HYDROXYCLOROQUINE - PREGNANCY

chile168

Hi Everyone hope you are not having too bad a day.

I was disgusted this to receive a letter today addressed to my daughter for an appointment TODAY at 1:30pm - Lupus Clinic London and we are in Kent. It was posted at the weekend by 2nd class post. WELL........I certainly gave them what for when I got to the clinic as there was no way she was going to miss the appointment. Also because she was previously discharged by not attending an appointment and that was because she didn't even receive through the post, so this was very important.

My daughter is 28 weeks pregnant and she suffer with inflammatory arthritis and lupus like illnesses. They said that they may put her on hydroxychloroquine. Of course she is reluctant to take anything during pregnancy. Have any of you been on plaquenil during pregnancy? Does it have any side affects?

Sorry to have moaned :oops: xxxxxxxxxx

Eve

tillytop

Hello Eve

No wonder you were cross! And the NHS is always complaining about the number of missed appts aren't they? But really glad you and your daughter got to the appointment in time.

As for the Hydroxy. I took it for a while and had no probs with it at all. As to taking it during pregnancy - I really don't know about that and, if she is at all worried, I would recommend that she speaks to her GP for advice and reassurance.

Tilly xxx

valval

not taken dureing pregnancy but do take it with no side affects val

suzygirl

Hi, I take it with no side effects, not sure about pregnancy though. Surely they knew she was pregnant when they recommended it? I would check with a lupus org or charity or pharmacist or her obgyn to see if it is ok.

suzygirl

Hi, I came across an article from Lupus UK that said low dose hydroxy, pred, aza, aspirin and heparin are safe in preganancy and breast feeding.

I will PM you the link as I am unsure if allowed to post it.

frogmorton

Hi

I BET you were fuming about that letter...hope they have given yo another over the phone????

I take hydroxy no problems, but not been pregnant while on it.

Love

Toni xx

pS what about a post on the helpline forum??

chile168

Hi Girls, thank you so much for all your support. Suzy will check my post in a moment so want to say thank you in advance for looking it up for me hun.

Toni, what made it worse at the reception was that the receptionist was having a personal conversation while I was trying to book my daughter in. While she was on the phone, said to me, take a seat. OMW........that was it, I was about to lose it but didn't. I said NO, I WANT TO SPEAK TO YOU...she took one look at me and must have seen the anger in my eyes cos she put down that phone pretty sharpish. What are mother's for lol

I will be writing a complaint to PALS at St Thomas because by the looks of it, my daughter isn't the only patient having problems with appointments.

Love to you all and hope you are all doing well xxxxxxxxxxx

suzygirl

There is a huge problem at the moment with appts for lupus patients at st thoms. Up to 15-18 months between appts for some patients, they are so overwhelmed!

Good idea to complain to PALS only way to get things changed!

chile168

Wow Suzy that long :eek:

The doctor said they were having problems, I didn't think it was that much. Do you go to St Thomas or know someone having the same probs hun?

I agree, patients should write to PALS St. Thomas to try and get the probs solved.

Either the weather or one of my illness is active....wrists killing me.

cthornley

Thats rubbish no wonder you were fuming

I don't know about hydroxcloroquine in pregnancy as I didn't get on with it and only had it post pregnancy but there is a far bit written about it

http://www.ped-rheum.com/content/7/1/9 is a study of it used in pregnancy, and the conclusion is "HCQ is not associated with any increased risk of congenital defects, spontaneous abortions, fetal death, pre-maturity and decreased numbers of live births in patients with auto-immune diseases."

Whilst I was trying to conceive, pregnant and breastfeeding I was on steroids as I'd had to come off the MTX, steroids are well known as fine in pregnancy and they monitor you more as well, didn't stop me from worrying but all turned out fine.

Is your daughter under the care of a specialist obstetrician? - If she isn't it would be worth seeing if she can be. I was (dealt with anybody with other medical conditions and pregnancy) and it helped with the reassurance for all things baby related and I got specialist referrals to pregnancy physio and other help, it also means you get fab care once the baby decides to make an appearance

Chrissie

chile168

Hi Chrissie,

Thanks for the link hun, have noted it so she can take a look at it.

She will be seeing an obstretacian on Monday and wants me to go with her. I personally would like for her to have a Doppler Blood Flow. I had it done while I was expecting her. It measure the blood flowing from placenta to baby and I guess I want reassurance for her too. I might mention it in a round about way. As they say nothing ventured, nothing gained.

She has not been too well, so I told her to have complete bed rest. As I live round the corner literally, I will pop in to make sure she is in bed. I told her that if I had to be in hospital, bed rest for 5 months waiting for her to be born, then she can spend a few days in bed and not worry about the housework.

Will keep you girls updated. I honestly can't thank you enough for the wonderful support. THANNKSSSSSSSSSSSSS

suzygirl

Its good that you are going with her to the appt. Never hurts to give the docs a subtle hint!!!

I don't go to st thoms but know many others that do and have seen them experience many problems.

All the best to you and your daughter for the appt!!!

I am suffering at the moment as well, I think it is the weather, sun caused a flare now the wet is causing the pain and stiffness to be considerably worse!!! What can you do??

Take care

kickyloo

hi there
cant sleep at the mo because of pain and i spotted this. ive been looking at drugs in pregnancy a lot lately because im currently trying and have ra. i wanted to have a drug free pregnancy but have come to the conclusion that i will remain on sulphasalazine, which is relatively safe in pregnancy. there is a small risk that it will cause the baby to be aneamic but that is something that is easy to fix once born. also continuing to take folic acid throughout the pregnancy will lower the risk. ive had many discussions with my consultant and done my own research. drs find it hard to give definate assurances on this because there have never been any official studies, due to the ethical reasons of a clinical trial on pregnant women.

i tried hydroxy and personally didnt get on with it (side effects of diareaha & hair loss) but we r all different so who knows! i have been on sulpha for 18 months with good results and so that is why i know about this med and not hydroxy in pregnancy.

hope this is helpful, best wishes,
nicky

chile168

Hi Nicky,

Last night must have been one of those nights hun cos I couldn't sleep either and appears that some of my Lupus friends couldn't either.

Yes any info is helpful hun because we educate one another. I really don't like the words NO GUARANTEE but unfortunately there are no guarantees. Being talking to people in the Lupus Site as well and some took Hydroxy during pregnancy 200mg and say it was fine. My daughter is like you, wants a free drug pregnancy but think she will be prescribed Hydroxy. Even though Im scared, I am trying to be positive for her and support her as much as I possibly can. I also spoil her and treat her like a queen. I love her sooooooooooo much and don't want her to be worried, I want her to enjoy her pregnancy. My daughter was totally planned, from conception by using a method given by obstretician to birth. He gave me the method and one month later, I was pregnant.

As for Sulphazalazine not sure because to be honest, I have not read much on it. I think it's good to reseach because that way we can ask questions. It can also be daunting because as you say, we are all different and assume the worst.

Thank you so much Nicky for your support xxxxxxxxxxxxxx

Eve