hydroxychloroquine

[ClaireP22]

Hi All,
I’ve been prescribed hydroxychloroquine after a few miscarriages but I’m nervous about taking it.
Has anyone else taken this and been successful without any side effects?
I don’t have the killing cell but after a few miscarriages, they offered me to start taking this. However, reading the side effects on the leaflet has made me feel a little anxious about taking it.
Just wondered if it had worked for others in successful pregnancies.
Would love to hear your stories.

Hi @ClaireP22, I'm on it for a year and a half now. It was prescribed by my current miscarriage consultant. It did give me tummy troubles to start with, but it's all fine now. Just make sure to always take it with food or after food. It will take at least 2 months to work and 6 months to have a full effect. I had to have a eye test after one year of taking it and all was fine. For me it put my autoimmune illness into remission, I'm currently 8 weeks pregnant.

@Wireless77 thank you for letting me know and congratulations on your pregnancy.
They didn’t tell me to take an eye test after a year but pleased to hear that it has worked for you (without any side affects)
There’s hope yet!

Yes I took this in my first pregnancy for repeated ivf failiure everything was absolutely fine. One consultant did tell me that there is a slight risk of it causing eye problems in the baby I never bothered to research this further though.

@Misty999 thank you for letting me know. And was everything ok with your eyesight and your first child’s eyesight?

Hi! I've been taking hydroxychloroquine for 10 years for lupus and increased my dose during pregnancy due to high levels of risky antibodies. Everything went perfectly fine! It's very safe for pregnancy and the benefits greatly outweigh the risks if you've been prescribed it. (Don't listen to any horror stories in the media regarding HCQ and Covid. They had to play up the risks for the drug because it suddenly shot into the spotlight to prevent people stockpiling or taking it themselves).

The eye damage associated with HCQ only tends to develop after 5 years of daily intake. I recently had my 10 year checkup and there was no evidence of damage. The chances of anything happening within the duration of a pregnancy is vanishingly small however doctors have to err on the side of safety and warn you of all the risks.

Even if there are retinal deposits, it's reversible once the medication is stopped and often affects colour perception. So it tends to cause mild colour blindness rather than loss of eyesight.

@CrystalPuff Thank you for letting me know.

Yes we were both fine. I forgot also had an eye test for myself as well. I took it on and off for a few years and then for all of pregnancy. It's a malaria drug and has been around for years and pretty safe. Tbh I was so desperate for a baby I would of taken anything that improved my chances I also did the LIT, intralipids and IVIG.

@Misty999 Thanks. What is LIT, intralipids and IVIG?

@clairep22 the next level in immunotherapy cost me an absolute fortune. The debate is out on if any of it actually works but when you are desperate you will try absolutely anything. They are all treatments that dampen your immune system to stop your body attacking the embryo. If you join the fertility friends forum there is lots of info on there that explains it really well under the immunotherapy thread. I will warn you though once you start down the private immunotherapy road it's very hard to stop.

I have been taking hydroxychloroquine for about 2 months now for recurrent miscarriage and so far no bfp. I feel less inflammation and less cramping around my period...womb feels like it has been on fire since emergency csec 4 years ago so that's a positive. Only downside is feeling hungover for 1st month of taking it and have experienced fuzzy eyesight and a bit of hair loss. After 10 consecutive mc's trying for baby no 2, it feels like my last shot!! good luck and lots of baby dust to everyone else trying it xxx

@MuddyMoon thanks for your reply. It’s good to hear from you and your experience of it so far. That doesn’t sound great about your eyesight and hair loss though. That’s what I’m worried about, especially with the eyesight. Hope this goes fairly quickly for you. I’ve just started taking it so a little nervous about any side effects.

Hi @ClaireP22 I feel hopeful that it's a sign the HCQ is well and truly in my system although my friend joked I have a mullet like Joe Exotic 😅...it's just went all fine and stumpy in places around my fringe. I am going to book an eye test this week. TBH taking it during lockdown has been a blessing because I have been able to slow down and focus on my treatment plan. I hope you find the plan that's right for you. it is expensive but our only hope right now xxx

I take hydroxychloroquine for arthritis but decided to take myself off it before getting pregnant. Was told by my consultant that it is safe to take in pregnancy should I want to start taking it again, left it to my decision though as I'm not dealing with arthritis symptoms at the moment.

Never had any side effects and preffered it over any other more intense medication I could have been on. Get my eyes checked once every 8 months, so far so good.

@Katbaby thank you for letting me know. That’s good to know and has put my mind at rest. I’ve just started taking it so will see how it goes. Fingers crossed!