Autoimmune issues but no autoimmune protocol for FET

[MML]

Hi all,

I've got myself in a bit of a state. Quick backstory - tomorrrow I have my first FET. We have 4 PGT-a tested embryos, so all should be well. I have been TTC for over 2.5 years - one pregnancy, miscarried at 7 weeks last February. I'm 36, have polycystic ovaries and my partner has male factor issues, hence the IVF (well, ICSI).

But my clinic have refused to put me on an autoimmune protocol despite me having a few AI issues - I have psoriasis, psoriatic arthritis and thyroid antibodies.

I am on a medicated FET cycle of estrogen and progesterone - they have refused to give me steroids or anything else to manage autoimmune issues as it's my first go. But after doing extensive (maybe too much??) research in recent months, it seems like I may need extra help to make this work for me.

Am I going mad for thinking this is surely going to fail? I have seen and heard of countless women with AI issues who ended up with implantation issues, early MC, NK cells and/or other problems that could only be rectified with an immune protocol.

Or is there actually a chance this could work for me without all of that?

I really want to feel hopeful going into tomorrow but it feels like a lost cause right now. I'd love to know - has anyone out there had a successful transfer/outcome despite having autoimmune issues without an immune protocol?

Thank you 🙏

@MML first of all I would go in absolutely positive for tomorrow (I know it’s hard). I have thyroid antibodies and I am also doing a medicated FET this month. I will be on steroids for a some weeks. There is no definitive evidence that it helps, but I agreed to it as we only have 2 euploid embryos and just want to give myself best chance.

If your clinic has advised against it maybe you don’t need it? I always think there must be millions of women who have autoimmune issues who get pregnant ok all the time. We just put everything under microscope in IVF which may or may not be helpful.

Thanks @Faith2024 - it is hard but I will try to be positive. I feel like I know too much about all the ways IVF can fail, especially with autoimmune issues - I wish I was blindly ignorant, ha!

But you are so right - people fall pregnant all the time with AI issues, and many worse things. I will try to balance my thoughts with some posi vibes.

I really hope all goes well with your FET! 🤞🏼

@Faith2024 hi can I ask what steroid you were put on..was it just prednisolone or hydroxychloroquine too? What was the dose and protocol and did you have any side effects. I'm terrified to take them as the side effects are scaring me more and more

Hi @Sherr33 ! I actually had no protocol at all - nothing for my autoimmune issues. And I am now 16 weeks pregnant! So hopefully I am proof that AI issues don't mean you need extra help. Well, that was the case for me anyway!

My clinic refused to put me on anything as they said it wasn't worth the risks of side effects this time, and I am so glad they did.

I do already take hydroxychloroquine for my arthritis though, so no idea if that would have helped.

@MML thank you for replying and congratulations 🎊 can I ask what strength hydroxychloroquine you take for your arthritis and whatever you had significant side effects when you first started? Hope you are feeling well :-)

@Sherr33 I'm on a 300mg dose (it was 400mg when I started years ago) and nope, not a single side effect! I have to wean off them soon as you can only take them for a certain amount of time but I have had no issues on them. I also have taken prednisolone for my arthritis a few times - I gained a tiny bit of weight but otherwise nothing else happened really!

@MML my fear of side effects our weighs anything. But it's good to hear you didn't get anything major. Yh I've heard weight gain can be a something that happens with prednisolone

Hi @Sherr33 . Hope you are well? I was on 15 mg of prednisolone for 10 weeks when I started to wean off and by week 12 I stopped completely. I did push back and ask my consultant why it was useful for ME. I felt satisfied. I also asked my sister who is a doctor and she said it was a low dose
for short period. I think the risk to babies is very low I was more worried about how it would impact me. Also, prednisolone is routinely used in fertility treatments so I wasn’t too worried about it. However, if there is no plausible reason given why YOU shoukd take it then I would not. It’s something you have to decide for yourself given the information by your doctor and your own research.

I found the other meds tough to be honest but I am grateful our first FET worked and we are now 14.5 weeks along.

@Faith2024 awww congratulations.

At what stage did you start the Prednisolone? I know the start of dose increases after transfer for some or were you on this consistent dosage/strength throughout that time? Can I ask whether you experienced any side effects when you first initially started the tablets or were you okay throughout? My last FET I hated the blood thinners I felt rotten after that transfer and even worse due to it being a failed 😔 I read about a clinic advising to take both prednisolone and hydroxychloroquine which is why I'm gathering as much information about it. Were you on both?

Hi @Sherr33 , I was only on Prednisolone, started a week before transfer at 15mg. I found blood thinners painful but no other side effects. It was the estrogen and Prednisolone that irritated my stomach lining, but this was week 8 and I didnt have long to go at that point.

@Faith2024 thank you. Did they give you the gastro resistance ones I'm sure for prednisolone you can get them so they don't cause issues.

@Faith2024 @MML in terms of post transfer which vitamins did you continue with and how active/inactive were you. Sorry for bombarding with question

@Sherr33 I carried on with everything I was already taking - so along with my estrogen and progesterone, I was taking my prenatals (from Wild Nutrition), folic acid (I am on a higher prescribed dose of 5mg), omega 3, NAC and magnesium.

I stopped going to the gym but made sure I was walking as much as poss, aiming for 8k-10k steps per day. And avoided heavy lifting in the first couple of weeks after transfer (but I did carry some too-heavy shopping bags once or twice and was fine!) Hope that helps

@MML did you do your walks on embryo transfer day too and the day after?x

@Sherr33 I couldn't remember so I just checked my fitness app and yes, it seems I did! 10k on both days (but most of the walking on transfer day was before the procedure, however definitely 10k the day after and over 8k the day after that!)

@MML thank you so much. I'm going to continue my vitamins this time and get my steps in too x this Friday il know more about what our next steps are and possible start dates (I hope)

@Sherr33 my consultant told me to take it easy on day of transfer and few days after. Walking was fine second day and I did at least 1 hour walks most days after transfer.

Continued to take prenatals as usual.

@Sherr33 just take care of yourself and have a good mindset. I think it’s really out of our control. Try your best and let go.