Newbie here... first flare up with a newborn :(

Hi everyone, it’s been really nice to read everyone’s experiences with PsA. If anyone is interested in reading me vent for the next few minutes, I would love to find out if you have had a similar experience or perhaps any advice for me who is just about to start rigorously managing PsA. Around 2011, I was 23 when my first symptoms happened in nursing school, thought it was dandruff from the stress of studying and taking the NCLEX (but it was psoriasis). Unfortunately, in 2012 I experienced a bad knee effusion, they removed the fluid, ran some tests, all was fine/normal and my first rheumy thought nothing else of it. Then shortly after, I had my first real patch of noticeable psoriasis on the same leg. In 2013, I had chronic knee pain, plantar fasciitis, t-band syndrome and my second rheumy dx me with PsA. I was a little shocked, unsure of the implications, but from what I understood at that time, it was serious and incurable. To be honest I was a little in denial, considering I had these aches and pains and that I was just too young for arthritis. I was planning to have a baby at that time so my second rheumy recommended Enbrel first, and not Methotrexate (since its a category X drug for pregnancy). The problem is I HATE needles. I can give injections all day to other people but self-injection is a struggle. My husband had to do it for me. I spaced them out to 1-3 weeks at a time without telling my rheumy because of my fear of self-injection. Otherwise I had great results, I felt like I was living with chronic pain I forgot how it felt to be just FINE. I stopped taking Enbrel few months before I became pregnant. Then I went into remission and had a healthy baby boy in November.

Fast forward to a week ago my entire right hand is now swollen, few of my toes are sausages, knee pain returned plus chills and body aches, I could not lift my shoulders at night to change diapers, my shoulder and right arm would throb in pain. I became depressed, crying for reasons I normally would not cry over. So today I saw a new rheumatologist, not because I was unhappy with my old one, but because we recently relocated to a new city, new job with new health insurance. She asked me if I knew that I couldn’t take Enbrel while breastfeeding. I told her my previous rheumatologist, told me I would be able to take Enbrel after I delivered. It seemed like this new rheumatologist was so sure of herself, even saying that her other breastfeeding patients were advised to stop before going on biologics. I said, OK I understand, I just really need to get this swelling under control. On the inside I was slightly shocked, I mean, I’ve done the research, I am a PhD student with access to PubMed, clearly this rheumatologist must just have a really strong opinion, which I get. “Do no harm” is an ethical belief I stand for. But not when you don’t even consider patient autonomy? Anyway, she repeated herself “you’ll need to stop breastfeeding and start giving your son formula, four months is a great effort”. I nodded, trying to be polite, then I didn’t know the thought would just make me so sad, I started crying. I didn’t know remembering how much breastfeeding hurt the first month, through all that pain, how close I was to quitting early on and how much I enjoy it now - would make me very sad. Lol, anyway I go home with a Rx for 10 mg prednisone, which she plans to double if my symptoms do not get better by Friday.

A few hours later, I get this message from my new rheumy, she says she found some interesting data, apparently Enbrel transfers into breastmilk minimally and that biologically, it will not be absorbed through baby’s stomach. Once my insurance approves, I should be able to start taking it as soon as possible.

I’m wondering, would you stay with this rheumatologist? Any other advice is welcome.

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Hey welcome!

You got her to doubt herself, do more research and even admit she was wrong… every doctor can make mistakes the best once admit they do…

I hate injecting myself too… i hate injections when other people do it too… i don’t mind them taking blood or whatever with the biggest needle as much as i hate having anything injected… and then to do it myself… i felt like i was killing myself… like they wanted me to inject air into a vein… so i did the spacing too (well i honestly forgot them because of the stress they caused)

I hope the Prednisone will do wonders for you! Which I’m sure it will. And that the insurance company will be fast in approving your enbrel.

Hi Cynthia! Thank you for the kind words :slight_smile: it’s 4 am and I think the prednisone has decreased some swelling already, although still very painful I can’t complain. And yes, I definitely liked the fact that my new rheumy eventually addressed my concern. Maybe it’s also because I just miss my old rheumatologist… she was just so comforting and considerate :frowning: she even gave me time to think about which medications to take after she broke the news of my diagnosis to me. To be honest, when the new rheumy told me I could start taking Enbrel pretty soon, I started having ptsd (lol). All I can think about is sitting in my room with my medication for an hour TRYING to administer it myself. At the same time I’ve never looked forward to finally stabbing myself again >_<

I’m actually impressed that she did the research on Enbrel and got back to you. The argument against Enbrel when breastfeeding is silly, isn’t it? Think about it. . . . . if it could be absorbed by taking it orally, wouldn’t we all be doing it that way? The proteins get broken down in the stomach, therefore it has to be injected. Any that would be in your milk and transferred to the baby would be broken down in the baby’s belly.

That’s not to say that there wouldn’t be any in your breastmilk, but that it wouldn’t be bio-available due to the protein size.

In case you’re wondering, I was not prescribed a biologic right away, and I wasn’t diagnosed until after my second child was close to a year old. I’m also a La Leche League leader, and am getting my information from Medications and Mother’s Milk, by Thomas Hale.

I do know someone who used Humira while breastfeeding due to Crohn’s disease. I can’t remember if she used it while pregnant.

Hi Zaki.

I’m going to add a different point of view here. I know this can be a controversial subject and I don’t want to stir up controversy, just to speak from the heart with a different opinion.

I breastfed my kids and I know how good it can be for the baby, for bonding and in some respects it’s convenient too. However the biggest and most important reason I had for breastfeeding my babies was that it seemed to me to be the best option at the time for them. I haven’t read any evidence either way about breastfeeding while on biologics but I honestly think that if I was a young mum now I would not go down that route. Even if I were in that situation myself I don’t think I’d do the research, I’d just be concerned about any risk, however small, which might negate the ‘best for baby’ case even a fraction.

I wish you and your littl’un all the best, whatever you decide. Please do not be offended, this is just another view for you to take a look at.

Hi Stoney, I’m actually very happy to see that you are a La Leche League leader! And yes, that was my initial reaction, I’m actually more worried about me taking Prednisone right now and still breastfeeding. If you were dx later, did you experience any symptoms of PsA while you were breastfeeding?

Hi Sybil, thank you for the insight and for bringing it up! And no I am not offended, it’s also my mom’s point of view as well so it’s nice to hear it outside of my family :slight_smile: And I agree, believe me I was concerned about a lot of things while I was pregnant. At that time, my rheumatologist was supportive of the idea that I stop any medication. I was really wary of a lot of things, I even stopped using chemical cleaners in my home. For me personally, the only reason I am breastfeeding is to really deliver the best nutrition with antibodies for my baby. The research for the benefits of breastfeeding is ASTOUNDING. It’s like a protective factor for many chronic diseases (considering I have inflammatory issues, with a history of asthma, family history of hypertension and colon cancer) - therefore breastfeeding is the least I could do for him :frowning: So to me personally, the benefits outweigh the very small risk of him absorbing Enbrel. Who knows I may change my mind in a while :slight_smile:

Well I hate to wade into this one. But the whole pregnancy, delivery, nursing thing is fraught with difficulties for PsA patients because of widely varying hormone levels. Its not unusual to have a flare following delivery or the first weeks following because of the high level of the proinflammatory hormone prolactin which is necessary to nurse. High levels of prolactin remain throughout nursing. Its a tough choice for moms

FWIW the while process has been pretty thoroughly studied. Of women who had an increase in symptoms or even the development of the disease itself following pregnancy, Eighty-one percent had breast-fed. This was higher than the breast-feeding prevalence of 50% in the (adjusted odds ratio [OR] 5.4, 95% confidence interval 2.5-11.4). There was a smaller increased risk of breast-feeding after a second pregnancy in the arthritis cases (OR 2.0) and no increase after a third pregnancy (OR 0.6). The increase in risk was greatest in those cases whose disease was erosive and who were rheumatoid factor positive.

If you are committed to nursing, I might suggest you visit with your OB. One of the other hormones produced by nursing mothers is Oxytocin, which is thought to mitigate inflammation. There are oytocin supplements available but they are usually NOT the same thing.

Stoney can prolly advise you as to anti-inflammatory meds that are safe (THERE AREN’T MANY) and can be used insignificant quantities to make a dent in things. It takes a while for Enbrel to start working.

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I guess, joining up some dots, I sometimes hope that my kids may have better behaved immune systems than I do thanks to having been breastfed for quite a while.

I like your thinking Zaki, particularly because it’s all about your son.

I started out on NSAIDs and plaquenil while I was nursing, before my son turned a year. He nursed for a long time, so other disease modifying meds had to wait.

Oh, Zaki, how sweet…I’m so glad you got the go-ahead to continue nursing. I nursed 3 of our 4 kids (long story why I didn’t nurse baby #3), and now I have daughters who’ve nursed their babies. When you said:

I could just feel your sadness. There’s such a bond and for someone to say you need to stop breastfeeding is just heartbreaking. And, really, it’s not much different than feeding formula, but I think there’s a special feeling being able to actually supply your baby’s nourishment that’s so healthy for them. It’s motherliness to an extreme and at the time you’re nursing it gives so much satisfaction. With that being said, I can also speak for formula feeding and not nursing our 3rd child. She ended up as nice and healthy as the other 3. It’s a very personal thing. I’m glad it turned out that you can continue nursing, though! :slight_smile:
My daughter who has a two-month old baby now just stopped nursing but had pumped enough to feed one bottle of breast milk per day for a few months. Her doctor friend told her that one a day is all that’s necessary for the health reasons of nursing! If that’s true, then pumping extra milk and freezing for future use is a good option, too.
Enbrel is a godsend to a lot of us and I hope it works well for you.
I have 2 nurse daughters and one of them (35, pregnant with her 5th child now) has been having some numbness in her fingers on both hands and painful upper arms–to the point where she doesn’t want to use her arms and she ices them. Of course, I’m worried sick about her because this has been happening off and on for several years–it started 5 years ago after she had her 4th baby. She’s also recently had extreme itching and some flaky skin on her knees and a few other spots.My kids are doomed because there’s psoriasis on both sides of the family and it’s actually surprising nobody in my generation on my side of the family has had it but me!
I can’t even think about any of my kids or grandkids being sick…it’s too sad. All you want to do is protect them from everything bad–and PsA, although not the worst thing imaginable, can be awful and I wouldn’t wish it on anyone.
Hugs to you, Zaki, and hoping you feel well enough to enjoy all the peaceful moments with that new little sweetheart.
Oh, and would the sure-click auto-injectors be easier for you?

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This is really interesting info! I had no idea prolactin was pro-inflammatory. It does makes sense that flare ups happen after delivery and increased with breast feeding cases.

Hi Sybil, I have no doubt you’ve transferred over some worth while immunities to your children! I’m just happy to have been able to breastfeed for the first few months :slight_smile:

I’m the same right now, taking Ibuprofen - my Enbrel has been approved (yay!) but I’m considering weaning him at 6 months (which is 4 weeks from now) so I can start the medication. I’m still on the fence though :confused:

That’s actually a great idea! I’m actually considering bottle-feeding him breast milk after he’s 6 months. It’s not exactly because of the medication, its more because I think I’m ready to wean him so that I can rest more at night and have my mom help with him 2-3 days a week. And yes, Enbrel worked in a matter of days for me and the auto-injector was what I used!

I’m sorry to hear about your daughter :pensive:, it’s definitely a different feeling to understand what a loved one is going through. Thank you for sharing and the kind words <3 Your experience with PsA is valuable to us new ones struggling with it!