I have an auto-immune condition and 10wks pg- anyone else in the same boat?

[corneliusedgar]

A bit scared as having a slight flare up. Just wanted to know if anyone out there have some experience? Thanks

CountessD: plaquenil is an antimalarial which has anti-inflammatory properties apparently. Contradictory info whether safe in pg or not but I think consensus suggests that it's ok.

Frogs: I've never been on azathioprene even though consultant did suggest it at one point but I declined as condition was pretty stable and I wanted to take the bare minimum to help me through the day.

I've just came back from camping in front of the consultant office . You're right, had to get through dragon receptionist first. So lots of tears and pleading...she could tell I was pretty desperate so was allowed 5min. Consultant advised to up the antimalarials to max dose (400mg) and steroids to 15mg for 1 wk. So am going start today. Really really hoping it'll work. Apparently once the trigeminal pain recedes I can try to cut down the steroids again. I'm hoping to be on 7.5mg towards the end of the pg so that I can breastfeed. Consultant thinks its a tad optimistic. Anyway, just wanting to get through a day at a time. Feeling utterly wretched as not had much sleep for days now due to the pain. What a bum !

CE x

Hello,

Delighted to find this thread as having huge issues with drugs and pregnancy at the moment.

Frogs and Countess Dracula, very interested to hear you both remained on azathioprine during pregnancy. I have uc with some features of crohn's and was on steroids for ages until azathioprine (aza for short) kicked in. I went from misery personified to fighting fit, but it took nearly two years.

Fast forward and I'm 6/7 weeks pregnant. Was told in London it was on balance best to remain on aza for duration of pregnancy. Have come to Ireland and first thing my GP did was take me off them 'cos she said they were cytotoxic. Seemed quite indifferent about whether I started bleeding or not. I know there are different prescribing guidelines in different countries and Ireland is particularly conservative (i.e. St Johns Wort is not otc here, it needs a doctor's prescription). Thing is i'm absolutely shellshocked as I'm terrified of that constant bleeding, etc.

I'm only off aza for a week. Fingers crossed as I don't know what I'll do if I have a flare. Was so looking forward to this pregnancy and new bubba.

WG, azathioprine is classed as a cytotoxic drug. When I first started taking it in 1984 it was still v. new, and I was told repeatedly that it was teratogenic and under no circumstances was I to get pg. I also had to have monthly blood tests to check white cell count, blahdiblah.

But 20 years later, experience seems to have shown that although it theoretically has the potential to do some very nasty stuff, in practice it behaves more benignly than might have been expected. Protocols these days seem to be far less insistent on blood tests, and although the packet leaflets will tell you not to get pg or breastfeed, that seems to be mainly back-covering on the part of the manufacturers rather than based on any real evidence of harm to babies. As I said, my consultant had a whole wall full of cute baby pics from mothers taking azathioprine, and no evidence of any actual problems. Make sure any information you act on is coming from someone very senior who has extensive experience of large numbers of patients taking your particular drug combination, rather than from someone who's relying on what they remember from second-year pharmacology supplemented by reading up in the textbooks.

WG, have just re-read that your GP told you to stop taking the Azathoprine. This is not a decision he/she is qualified to take get him/her to phone your consultant in London and get the proper lowdown. Really don't just stop taking it I phased mine out over a very very long period, and have avoided a relapse, but it's not a drug that's prescribed by non-specialists, and any change in your dosage or regimen should be overseen by someone with consultant-level expertise in the treatment of your particular condition.

Another followup to say that I have been told all manner of bllocks from sundry medical personnel, most of whom should have known better, about what I can/can't do with my (v.rare) medical condition and how I should handle my drug regime/pregnancy/breastfeeding/lifestyle. You should only take instructions from someone whose opinion you know* to be reliable. All others you either ignore or tell them to phone your consultant. A GP should not be over-riding a consultant's instructions.

God I so agree
get back on that aza now!
Call your consultant....
My god some GPs make me maaaaaaaaad