hydroxychloroquine

[Hallj10]

Hello ladies.

Hope you are all well and having successful fertility journeys.

I am getting ready for my last ever transfer after 4 miscarriages. I have a few problems from a uterine abnormality, adenomyosis and a clotting gene mutation.

The next step for me is adoption as I can’t keep going on with all my problems.

I have tried lots of medication so far from clexane, steroids, Prostap, high dose folic acid and double progesterone

This cycle we can’t use clexane as needed a blood transfusion after my last try!

I always a develop subchorionic haematomas which is what makes me miscarry each time around 7-8 week!

So the plan is

Hydroxychloroquine

Progesterone suppository and IM

Folic acid

Steroids prednisolone

Just wondered if anyone had used Hydroxychloroquine before and had positive outcomes? Its very new and only had one RCT.

Look forward to hearing from you

Jenny x

[MyLittlePinkness]

Hi Jenny, I just wanted to let you know of my positive experience with Hydroxichloroquine, i can’t recommend it highly enough!. I had 4 transfers with pgd tested embryos, all using an immune protocol, steroids, clexane and baby aspirin-all resulted in chemicals. For my fifth transfer I started hydroxichloriquine about 8ish weeks before transfer, still used all the other medications and this bean stuck. I‘m now 32 weeks and have had a blissful pregnancy! I know I only have this pregnancy because of the hydroxichloriquine. Nothing else was changed. I had unexplained infertility with every test I had coming back normal. My NKC were only slightly raised. Anyway good luck with your transfer, i really hope it works for you💕💕💕

[Hallj10 in reply to MyLittlePinkness]

Hi.

Thank you so much for talking the time to reply. This gives me home. I have little as you can imagine after my previous journey.

I have started the medication now for a June transfer 🙏

[MyLittlePinkness in reply to Hallj10]

I wish you all the luck in the world. It’s an awful journey, i wouldn’t wish it on my worst ememy. Try and never loose hope, I know easier said than done💕

[Hallj10 in reply to MyLittlePinkness]

Thank you so much.

Last time lucky I hope 🙏 I need to keep hope unless there is no point in paying again and trying.

Il let you know how I get on x

[MyLittlePinkness in reply to Hallj10]

I‘m not sure how triggering good news stories are for you or if they still help..(i got to a point i cldnt read the good news stories) but if you are interested or want some hope that this transfer might just be the one to work…look on YT or instagram for a girl called Celeste……Tim and Celeste is her name for both i think…she has had a lot more hurdles than me, her story is more like yours with many miscarriages, but on this transfer she used hydroxychloriquine too and is now i think 9/10 weeks pregnant.

[Hallj10 in reply to MyLittlePinkness]

Il be honest it’s the first time I’ve been on for a while. It all gets a bit too much dosent it.

But very interesting In hydroxychloroquine results. Also adding in IM progesterone this time so that could help.

Il have a wee look thanks x

[Eternalwarrior]

Hello lovely,

I am so sorry to hear about your incredibly hard journey. I also had multiple miscarriages (4 early ones and a late one at 17+5 weeks). I, like you, also have blood clotting problems, adenomyosis and I had surgery to correct an anomaly in my womb (I had a T-shaped uterus) .

I took hydroxychloroquine just on my last transfer who gave me my baby boy, so I do think that made the difference. My previous transfer had been a top quality AA PGT-A tested embryo and it failed to implant. . . even if I was on steroids, heparin aspirin, etc. My baby boy was a lower quality embryo.

Have you been tested for ANA antibodies? Mine were very high and the doctor prescribed me hydroxychloroquine, but I had to start taking it a while before the transfer. They advised me to start taking it at least 3-4 weeks before transfer, but I started 3-4 months before.

Before my last transfer I also did EMMA, ALICE and ERA tests. My EMMA and ALICE tests came back very abnormal and I was prescribed antibiotics and probiotics before transfer. That and the hydroxy really made the trick for us, I think, and a higher dose of steroids too!

Please feel free to PM me if you have any questions or if I can help with anything. Good luck! xx

[Hallj10 in reply to Eternalwarrior]

Hi.

Again thank you ver much for taking the time to reply.

Wow you actually sound like em with all the uterine issues.

I have started the hysroxychloriqune now for a June transfer on my next period.

Yeah I have had all the bloods done for multiple miscarriage. Have a gene mutation MTHFR I think it is which can affect folic acid absorption and clotting.

They don’t know if that’s why I always get a subchorionic haematoma or a mix of the IVF and previous haematomas!

I have heard about the trials around uterine underlying infections too. Might get some doxycycline to cover me just incase ha x

[MyLittlePinkness in reply to Hallj10]

Yes take a dose of doxy too, just to cover all angles. I had a course for all transfers actually. Forgot about that!

[LizMelbourne in reply to Eternalwarrior]

Hi there,

Do you mind me asking if you stayed on Plaquenil right throughout your successful pregnancy or stopped after first trimester?

Getting conflicting advice about whether to continue throughout my IVF FET pregnancy... currently 11 weeks. Any experiences very much appreciated. 🥰

[Eternalwarrior in reply to LizMelbourne]

Congratulations on your pregnancy!! I stayed on Plaquenil throughout my whole pregnancy and even postpartum. Hope this helps. Good luck! Xxx

[LizMelbourne in reply to Eternalwarrior]

Oh that's reassuring- thank you very much for replying. I've been worried about risks to the baby but sounds like it didn't do any harm at all in your case...thanks again and very best wishes x

[Eternalwarrior in reply to LizMelbourne]

My baby boy is absolutely fine and about to turn one. After a long and very hard journey, I really think the hydroxychloroquine really did the trick for us! All the best to you too xxx

[Hallj10]

Yes I will.

Which antibiotics and probiotics did you have for your abnormal Emma and Alice test?

Thanks for the advice x

[Eternalwarrior in reply to Hallj10]

The specific antibiotics and probiotics depend on the EMMA and ALICE results and the bacteria you have/ your level of lactobacillus, I think. I am allergic to amoxicillin and various similar antibiotics so I couldn't have those, which were the ones I was recommended after EMMA and ALICE tests, as I had streptococcus. So, I had midecamycin instead. The probiotics I had were Muvagyn and I also too oral probiotics.

Good luck! x

[LBS08]

Hello

I have had 6 misscarraiges all around 6 weeks. This cycle its my 1st time using this drug and I'm currently 11.5 weeks pregnant.

Good luck x

[Hallj10 in reply to LBS08]

Amazing, Congratulations. Fingers crossed it works for me x

[GJW2018]

I took Hydroxychloroquine as part of my protocol and my little girl has just turned 7 weeks old from it! Also had a great pregnancy on it so it definitely does the trick or it did for me!

[LizMelbourne in reply to GJW2018]

Hi there,

Do you mind me asking if you stayed on Plaquenil right throughout your successful pregnancy or stopped after first trimester?

Getting conflicting advice about whether to continue throughout my IVF FET pregnancy... currently 11 weeks. Any experiences very much appreciated. 🥰

[GJW2018 in reply to LizMelbourne]

Hiya, I took it until either 28 or 32 weeks, I can’t remember which. I think they were going to take me off it around 20 weeks but repeated my immune bloods and they were creeping back up so kept me on it. Our little one is 1 today and super healthy. From my reading there are people that are on it throughout the pregnancy due to taking for arthritis so it’s ok to keep taking it. Hope this helps xx

[LizMelbourne in reply to GJW2018]

Oh that's super reassuring - thanks so much for your reply. And happy birthday to your bub! And congratulations to you on getting through the first year!!!!! Thanks again and wishing you the best,

Liz

[Hallj10]

That’s fantastic. Thank you for replying x

[Masief]

Hey there, this post is giving me a lot of hope. I'm on hydroxychloroquine for the first time after 3 miscarriages. Really hoping it helps, so let's see. I've been o it since March. Also adding in clexane as I have MTHFR and PAI 4g/5g. Also had a septum removed and discovered I had endometritis so went on a cocktail of antibiotics and probiotics. So lots of new things. Also I have had a controversial immune treatment called LIT once yk in Greece last year and another last week in London. I'm also doing a natural fet soon! If you've got MTHFR it's worth taking methyl folate or folininc acid. I've been on that for a while too. Good luck xxx

[Hallj10 in reply to Masief]

Ah I’m glad it’s helping others. I am trying again next month so il have been on the hydroxy for 5 weeks before then and probably 6-7 before transfer after oestrogen.

Ahh I have never heard of them for the MTHFR. Are they prescribed or over the counter?

Good luck with this upcoming transfer keep me updated x

[Masief in reply to Hallj10]

Good luck to you too! You can buy them over the counter. I'm taking prenatal with methyl folate in it and folinic acid on top. The prenatal is called cytoplan, the folinic is epigenetic! Bought both online. Really wish you the best xxx

[Hallj10]

Thank you very much x

[Kimbob82]

Hi everyone, great to hear hydroxycloriquine has been helpful for so many, I’ve been on it for about 6 months now. Just wondering what dose everyone is on? I’m on 200mg a day but my Immunologist has recently told me to double that… I’m a bit wary of this dosage as it seems high. Any thoughts on this? (Sorry Hallj10 for hijacking your post) x

[Eternalwarrior in reply to Kimbob82]

I was prescribed 200 mg a day, but I was told the dose can vary depending on your weight. Good luck! X

[Kimbob82 in reply to Eternalwarrior]

Ok thanks. I weigh 60kg so it’s not due to that… I’ve had three chemical pregnancies whilst taking it so he obviously thinks it not enough to dampen my immune system. I just haven’t heard of anyone being prescribed that much unless they have a full auto immune condition…

[Eternalwarrior in reply to Kimbob82]

Are you on any other medication? I was put on steroids too, but they had to increase my dose for the transfer that gave me my little boy because the dose I had been on previously wasn't enough. Maybe your consultant thinks the same as mine but with different medication?!

[GJW2018 in reply to Kimbob82]

I was taking 200mg twice a day and my BMI is healthy. I also had intralipids every 6 weeks and Clexane 40mg once a day all till 28 weeks

[Kimbob82]

I’ve had the whole kitten kaboodle. Dexamethasone, hydroxy, intrallipids (only once though) naltrexone, clexane etc. Never gotten past 4.5 weeks though

[Hallj10 in reply to Kimbob82]

Ahh I’m the same but at 8 weeks. Soon as I hit 6 weeks the pains and bleeding starts x

[Hallj10]

I have been told one a day for the first 5 week then up to two a day after transfer x

[Fertilityjourney]

Hi there.

Wishing you so much luck... I am a huge fan of this drug!

I had two IVF transfers which resulted in a chemical pregnancy and miscarriage at 6 weeks. Saw an immune specialist and added in Hydroxychloriquine, heparin and Intralipids and I am now 31 weeks pregnant at 42 years old.

I also had unexplained fertility and refused to go through more IVF until I had more answers... I knew it wasn't just my age... My results showed active NK cells and high thyroid antibodies. I think it's a little miracle drug!

BTW I also had a subchorionic haematoma but it was small and the docs weren't overly concerned. By 20 weeks it had gone! And then I had Placenta Previa but by 28 weeks that had moved up so I'm now low risk apart from my age. xxx

💜💜

[Hallj10 in reply to Fertilityjourney]

Ahh fantastic news for you. I think it’s the SCH that have made me miscarry every time to be honest.

I start sign cramps around 6-7 week and bleed. Have a scan, find the SCH and a heartbeat then miscarry a week or so later. Literally the same every time 😭

Tried clexane last time and nearly bled out. Had to have a transfusion so can’t do that again!

Will see what this cocktail does this time but like I’ve said it’s my last one so fingers crossed xx

[Fertilityjourney in reply to Hallj10]

Ah bless you, I'm so sorry. I will be keeping everything crossed for you. xx

[LizMelbourne in reply to Fertilityjourney]

Hi there,

Good on you for working so hard to get to the bottom of what was going on.

Do you mind me asking if you stayed on Plaquenil right throughout your successful pregnancy or stopped after first trimester?

Getting conflicting advice about whether to continue throughout my IVF FET pregnancy... currently 11 weeks. Any experiences very much appreciated. 🥰

[Rol81]

I’m so glad you posted this. Been great hearing so many positive replies. I started hydroxy in March . I’m taking two tablets every morning (400mg)

I will hopefully be starting an FET in June. I’m am also taking aspirin nightly and closer to transfer , fragmin for blood thinning.

Wishing you lots of luck xxx

[Hallj10 in reply to Rol81]

Good luck in your journey xx

[Beecee84]

Hi! Your journey sounds exactly the same as mine. I’ve lost two due bubs to SCH each time. I also make it to around 8 weeks, see the little heartbeat then the bleed gets so big I eventually miscarry. My first time I wasn’t in any immune meds. But the second time I was so it’s so hard to know what’s caused them. I am about to do another transfer in a few weeks and recently put on plaquenil, aspirin, clexane and 15mg prednisolone.

May I ask - How did you go with your Last transfer? Did you have another SCH? It was all ok? I’m so anxious and worried about it happening to me again. Xxx

[Hallj10 in reply to Beecee84]

Hello.

Unfortunately I had a SCH and miscarried all 5 of my pregnancies.

I nearly needed a blood transfusion being on clexane when miscarrying so that was a big no for me

I had my last miscarriage over a year ago and now going through the adoption process 🥰

Good luck xx

[NakiNaki]

Hello dear ladies, I'm writing on this forum for the first time because I need help. I have the autoimmune disease Sjögren's syndrome and the ana antibodies are 1:1000. The immunologist told me to take hydroxychloroquine 3 months before IVF. I don't have frozen embryos, so I have to do ovarian stimulation. However, I am terribly afraid whether hydroxychloroquine can and should be taken before stimulation, does it affect fertility and how many embryos I will get? I am afraid that this medicine will reduce my fertility. Can you tell me what your experience is, did this drug affect your ovaries? Thanks for any help🥰