby aspirin, progesterone, estrogen clexane from BFP as well. I also had about 5 intralipid transfusions with the first one being at bfp. I got very lucky and had my rainbow on my first go with steroids (and this particular combo)

In the past I had still miscarried on progesterone, aspirin and clexane.

Dairy - it's so hard when you don't have a definite answer. The only thing I've been diagnosed with is high blood pressure and high NK cells. The Nk cells are a huge problem at the start of a pregnancy and the blood pressure at the end :S

 

[Keep_Smiling]

Hi everyone, I have been TTC for 12 months and after 3 early miscarriages and numerous menstrual problems I finally had an scans and tests last week my results came back today. I a 'large' focal adenomyoma at the back of my uterus. So far my ovaries and the rest of my uterus seems healthy but I'm struggling to be positive about it. I have had a look on the net but it all seems pretty negative and the only options seem pain killers, contraceptives and hysterectomy I'm only 26 and me and my partner have been so set on starting a family it's so disheartening, does anyone have any positive advice or been in a similar situation and managed to conceive?

 

[dairymomma]

I am sorry I am not much help with this but I just wanted to say I hope you find an answer. I would recommend you talk to your doctor before making any decisions though as they will be able to help you figure out the best course of action from here. FX they find a treatment that works for you that's not as drastic as surgery.

 

[stuckinoki]

Need some prednisolone advice from the ladies who have successfully used the protocol:

Spoiler

I'm just under 5 weeks, have been taking 30mg daily of the prednisolone. Seems to be working so far. At what point do I start weaning off of it? 12 weeks? Do I drop to 20mg and then 10mg or do I just stop taking it at 12 weeks.

Thank you.

 

[dairymomma]

I've never taken it (though considering it the next time I'm pg) but I know you need to wean off of it. Tasha would be a good one to ask about the schedule for it.

 

[Tasha]

Wean off it Stucki. I can't remember exactly what I did, I think it was 3 days of 20mg, 3 days of 10mg and two days of 5mg. I'll double check later xx

 

[hopeful23456]

keep smiling - I think hearttree that was on this thread awhile back had that, she had 4 m/c and then had her rainbow girl 3 years ago. so there is hope. maybe she'll have time to post on here

stucki - super happy for you

 

[heart tree]

Keep smiling, I'm the one who referred you to this thread from your post on the adenomyosis thread. I'm afraid when I was on this RMC thread I was the only one with adenomyosis. You may find the same. It's not very common and it can feel lonely. But as I mentioned on the other thread, it's very possible that your adenomyosis isn't the cause of your losses. Many women have babies without even knowing they have adeno until it is found during a c-section. I suggested you join this thread because you've had 3 losses. You should get recurrent mc testing. These ladies are a wealth of information about what tests you should be asking for. It could be a clotting disorder, thyroid issue or something else. I have every hope that you'll go on to have a baby.

Congrats to you Stucki! I have no experience with the steroids but I hope they finally do the trick!

I haven't read back much more but want you all to know I'm praying that each and every one of you get your much deserved rainbows. xo

 

[ginny83]

dont just stop the steroids stucki - you need to wean off them

I think I started at 12 weeks and weaned off 20mg over just over a week and half. A few days of taking 10, then 5 then every second day

Here is why off the net:

If you abruptly stop taking prednisone or taper off too quickly, you might experience prednisone withdrawal symptoms:

Severe fatigue
Weakness
Body aches
Joint pain

Prednisone is similar to cortisol, a hormone naturally made by your adrenal glands. If you take prednisone for more than a few weeks, your adrenal glands decrease cortisol production. A gradual reduction in prednisone dosage gives your adrenal glands time to resume their normal function.

The amount of time it takes to taper off prednisone depends on the disease being treated, the dose and duration of use, and other medical considerations. A full recovery can take anywhere from a week to several months. Contact your doctor if you experience prednisone withdrawal symptoms as you are tapering off the drug.

 

[hopeful23456]

stucki - I weaned off steroids (prednisone). 20 mg I think to start? then down to 15,10,5 maybe did a few days on each dosage? don't remember exactly. I was on it for around 12 weeks