Anyone taken sulfasalazine (salazopyrin) when pregnant and BF?

[cakeywakey]

I have rheumatoid arthritis (RA) and take sulfasalazine (salazopyrin)to keep my inflammation down. I was diagnosed in the year after my DD was born.

One of the reasons that my rheumatologist put me on it was because it's considered the safest treatment to have if you want to have more children, and you can continue taking it during PG and BF. He's given me some info on RA and pregnancy but it's very general.

Have you taken sulfasalazine in this situation, and do you have any advice?

Meant to say that DH and I are considering TTC again

Cakeywakey I also have RA, diagnosed for 10 years. i had been taking Sulphasalazine & Diclofenac with fairly good but not outstanding results, came off them totally before TTC with both of my kids. Totally pain-free during my last pregnancy (baby son now 14 weeks) but had a massive flare-up 2 weeks after giving birth. Was in a really bad way as trying to deal with newborn and toddler-with-an-attitude, in massive pain. Have had both my knees drained and had steroid injections which helped at the time but still get a lot of pain.

I didn't manage to breastfeed either of my kids beyond 3 weeks as was in so much pain so had to go back on the meds, my rheumy had advised staying off S. til I wasn't bf anymore,I was told not enough research done to prove it is safe but I'd go with what you've been told !

Now I have had all the children I want to have my rheumy has put me on Methotrexate, still early days but is meant to be very effective, though definitely not safe if you are pregnant, breastfeeding or trying to conceive as is pretty potent stuff, affects your fertility and also suppresses your immune system.

I would say have a look at the Arthritis Care website-
www.arthritiscare.org.uk/Home

There is a lot of useful info there as well as a forum which can unearth some useful stuff too.

Best of luck with it and post again if you'd like to ask anything else (or equally we can have a bloody good moan about how crap RA can be !!)

I have had RA since I was 16 (now 30). Was on Methotrexate, Hydroxychlorouquine and Sulphasalazine until June this year (managed condition quite well), when I stopped taking them all in order to TTC. I have been advised to try going without, but am aware that both Sulpha and 'chlorquine are sometimes taken in pregnancy. Not sure about BF though. Best bet is to speak to your rheumatologist about any exact plans to TTC.

Taking brufen and diclofenac are definite no-no's when TTC/PG.

mumofshortie I would be interested to hear of your RA pregnancy experience, as at the moment it's quite a daunting prospect. I'm desperate for a PG remission!

Curlycasper Gosh, how I know about that trepidation ! i really had to think long and hard about TTC this second time as I had been in such a bad way with my first pregnancy.For the 1st & 2nd trimesters,I was pretty sore and stiff, took the maximum daily dose of paracetamol to help with the pain and pushed myself to get out and do exercise every day, tried with the healthy eating (couldn't stick to that for very long though )

Just as well I was in remission by the 3rd trimester when I was at my heaviest & most uncomfortable, no pain or stiffness at all- brilliant ! I had been worried about how my body was going to react to being in labour but it was actually okay, everyone gets pretty exhausted anyhow, don't they ?!

It does show you how effective the RA drugs are when you do come off them !

Curlycasper good luck with TTC & sending pain-free vibes to you ! How are you coping with the pain in the meantime ?

I don't know about you ladies but I find the 'whole body knackerdness/ can't be arsed feelings' worse than the pain sometimes ! My affected joints are mainly knees, ankles, twingy hips, tingly fingers & wrists, funny elbows .... how about you ?

Also Cakeywakey and Curlycasper- are you into eliminating anything from your diet or limiting your alcohol intake ? I find it really hard to cut out the stuff I love (chocolate/crisps/wine ...)and am not prepared to be a martyr to this flipping condition !!!!

I was on Sulfasalzine when ttc dd 3 years ago then stopped as soon pg (due to rheumatologist advise) but I got to about 25 weeks and had to go back on it because of increased pain/stiffness etc.

I stayed on it the remainder of my pg and also while bf dd. Imanaged 8 weeks of bf but had to stop then as I needed to go back on methotrexate and anti-inflammatory drug so it is "safe" but they recommend you to try and manage without as all drugs may have some effect on the baby.

Hi - thanks for sharing mumof. Mucho appreciated. Sorry your first two trimesters were bad. But really to hear RA did not affect labour.

Almost every joint of mine has been affected at some point - even jaw and ribs! But shoulders, hands/fingers, knees and hips are the worst. I had several little toes (both feet) pinned a few years back and don't get too much grief there now. Big toes, on the other hand...

For now, I'm doing ok. Shoulders keep freezing up, and knuckles like boxing gloves, but (touch wood) things are not as bad as they could be on the pain/swelling front. The tiredness, however, is immense. I swear I could happily go to sleep on my desk by 11am each day.

I'm pretty positive about my condition and have never let it hold me back. I can imagine it getting bad if we have to TTC for ages (being tested for PCOS) but I'll deal with that as it happened. I've had this thing almost half my life now (16 years without, nearly 15 with), so it's part and parcel and that's how I treat it.

I have cut nothing from my diet. Tried various things over the years but the misery was never worth it!

Wow, that was long - is this turning into a general RA thread? I hunted for ages to find any current MNers with the condition. Do any of you think it is worth actually starting a dedicated thread?

Cakeywakey im 5 weeks pregnant and on sulphasalazine. I take it to many my RA and UC. Was wondering how far in the pregnancy you are and is all well. I have been concerned about taking it while pregnant. But when i reduced my dosage during the first month i began to flare badly. Now my knee is very swollen. Im back up to my normal 2g and symptoms are better. I have no choice but to stick with the meds :(

To manage my Uc and RA! Mis spelling!

Can I jump in - I have RA and am just about to start TTC having just weaned off my methotrexate and hydoxchloroquin. I can feel the RA starting up in my hands, feet and hips (that doesn't help TTC I tell you)! I don't have the option of Sulphasalzine (have had UC surgery so wrong gut bacteria) and am worried about the inflammation during pregnancy. I don't know if I'm just generally more scared as my drugs were a sort of safety blanket.

Sorry if this is a sidetrack, has anyone been arthritic when they conceived? Is it harmful or does is go down when you get pregnant. I haven't met anyone in real life in my situation and feel quite teary that there is a wee group here who might understand!

hi im about 6 weeks pregnant,im taking sulfasalazine 2 tablets 2x a day,my rheumy said its ok i was on plaquenil when i got pregnant,i dont no any female who has ra,i feel kinda alone,i cant stop worring about takin the tablets whist being pregnant,x

I wouldn't worry too much Taneia, I only say that because I was told that my Rheumatologist said he would prefer me to be on Sulphasalzine than off it (I originally wanted to TTC 3 years ago but in weaning off drugs my UC went out of control and had to have surgery). I don't think we get to make all the perfect choices, you can only go with the hand you are dealt and make the best of it. For us the choice is between the drugs and risk of inflammation, not neither - and at least the drugs are well regulated and known. There is no point in worry or guilt over doing the least bad choice in a hard situation. In fact the positive I take from having RA and UC is giving myself a break when life is hard, you would never judge anyone else poorly for making these decisions and you should treat yourself with the same kindness.

So sorry you feel alone, I do sometimes too, it is hard having difficulties that others don't understand - however, most people have something that they feel this way about and you might be surprised how ready they are to listen - give them the chance. Hope it goes well for you and you get to enjoy your pregnancy.

Hi,RunnerHasbeen,ive only just seen your message,thanx for ur support.

Hi everyone im 5weeks pregnant and i have crohns. I take sulfasalazine three times a day. Ive read so much on taking this medicine while pregnant and im soo confused.I havent talked to my gi doctor yet but reading everyones messages i have hope that everything will be ok. If any one have suggestions please feel free to comment.

i know it is old thread .. but i'm so worried because i was on sulfasalazine from 3 months ago without taking folic acid (my doctor never mention folic acid for me ) .. and now i discover that i'm pregnant ! .. any help ?

Hi,

Is using Salazopyr EN-tabs during pregnancy?

Thanks.

Hi, yes. Though I am reluctant, my doctor insisted I take 4 mg a day (2 tablets, twice daily), along with additional dose of folic acid. I am now 23 weeks and I would love to go off it for the last trimester but let's see what the doctor says. I am paranoid about side effects to the baby.....

Relieved to see that I am not the only person wishing to try for another wee one who is taking sulfasalazine! Funny how you sometimes feel that you are the only person hobbling around in pain. I am 35. Have been plagued with flares in ankles and knees for a long time and have only recently been diagnosed with inflammatory arthritis. Have only been on the tablets for 5 weeks so will be a while until I feel any effects. Was considering not taking them at all as I have been really paranoid about the effect of them on foetus in regard to them hindering absorption of folic acid and overall effect they may have on unborn and during breast feeding. my son who is 20 months was born with a sacral dimple (even thou I took a lot folic acid before I fell pregnant) so very concerned about the dosage of folic acid I need to take. My rheumatologist did prescribe me 5mg tab of folic acid to take once a week but I have also been taking the usual recommended dosage of folic acid everyday x 2 as so concerned about it. I have done a lot of reading and asked doctors opinions on taking the tablets prior to and during pregnancy and of course they always say it's your decision at the end of the day! But I have decided to stay on them and have found some reassurance from some of the above posts that I am making the right decision. Good luck to my fellow arthritic sufferers! Xx

I'm 28 weeks and on sulfasalazine - tried coming off to conceive but just couldn't cope with the flares. I'm also diabetic so taking 5mg folic acid daily which put my mind at rest! They can do a blood test to check folate levels do that might help reassure you @Siany71?

I'm not sure about breastfeeding as have heard conflicting advice so would be keen to hear from others who've done it on ssz. Just not sure I could cope without any meds at all with a newborn and 3yo!

Thanks @lottylizzy, good shout about the bloods to check folate levels. Am getting regular bloods done anyway so will get them to do extra to check! And request more folic acid. Completely understand your point about not taking any meds with newborn and toddler as that thought has completely crossed my mind when my flares are really bad! Would be terrible! Am also keen to hear from anyone on the breast feeding front also has have read too many conflicting reports etc.

Hi,

I posted back in May as I was 23 weeks pregnant. I was taking 2 mg of Salazopyrin a day (2 EN tablets in the morning and two in the evening).
I really wanted to go off them but was strongly advised by two doctors not to. I was also taking Materna vitamins and 5mg of Folic acid.

My doctor allowed me to reduce my EN tabs to two a day for the last trimester.

I gave birth end of August and thankfully, we have a beautiful, healthy daughter. No effects so far from the Salazopyrin :)
Just wanted to let you know because I was so stressed about having to take it- and felt super guilty and worried. I know you won't stop stressing but maybe it will give you some peace of mind.

Then started the debate about breastfeeding :) Again- I wanted to stop taking it, but the doctor warned that after birth, a flare up (reactive arthritis) is common within 3 months. Spoke to two doctors and both said the following:

• minimal amount is passed through your breast milk and the health benefits to you will outweigh the risk.
• The paediatrician is aware and monitoring her for any side effects
• She is now 6 weeks and I am taking 2 mg a day and exclusively breast feeding and so far she is healthy with no side effects.

Apologies for the long post- but thought this might be helpful. Of course I am still concerned about long term effects :) I don't think I'll ever stop worrying or feeling guilty.

Hi @athem888,

Great to read your post and it definitely gives some comfort to hear from someone who has been through a pregnancy and breastfeeding taking the same dosage of tabs. My rheumatologist and doctor had suggested lowering dosage or completely coming off tabs during a pregnancy but I think I will cross that bridge if I am lucky enough to fall pregnant again. Glad to hear your little one is healthy and doing well. Long may that continue. Thanks.

I have taken sulfasalazine through 2 pregnancies and have BF 3 children. I was diagnosed with RA during my first pregnancy and my rheumatologist was very keen to get me started on sulfa asap, but we decided to wait until I gave birth. Started on 1mg a day but quickly moved up to 4 mg per day. No problems whatsoever. Stopped BF when I was ready, nowt to do with medicines or RA. I had to increase to 6mg per day, then had DC2 and BF for 11 months. Went on to have DC3, reduced my sulfa to 2mg per day as RA got much better in pregnancy but had to increase back to 6mg per day a few months after giving birth. Now we've finished having babies I think I will be put on to methotrexate too. Not so keen about that tbh.

But wrt sulfasalazine, there have no side effects so far. Hope that gives some reassurances to someone.

Thanks @freezingmyarseoff, good to hear from other mums who have gone through pregnancies and breastfeeding whist on sulfasalazine. Saw rheumatology nurse yesterday and she said they would look to put me on methotrexate once family finished which I am not that keen on but will be a while before I am at that stage.
Thanks

Hi
Reading all the posts has been a relief as it's hard to know what to do for the best. My friends don't understand bc they haven't had to consider this when TTC. I'm 29 diagnosed with RA 5 years ago and was on the below medication:

Sulfasalazine (SSZ)
Hydroxychloroquine (HDCQ)
Folic acid
Methotrexate
I have only been told to come off methotrexate 3 months before ttc (which I did in Sept 15) and we're now ttc (early days still) but ok to remain on everything else. I worry if I'm doing the right thing by staying on the other medications (SSZ and HDCQ) but already struggle with pain by just not being on methotrexate. Did anyone of you stay on the others (SSZ and HDCQ) throughout pregnancy? Also how often did you take folic acid at 5mg? It's nice to find others who have similar issues/worries!

Hi Georgina4,
I am early stages TTC and currently taking 4 tabs of SSZ daily, 5mg of folic acid daily (apparently enough for an army according to my doc) and iron tabs as anemic now which I never used to be sadly!
All the best TTC!