Hydroxychloroquine before Stims!

[Nes1005]

Hello everyone

We are embarking on last own eggs cycle at the end of this month due to age.

I have recently( in the last month) been diagnosed with mild adenomyosis and sticky blood, I am gutted that these issues have only been picked up now as I am nearing the end of my journey…but here we are.

The hameotologist who has done my blood tests and diagnosed Antiphospholipid syndrome (sticky blood) has suggested Hydroxychloroquine via a trial in her nhs clinic. I don’t have time for the trial but my ivf clinic abroad has said they will prescribe it if I want them to, they don’t know that much about it but are supportive based on my Uk haematologist suggestion.

I was hoping to hear back from anyone who has taken it, did anyone take it before stims ( we have no frozen embryos)? Not sure if I should take it from now or after stimming but before transfer. Guessing it needs a bit longer than ‘just before transfer’ to work but also worried it might effect eggs.

I can’t see the haematologist again and ask her as it was private through my work healthcare and only 1 appointment and follow up were covered!

Grateful to hear anyone’s experiences or thoughts ? And has the Hydroxy helped, any positive outcomes?

Thanks so much and as ever so much love and best wishes to everyone here going through this tough, tough, journey.

Also, it’s a year ago today that I had my positive pregnancy test for the last baby I lost ( missed miscarriage), sending so much love and strength to all the mummies and daddies of angels.

❤️❤️❤️

[PRAYINGFORTHISTOWORK]

hi yes my daughters diagnosed with the same and took this (apparently you have to be careful taking it for too long due to an effect it can have on your eyes?) but she took this along with her immune protocol and it worked for her x

[Nes1005 in reply to PRAYINGFORTHISTOWORK]

Oh wow, I’m so glad it worked for your daughter, how amazing for you all.

Do you know if she was taking it before /during stimulation or after embryos were created. That’s the info I’m struggling to find.

Thanks for the tip about eyes, I’ve seen a bit on google about that which is a bit worrying but I’ll be sure to look out for that side effect.

Thanks so much for taking the time to reply, we really are nearing the end of the road so desperate for something to help make things work out this time.

Lots of best wishes to you and your daughter😊

[PRAYINGFORTHISTOWORK in reply to Nes1005]

She took it after collection but before trf and continued to take it throughout pregnancy, sending u all the best of luck and really hope it works for u x

[Nes1005 in reply to PRAYINGFORTHISTOWORK]

Thanks so much, I really appreciate you sharing.x

[Chel91]

Hi, yes I have APS as well. I took hydroxy for my successful FET. I don't think it would necessarily have an impact on eggs, but I'm not sure. Definitely you need to be on it for at least 3 months before transfer though, as it takes a long time to build up in the body. It is good to get your eyes checked every year you take it, but eye changes don't usually show up until like a decade of using it (and only for a small amount of people). It's a very promising medication for APS and can help reduce a lot of risks so I would definitely recommend. I'm sure you also know about doing clexane twice a day and low dose aspirin too xx

[Nes1005 in reply to Chel91]

Hello

I read your story, so wonderful that you kept going and got a happy ending with your babies.

Im so grateful for you sharing your experience and positive outcome.

It’s Pretty scary trying something new when I’ve been through so much trauma already.

The Hydroxy sounds promising from what I have read and from replies here and I guess I have nothing to lose at this point.

Good to know that you were able to keep taking Clexane and aspirin alongside Hydroxy.

Thank you so much for taking the time to reply, it’s so helpful to have the input from everyone here who’ve been through similar struggles.

Wishing you continued happiness with your little family.

Best wishes

[Snow345]

Hi, i went to a recurring miscarriage clinic and also after some failed implantation and since taking this I do get pregnant.. Although still miscarrying. It's worked for so many people I know so definitely worth a shot. You need to be on it 6 weeks before transfer.

[Nes1005 in reply to Snow345]

Thank you so much for your reply and I’m glad you had some progress worth Hydroxy but I’m so so so sorry for all your losses, and I hope you are doing okay.

Today is hard day for me, hitting me hard that this Time last year I was pregnant again with what I thought would be our rainbow after losing our boy, but it wasn’t to be. It’s so cruel, and my heart is hurting for everyone that’s gone/going through it.

The thought of one more cycle is horrendous, but I will push through so I don’t live with any regrets.

My love and support to all those here.

xxx

[Mercury363]

Yes I took this on all of my previous transfers. First and last failed. Second worked. My transfer window has changed since I gave birth, they think which is why number three failed.

200mg per day, 100 in the morning and 100 at night.

I have immuno issues and also was prescribed tacrolimus, dacortin (or prednisone) and I'm on clexane but I think most ivfers are given this or a version of it and aspirin along with the usual progesterone injections and pessaries.

I took my hydroxicloriquine a few days before transfer. They didn't know about my immuno issues when I didy egg collections and I'm about to embark of another round and this hasn't been mentioned as a need.

Hope you have a positive outcome on this round!! ❤️❤️👍

[Nes1005 in reply to Mercury363]

Thanks so so much for sharing.

All the positive stories are such a help, I know nothing is a guarantee but it’s given me some hope with these new issues I’ve been diagnosed with that maybe just maybe there is something that can help.

Thanks again for taking the time and for your kindness, it’s very appreciated.

xxx

[Eternalwarrior]

Hello lovely

I have adenomyosis, APS and autoimmune issues, in addition to a few other issues!, and on my successful transfer I was on hydroxychloroquine (I started taking it 4-5 months before transfer), steroids, heparin and aspirin. Apparently, you need to be on hydroxychloroquine for at least a few months before transfer as it takes a while to work.

According to my consultant, it is very rare that it affects your eyes, especially if you are on the recommended dose for your weight (no more than 5 mg per kg per day) and the eyes are normally not affected unless you are on it for many years and on a high dose. I was on 200 mg a day.

I lost my elder son in the second trimester and had recurrent miscarriages and I am convinced I have a living child thanks to the hydroxychloroquine and the other medication I was on.

Hope my story gives you hope x

Wishing you all the best. Thinking of you xxx

[Nes1005 in reply to Eternalwarrior]

Thank you so much for taking the time to share and I am so pleased it worked for you and you got your happy ending…..yes your story has given me some hope. It really means a lot as I am struggling with it at the moment and trying to find the belief that anything is going to work.

I am also sorry for the loss of your elder son…it’s so hard isn’t it….xxx

Thank you again for sharing, my prescription for Hydroxy is at the chemist to be collected, so hopefully taking it will be the start of something positive.

Lots of love.

Xxx

[Eternalwarrior in reply to Nes1005]

Thinking of you and wishing you all the best. Hope the hydroxy also works for you. Let me know if I can help with anything Lots of love and baby dust your way xx