Hope you are all feeling well today. I am just new to this group, I specifically look online for people who are on the same journey with me or been to.
I was diagnosed with Mild SLE 5 yrs back and was on medication during the first few months with steroids and Plaquenil. When the dry skin on my face was gone, I totally stopped the medication but I try to be good with my diet, occasional glass of alcohol and proper sleep. But during this time I feel good without the medication for 4 yrs now.
But this year my husband and I are trying to have a baby and the procedure will be IVF. I went to see my rheumatology just to check if my blood is fine and ask a general question about the risk of having a baby before the procedure. She told me that I needed to be on medication during the pregnancy stage for the safety of the baby and she assures me that Reconil is safe for the baby. I am a bit concern about taking drugs during the pregnancy as I am afraid that my baby might suffer the side effects of the medication. Any possibilities crosses my mind as I know mostly medication is not good during pregnancy.
If anyone please had took hydroxychloroquine during their pregnancy can you please share to me your experience that the baby will be perfectly normal at birth and their growing years. I can not just forgive myself if anything bad happens. An honest truth would be really appreciated. I know doctors mean well but I would like to know the side of those with a first hand experience. Thank you so much.
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Hopeful_Carla
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Whilst I don't have first hand experience of Hydroxy and pregnancy I've looked it up in the lupus book' talking about lupus' by Triona Holden and graham Hughes. They say that this drug is safe to be taken in pregnancy and it's a very safe, effective drug for mild lupus!. I'm about to start it too!.
Hope that reassures you and I wish you well for your forthcoming baby. A very special time for you. Keep us posted how you get on. X
Hi Misty14, thank you for your feedback it is greatly appreciated and reassuring. Good luck with your own journey and I hope everything works out for you. XO
Thank you Carla for your lovely message. Glad my reply reassured you. I'm starting Placquenil tomorrow so fingers tightly crossed for us both. I do hope all goes well for you. Keep us posted. Xx
Hi Carla, I was not on plaquenil during my pregnancies however, I just retired a short time ago after being an OB/GYN nurse for many many years. It is safer for you to be on the medication then off. I can tell you we had many patients on plaquenil with no I’ll effects to their babies. Have you also been tested for lupus antibodies for Hughes syndrome? It is very important for you to know that status before you get pregnant, because they would need to put you on blood thinners if you are positive. Also having lupus has in general puts you at higher risk for pregnancy. Hopefully your doctors will follow you closely, you should be seen between five and six weeks for your first visit, and sooner if you’re positive for Hughes syndrome. The best of luck to you, XO Nan.
Hi Nan, Thank your for the confirmation that others are taking the medication during their pregnancy without the ill effect on the baby. That is a major relief. With regards to Hughes syndrome, I am not sure, my doctor only told me that I also have Sjogrens + SLE. But I will check with them at my next appointment (which is shortly). Thank you for the tips, once I get pregnant I will be proactive with my doctors appointment. All the best. XO
Hydroxychloroquine is recommended for safe and successful pregnancies if you have lupus. It has been shown to be safe for the mother and baby during pregnancy and breast feeding. It can reduce the risk of complications during the pregnancy which is why it is recommended. In some cases they will even start expecting mothers on the treatment if they weren't taking it already.
We have an article about lupus and pregnancy on our website which includes some case studies that may be of interest. lupusuk.org.uk/lupus-and-pr...
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