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Miscarriage/pregnancy loss

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Prednisolone after 4 miscarriages

116 replies

JLB234 · 31/03/2023 05:14

Hi all,

We’ve had a couple of years from hell with 4 miscarriages in 20 months. We’d all but lost hope but then we had a consultation with Dr Thum at The Lister yesterday. He’s identified a borderline issue with my husband’s sperm DNA fragmentation and then he’s said that my NK cells are fine normally but become hyper reactive when I get pregnant.

We’ve already been referred for NHS IVF due to low progesterone levels but he’s advised that we go on 25mg of prednisolone from day 10 of egg stimulation until 12 weeks. I am obviously very excited that this might be a way forward for us but also quite apprehensive about side effects and if it will even work after all of the disappointment that we’ve had. Does anybody have any positive stories of using prednisolone after recurrent miscarriage? Also, what were the side effects like for you?

Thanks,

Jenny

OP posts:
Spin101 · 23/06/2023 17:50

@JLB234 @Ems123456789 how are you getting on? I’ve been trying to find more information on Dr Thum after seeing your posts. I had only heard of Gorgy and Shehata until then. Do you mind me asking how much a consultation is with him and approx how much the immune tests cost?

Ems123456789 · 23/06/2023 19:06

@Spin101 i think it was about £200 for a consultation and the testing was about £700.
I have recently started my cycle with a frozen transfer at my existing clinic next week but I’m going to the Lister for the Intralipids because they give a higher dose than my clinic.
My tests actually showed that IVIG would be 8% more effective for me but it’s £2000 per bag and you have to have 1 before, 1 after a positive test and another during the first trimester so £6k!!! My embryo is a good grade but it’s not genetically tested so it felt a bit mad to spend £6k on just one drug alone.

Spin101 · 23/06/2023 21:46

@Ems123456789 thank you! Did your tests include NK cells and cytokines? £6k!! 😮 gosh! Best of luck with your transfer!!! I’m on a medicated cycle atm. I struggle with thin lining issues so if this doesn’t work, I plan to do immune testing

Loz2467 · 04/09/2023 20:57

Can I ask how everyone got on?

Did anyone use Predisolone empirically as in haven’t had NK cell testing but has implantation failure?

Im going into my third transfer and I have had secondary inferitlity since a loss at 19 weeks in 2021 and no pregnancy since and 2 failed transfers. The loss caused me to have adenomyosis :(

ive been on 10mg of pred since cycle day 7 and my clinic said increase to 20mg on transfer day however a different Greek Dr down in London who knows more about adeno said increase to 20mg 5 days before transfer when I start progesteone support.

Just feel a bit lost and what to do and I don’t want to over do the pred and cause more harm than good.

Butterflybluey · 05/09/2023 07:52

Hi I was not tested for NK cells but have some autoimmune. I started on 10mg and only on transfer day I went to 20mg and have a BFP, I hope that puts your mind at ease, good luck x

Loz2467 · 05/09/2023 14:26

@Butterflybluey congrats on your BFP! I upped to 20mg this morning but already worrying if I shouldn’t have done. But then if it fails I won’t know either way what the cause of it is if that makes sense. Argh. So stressful. X

Ems123456789 · 05/09/2023 17:23

I’ve just have a third failed ivf with another loss unfortunately. I was on 25mg prednisolone and intralipid infusions with a top grade embryo. Had a heartbeat at 7.5 weeks but then it stopped developing. Starting to think my embryos may have chromosome issues. Have been referred to the recurrent miscarriage clinic and I think I’m future I’d consider PGT testing of embryos to try and increase my chances. Wishing everyone best of luck with any current or ongoing treatment.

JLB234 · 05/09/2023 17:55

@Ems123456789 I’m so sorry that you’re experiencing another loss. It’s so rubbish. Have you had any karotyping done? It might shed light on if there’s an inherited genetic issue with your embryos and therefore whether PGT is likely help. Sending you lots of good thoughts. Look after yourself ♥️

OP posts:
Butterflybluey · 05/09/2023 18:14

Thank you @Loz2467 i know it’s really difficult but sometimes you have to trust your gut as well, right now my consultant wants me to start reducing my 20mg and I’m in week 7. I am refusing to do this until I get to week 12 based on my own gut instinct. I have asked to have a call with him to debate this and I await confirmation. Also to add there is also a part of this process that is so out of our control no matter what we do/or not do and it’s important to remember that as we obsess over things massively and understandably so as this journey is challenging. I wish you lots of baby dust xxx

boymama82 · 05/09/2023 22:30

Yes me! I had 4 losses then success with pred and daily injections I did myself into my tummy. Good luck!!

Loz2467 · 06/09/2023 11:31

@Ems123456789 I’m so sorry for your loss. It really heartbreaking. I’ve never been pregnant again since loosing our baby girl back in 2021. I’m at a loss what else to do. I’m on down regulation for adenonyosis which was caused by the loss. I’ve had a lap but no endo found. Have you had all investigations?

@Butterflybluey i completely understand you worrying about weaning off them - I hope they let you continue if that gives you the peace of mind too. That’s so true - thank you for those words. I’m thinking should I of gone to Greece or Cyprus because they seem to be more experted towards adenomyosis. It just becomes your life doesn’t it and I spend way too much time on google! It’s been so hard to get what I want out of my consultant too :( and such a huge expense.

@boymama82 congrats that’s wonderful!

is there anyone who had implantation failure rather than losses?

Mine is complete implantation failure.

xxx

Benielros · 26/12/2023 06:57

Yes, i had one missed miscarriage and then quite a few failed transfers, and was put on 25mg of prednisolone…. it worked! no idea if it was the steroids or not, but am using it again with my second…

RePrry · 15/02/2024 21:36

Hi I’m just jumping in.
I’ve had 4 miscarriages in 18 months.
2 at 6 weeks, one at 8 weeks and one at 11weeks 5 days.
ive been seen at Lister and Hertford.
Ive just seen the specialist called Dr Atalla.
Hes stated that all my blood work and ultrasound are all normal and clear.
Hes said I could try and get pregnant again and be under his specialist care having scans every 2 weeks. He said that I could try again with no meds, with Prednislone, with Clexane or both.
I don’t know why I have a choice of one or the other or both.
On the second miscarriage I took baby aspirin, he said not to do this.
Ive asked about progesterone, but he said I didn’t need this.
Im so confused about going forward.
Has anyone heard of taking both together? Or been under Dr Atallas care?
I see him again in a month to discuss what we would like to do, he said to do some research by the next appointment.
hope I can have some clarity and make the right decisions.
xx

SuburbanMummy123 · 16/02/2024 10:14

That’s frustrating, you’re seeing the expert for a reason you want his advice!! He probably can’t answer “what should I do” but if you ask it as “what would you want your wife/daughter to do in my shoes” he should be able to answer. My husband is a doctor and that’s how we handled the decisions. Sounds like your doctor is taking the ‘patient-led’ approach very literally. Good luck xxx

Butterflybluey · 16/02/2024 15:48

@RePrry can you change clinic that was my first thought! I took Clexane, predinisole and progesterone all together, though I did ICSI and I got my BFP.

nearly8 · 17/02/2024 14:48

Sorry for all your losses ladies. Sending you all hugs 💐💐

No experience with these drugs but didn't want to read and run. From what I've read on other threads it does seem that pred can interfere with pregnancy symptoms. There's a very informative thread called Dr shehata advice a bit further down where there's lots of discussion around different drug protocols etc. I've just had my third miscarriage in under a year so am interested to know the options but private care is just way out of my financial league unfortunately

Ttcpph · 16/08/2024 15:08

Hi all, I know this thread is quite old now, but after people's experiences.
im on pred, clexane, progesterone and finally got my bfp after mmc in October 2022 and infertility / failed implantation since then.
I have been manicly testing as I feel soooooo anxious and constant pit in my stomach feeling. I have zero pregnancy symptoms. My boobs felt sore at maybe 4+3-4, but now I'm 5+1 with no sore boobs 😖 I have a test booked for 11 days away but that feels so far away.

did anyone else have no pregnancy symptoms on pred?
im worried I've lost it and won't know with taking the progesterone

Prednisolone after 4 miscarriages
Carportforme · 16/08/2024 23:52

Ttcpph Cingratulatiins in your pregnancy. Just wanted to pop on and say that pred is known to mask pregnancy symptoms, so try not to worry. Goid luck

Ticktock40 · 17/08/2024 06:08

@Ttcpph
I felt exactly the same re early pregnancy symptoms. I always suffered horrendously with morning sickness with all my other pregnancies. The pred defo masked them! When I weaned off at 12 weeks they hit with a vengeance. Wishing you so much luck, it’s such a hard time.

A quick update from me incase anyone’s interested. After getting a positive test last year when taking Prednisolone, clexane and progesterone I got to bring my rainbow baby home in January this year. I truly believe the change in protocol is what helped me for sure. (I manage to persuade the recurrent miscarriage clinic to prescribe the pred after doing my own research). I was so scared to take the pred (especially after reading the list of side effects) but I was actually fine on them. After a late loss then a further 4 losses during IVF, I was definitely losing hope. She was our very last embryo after 2 rounds (and 7 previous embryo transfers).

Wishing anyone else on this journey the very best of luck, it’s the hardest thing I’ve ever had to do.

Ttcpph · 17/08/2024 06:11

@Carportforme thank you so much for taking the time to reply. You have given me some hope 💕

@Ticktock40 im so pleased you got your rainbow 🌈 thank you for taking the time to reply, it has given me a little hope. Going to really try and stay positive before my early scan in a week and a half xx

Applecrumble11 · 17/08/2024 06:56

Hi @Ttcpph best of luck with your pregnancy. I was on 25 mg of prednisolone when pregnant a couple of years ago (for high nk cells) and my symptoms were definitely masked, especially the nausea. I can compare as I'm currently 11 weeks pregnant but not on steroids this time and my symptoms have been way worse (I'm sure a lively toddler doesn't help)!

@Ticktock40 I'm so pleased the treatment worked out for you. Progesterone, prednisolone and intralipids worked for me after 3 losses. I'm very grateful.

Hopeandfaith1990 · 17/08/2024 12:30

Ttcpph · 16/08/2024 15:08

Hi all, I know this thread is quite old now, but after people's experiences.
im on pred, clexane, progesterone and finally got my bfp after mmc in October 2022 and infertility / failed implantation since then.
I have been manicly testing as I feel soooooo anxious and constant pit in my stomach feeling. I have zero pregnancy symptoms. My boobs felt sore at maybe 4+3-4, but now I'm 5+1 with no sore boobs 😖 I have a test booked for 11 days away but that feels so far away.

did anyone else have no pregnancy symptoms on pred?
im worried I've lost it and won't know with taking the progesterone

Hi :) I’m in a similar situation to you and happy to see this thread active again. I am on Pred (25mg) Omezaprole and Cyclogest (400mg x2 at nighttime)

I’ve had 4 previous losses and am 4w5d today. Also was worrying about no symptoms (compared with previous preg) but it seems the Pred does mask them.

I’ve been so anxious but really going to try and stay neutral / positive. Glad to speak to someone in the same boat at the same time and this thread is really helpful 🙏🏻

Carportforme · 17/08/2024 21:19

Ladies, can I just ask you if you were put on the pred before or after a positive test and did any of you have it prescribed by the NHS. I only ask because I have read so much about it. I believe, for a multitude of reasons that my losses are caused by an immune issue and I am very worried that if and when I get my referral to the NHS they wont want to consider immune issues or prescribe pred if they do derm its needed, I have got the general impression that apart from antiphosphilipid syndrome, and one or two other issues, that you have to go private for immune testing and I dont have the money for it to be honest, so I am a bit concerned,
Currently I am on low dose aspirin awaiting conception. My focus said to keep taking it, in case it helps.

Hopeandfaith1990 · 18/08/2024 08:07

Carportforme · 17/08/2024 21:19

Ladies, can I just ask you if you were put on the pred before or after a positive test and did any of you have it prescribed by the NHS. I only ask because I have read so much about it. I believe, for a multitude of reasons that my losses are caused by an immune issue and I am very worried that if and when I get my referral to the NHS they wont want to consider immune issues or prescribe pred if they do derm its needed, I have got the general impression that apart from antiphosphilipid syndrome, and one or two other issues, that you have to go private for immune testing and I dont have the money for it to be honest, so I am a bit concerned,
Currently I am on low dose aspirin awaiting conception. My focus said to keep taking it, in case it helps.

Hello!

I am on Pred, Cyclogest, Omezaprole and 75mg Aspirin twice a day from 3DPO. I take until 11DPO, continue with the above if I get a positive test and stop if negative.

I had my natural killer cells tested on the NHS after 1 ectopic and 3 MC. They came back high and then the recurrent MC unit put me on the protocol above. I was surprised to get it on the NHS but obviously grateful as it was my next step to test privately. Hope that helps

Carportforme · 18/08/2024 16:41

Hopeandfaith1990 · 18/08/2024 08:07

Hello!

I am on Pred, Cyclogest, Omezaprole and 75mg Aspirin twice a day from 3DPO. I take until 11DPO, continue with the above if I get a positive test and stop if negative.

I had my natural killer cells tested on the NHS after 1 ectopic and 3 MC. They came back high and then the recurrent MC unit put me on the protocol above. I was surprised to get it on the NHS but obviously grateful as it was my next step to test privately. Hope that helps

Thank you so much for this. Makes me feel able to move forwards with more confidence. I will keep going with the aspirin and see whether it makes a difference if I fall pregnant again before my likely referral appointment but you have made me a lot more hopeful so thank you x