Pregnancy, flaring and hydroxychloroquine

MissKat

Hello all,

Well gosh it's been a while since I have visited you. You were all such a help to me when I was first diagnosed in 2010, you saw me through the tough first 6 months - I know that I was lucky that the Methotrexate worked for me and I have been plodding along for the last few years flare free.

In the meantime I am no longer 'MissKat' but a 'Mrs Kat', and my husband and I are now expecting our first baby in December! We are so pleased and excited. I visited you again when planning our baby and the advice on here on previous posts was so helpful - thank you all! I was off the Mtx for 3 months before we began trying with no flares, and I can happily say I am now 16 weeks...

However... I am now flaring hugely, the first flare was about 8 weeks ago and I had a steroid shot in my left knee which sorted me out for a few weeks, but now it's back with vengeance in both knees

I went to see my Rheumy yesterday, who gave me a steroid shot in my right knee (I wasn't allowed a shot in my left knee again as it hadn't been 3 months). She has prescribed a 3 week course of Prednisolone, and hydroxychloroquine.

I feel so sad because I'd really like to have a drug free pregnancy, and obviously I don't want to do anything which might harm the baby. I've been reading back through the forums, looking at the varying advice, but couldnt see anyone who had taken hydroxy whilst pregnant? Is there anyone who has taken this whilst pregnant? The Dr said it was safe, but research online leaves my mind boggling. And it would mean that once the baby is born I wouldn't be able to breastfeed...

I wonder if I can try and control the RA with just the Steroids and not take the Hydroxy? What about reflexology? Or am I just clutching at straws...

All advice much appreciated...

MrsKat x

stickywicket

Hello again Miss/MrsKat and congratulations on the forthcoming...er...kitten? (Am I allowed to say that?) I'm so pleased things have gone relatively smoothly until now and, yes, I quite agree that the baby's needs are paramount during pregnancy.

I'd not heard that hydroxy was OK for pregnant / nursing Mums but I checked out Arthritis Research UK and it seems to have the thumbs up. I suggest you don't google as there is so much dodgy stuff on the internet but ARUK are, I believe, very reliable. Here's what they say:

[i]Does hydroxychloroquine affect fertility or pregnancy?
Hydroxychloroquine is generally considered to be safe in pregnancy. It's usually best to continue taking it to prevent a flare of disease as the benefits of the medication outweigh the possible risks. If you’re planning a family or if you become pregnant while taking hydroxychloroquine, you should discuss this with your doctor as soon as possible.

Does it affect breastfeeding?
You can breastfeed if you’re on hydroxychloroquine. Although the drug may pass into the breast milk, this is not likely to have any effect on the baby. The benefits of continuing to take hydroxychloroquine to control your disease outweigh any risk.
http://www.arthritisresearchuk.org/arthritis-information/drugs/hydroxychloroquine/risks.aspx [/i]

MissKat

Thanks Stickywicket for your well wishes, and advice / links...

I know I am naughty to google, but it brought up a few articles showing group testing with Hydroxy in pregnancy, which although interesting reading is rather inconclusive. I have the leaflet from ARUK regarding the drug which, you are correct, they do recommend.

I guess I'm just looking for someone who has taken it whilst pregnant and can say "hey, yeah my baby and I are absolutely fine"...

x

dreamdaisy

There is no quick fix for this but as you are pregnant I reckon you will just have to bite the bullet and get on with it: surely the baby's needs must come first? Apparently we live in an age of medical miracles (can't say I've noticed ) and this must make things tougher for you young 'uns who presume you can have it all at no real cost to yourselves; I don't think it works like that.

Those who had drug free pregnancies were probably those for whom the drugs weren't there in the first place. I had a taste of that with asthma, I was born twelve years or so pre-inhaler days and all I had was cough mixture and suppositories (I am not French! ) For some their auto-immune goes away when pregnant but for others (more sadly I think) they acquire it once they've given birth. All I can do is wish you well, take the hydroxy rather than the steroids (steroids thin all tissue and you don't want that with your placenta and attached baby) and I hope it helps, plus ensure you have care systems in place once the babe is born because all arthritic hell may be let loose and you will need all the help you can get: RA doesn't appreciate being ignored. DD

stickywicket

I understand the need for reassurance. When I was pregnant I'd have loved to take mine out, check they were OK then pop them back in again I had a remission during the first pregnancy but only got to breast feed for three weeks as the RA came back fiercely afterwards. The second was a nightmare and all I could safely take then was soluble aspirin. That little fellow just got the colostrum for two – three days before I gave in. There was no third

MissKat

Thanks DD & Stickywicket,

Yes, I completely want to do what is right for the baby DD - that's why I'm so nervous about the Hydroxy as despite the Dr saying it is safe, there are articles out there (my sister in law is a research pharmacologist) which say there is a risk in it causing cardiac defects, deafness, sight problems... so you can see my hesitation. Believe me I don't think I can have it all with no cost to myself, and that's just it... if I have to take it easy and see this flare through, and not take up a new contract while this settles - if it means the baby will be okay, then that is what I will do!

I'm lucky in that I have just come to the end of my current contract so I have some time to rest and think about this... and enjoy some summer sun 8)

At least this has made me think a lot more, as you say DD, about after the baby is here... thankfully as it'll be a Christmas baby my husband will have extra time off as well as the paternity leave... but then what... eeeeeeeep!

x

dreamdaisy

There's no doubt it's a scary prospect but you have set your course and must see it through, and you will because this is what you want. Stuff the hydroxy and take it as easy as you can, yes? I hope Mr KK is as supportive as possible because it's his kitten too. DD

PS My late FIL was a Christmas baby, he was born on 24/12/1918.

Cariad71

Hi mrskat,

I was interested to hear your story because although I'm not pregnant yet, I hope to be soon and have been battling with the whole medication/being well or going without/flaring/causing long term damage to joints but hoping to have a drug free conception/pregnancy thing.....

It's not easy is it? Like you I was well controlled on methotrexate but have been flaring now since September and trying to manage on just steroids in their various glorious forms... IM, IV, into the joints and oral. A couple of months back I had the discussion with my rheum about starting the 'safer' DMARDS for pregnancy such as hydroxychloroquine. from what I'd read they are considered generally safe but like you, I was afraid of any potential risk (I'm a pharmacist so also research case studies etc which doesn't help!). in the end my rheum said he didn't think hydroxy alone would be worth me taking as it was unlikely to do much for me, there was the option of 'harder' drugs such as azathioprine or anti TNFS which some people do continue, but for now I'm trying to stay off everything unless things get really bad. I managed to come off pred 2 weeks ago and my NSAID but I'm not sure how long I'm going to last! The added worry of how long it will take doesn't help, if someone could tell me that would be great!

I'm sorry I haven't got any particularly useful advice for you, balancing the risks of taking drugs in pregnancy vs their benefit is always difficult and i understand how you're feeling. There are very few drugs that people can tell you are 100% safe in pregnancy but it has to be an individual decision based on how bad your flare is and how you are coping.

I hope you feel better soon xx