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Anyone taken sulfasalazine (salazopyrin) when pregnant and BF?

42 replies

cakeywakey · 22/10/2009 22:33

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?

OP posts:
Georgina4 · 13/01/2016 17:26

Thanks Siany71. My folic acid is 5 mg but only 25 days (still on same prescription for folic acid from methotrexate days as it countered my awful nausea from taking methotrexate). That's really helpful as was thinking I needed to take it daily and will speak to my GP. Good luck ttc too Smile!

dodonada · 26/11/2016 15:00

salazopyrine and pregnancy can i take it ? i m soo skire about this

Redstorm2807 · 01/02/2017 03:19

So amazing to find this thread, it is a lonely life sometimes with this disease. Very fed up of people who don't know anything about ra telling me I'll get better if I take this supplement or cut out gluten etc etc

I was diagnosed with ra a year after dd was born and we're looking to start ttc again. I came off methotrexate anyway (I was losing a lot of weight and hair) and now just on sulfa and hydroxychloroquine. Was anyone on prednisone when pregnant? I'm tapering and have got down to 2mg per day but would like to get off before we get pregnant.

SiriusMum · 08/02/2017 01:12

Wow so happy to find this post.
I am newly diagnosed with RA - had symptoms before pregnancy which disappeared completely until 7 weeks PP when I had a massive flare up all over, could barely move for days and had no effect of ibuprofen or steroid shots. No medication up until this point, am now on prednisone 20mg daily + ibuprofen, which makes it bareable. It not good.
Am starting salazopyrin tomorrow, then 3 months PP. have been holding off starting because I am so worried it will affect my son as I am breastfeeding. Wanted to be sure that he got full 3 months of breastfeeding without problems.
Am now relieved to read that there are mothers out there with success BF while on salazopyrin :):) I hope I will be one of them

MrsM31 · 08/02/2017 15:48

So happy to have found this discussion.

I am 31 this year, was diagnosed with Psoriasis Arthritis end of last year. My biggest frustration has been that I feel I am too young to have any form of arthritis, I don't even have any kids yet. It helps to learn that I am not going through this alone.

My condition is not unbearable yet, I have stiffness in my index finger, mainly in the morning and a little bit during the day. I am now also starting to experience a bit of pain in all the other fingers. I also have a painful ankle.

My rheumatologist had initially scripted me Methotrexate. I read about it and I felt very uncomfortable about taking it, my husband and I are planning to conceive later this year. She insists it's okay if you stop 3 months prior to TTC but I would really rather not risk it at all. She has now scripted Salazopyrin with Folic Acid and Corticosteroids. I intend to stop taking the above in 6 months, when I come off my birth control pill and then start again after the baby. Hopefully I won't have any flares.

SiriusMum · 09/02/2017 07:13

I hope that for you too 🤞🏼
I am also worrying about potentially having to stop the drugs before my next pregnancy, but have not laid out a plan with my reumatologist yet...
tell me about the feeling about being to young for this nonsense 🙈 At my worst I couldn't even stretch my legs to walk to the bathroom at night - felt 100 years old 🙈

SiriusMum · 09/02/2017 07:13

I am 30 my self

MrsM31 · 13/02/2017 06:48

Did any of you ladies get nausea and headaches when you started taking the Salazopyrin? If yes, how long did it last? I only started taking it last week and have been feeling quite sick.

SiriusMum · 13/02/2017 09:29

I only just started last week as well, but haven't felt sick at all. Only thing I experienced so far is feeling really hot app 1 hour after taking it at night 🤔

Snails22 · 26/03/2017 20:55

Hello all, I've just discovered this thread and finding it really helpful. I have a 3 year old daughter and have suffered from some kind of inflammatory arthritis for the last year and a half, which is the main reason we haven't tried for a second yet. They thought it was reactive arthritis and that it might have gone by now but I've just suffered another flare up so they want to put me on Sulphasalazine as it appears likely that's it's a long term condition. However, I can't decide whether to start taking it as we're considering trying for a second baby this year. I'm turning 39 next week so I don't have much time to waste. As many people report the condition gets better during pregnancy, do you think i should just try and get pregnant asap and hope for the best, starting the drug after birth, or should I start taking it now to control the symptoms before TTC? It seems from all the available evidence that Sulphasalazine is safe to take while TTC as well as during PG. Any thoughts?
Also, I found this really helpful as it's scientific evidence based on research rather than hearsay...

www.ncbi.nlm.nih.gov/pmc/articles/PMC4206648/

Finally, i just wanted to offer my sympathy and support to all you fellow mothers who suffer from arthritis. It's a really painful, unpredictable condition which i find mentally and emotionally, as well as physically, debilitating.

SiriusMum · 18/04/2017 21:57

Snails22 - sulfasalazine should be safe for you to take when pregnant as well - so I would probably start taking it, in case it takes some time to get pregnant - at least you might get relief from the RA until then - and also, the symptoms dont always better once pregnant :/

I unfortunately had to stop taking SSZ once I reached full dose because I got a serious allergic reaction to it :( - rare so I wouldnt worry.
Now they want to start me on plaquenil(can also be used while breastfeeding and pregnant, but less effect then SSZ) instead, but that could take 4-6 months to work properly, and I am planning on a new pregnancy this fall, so I am kinda in the same dilemma - start now, and then maybe stop again before I even experienced the effects - or wait and risk a longer period with pain/symptoms if I dont get pregnant right away :/
I think I have decided to start now... But have yet to talk to the RA-nurses about side-effects and such.

And my sympathy and support back to you, and the rest af you ladies - its frustrating not just being able to focus on your new life as a mother and on your wonderful child/children

MrsM31 · 19/04/2017 09:57

Snails 22 - I am in the same predicament. My plan was that I would stop taking the SSZ when I come off birth control end July, but I feel that it is making a real difference to my condition and I I hardly experience any pain now, so I'm now thinking that I should continue with it even when TTC (especially because you never really know how long conceiving will take). I think I will continue then try stopping when actually pregnant to see how I feel then, if still in a lot of pain, I'll continue with the meds.

Snails22 · 19/04/2017 20:17

Thanks for your messages Sirius mum and MrsM31. Well I discussed all this with a really kind and helpful nurse at the rheumatology dept and she said she's been prescribing Sulphasalazine for 15 years and to many women who were about to TTC and it's very safe. In fact she said I might have more chance getting PG if I start taking it as it will (hopefully) control the flare ups. She said if your joints are inflamed, your body is in a kind of emergency state / thinks something's wrong and you're less likely to conceive. Interesting!

Anyway I can't look after my daughter or go to work when i have these flare ups so I feel I need to control it somehow as it's so debilitating when it happens. So I've started taking it, I'm in my 3rd week so on 3 tabs a day, going up to 4 tomorrow, so fingers crossed. I'll wait 3 months to see how it goes and then probably start TTC then, all being well.
Good luck to both of you too! Let me know how it goes whatever you choose to do.

jcrussell86 · 20/04/2017 20:48

hi, currently taking sulphazine and i am just over 5 weeks pregnant (rheumatologist says it is ok to take) however i have been told to take extra folic acid (in addition to the recommended dose of 400 micrograms per day) as the sulphazine can deplete it but nobody seems very sure how much extra to take. the booklet i have on sulphazine says an extra 5mg but that works out to 4000micrograms if i am calculating correctly

MrsM31 · 21/04/2017 06:18

@jcrussell86, I think 1 folic acid tablet = 5mg? Don't know about the micrograms. I'm currently on 5mg a day but not pregnant. So if your booklet states take an EXTRA 5mg (over and above normal dosage) it sounds like it's saying take 1 extra tablet?

Redstorm2807 · 30/08/2017 10:49

Hi again everyone, I'm 27 weeks pregnant now and have been on sulfa 6 tablets a day and hydroxy all the way through. I hope to breast feed and will continue to take this dosage. My rheumy said its better for the baby to have the ra controlled and take the drugs. The folic acid dosage still doesn't seem clear though, I've been taking 5mg every day.

Anxcromum · 17/02/2024 13:11

Can see this has not been posted on in a long time but, personally, I came looking for sulfasalazine forum chat (I have ocd and worries always come full circle for me) and in case anyone else comes looking in future I thought I’d add:
I have Crohn’s disease and arthritis. I have taken sulfasalazine in massive doses for >10 years. I take 4 tablets (500mg each) 4 x daily, so 8g.
I have 2 children; aged 4 and 7. Both were conceived, carried and breastfed on this dose. I took folic acid 5mg daily during pregnancy.
I continue to feel hugely guilty for this but it was what I was continually advised to do, and I queried it many times during pregnancy and prior to breast feeding. On several occasions I was given information with previous examples of other sulfasalazine taking mothers which were all fine - albeit they were never on the dose I was taking (6g max example). It also concerned me that I am very slight (8 stone) and had very small babies (around 6lbs) but was advised to carry on. There didn’t appear to be any real monitoring of my babies during breastfeeding.
I will never know if any future health complications will be as a result of my drug taking. But I put my faith in my consultants who are making risk based decisions daily and treat every individual / situation based the information / experience available to them.

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