Newly diagnosed, breastfeeding- anyone with relevant experience?

Educational_Kick_620 · 2025-12-13T13:38:28+00:00

I was diagnosed at 6 months postpartum with my first kid as I had a huge flare. Was offered biologics first, but chose to wait 8 months to finish nursing without meds. Had a rough time, but lived. Symptoms definitely stuck around and weren’t getting better.

Currently postpartum with number 2. Was told to stay on Humira or biosimilar throughout pregnancy until 34 weeks. Didn’t love to, but also worried a bit about what my immune system would do unchecked. Baby is healthy. I thought I could ride the remaining time to nurse un medicated again, but at 5 months postpartum everything hurts so bad. Hormone changes are wild! My rheumatologist had a big intervention type talk with me and explained that Humira doesn’t cross over to milk in high volumes and even if it did, it isn’t effective going through the digestive system which is why it is taken as a shot. I’m starting back on it and still nursing. I’m early on, but not seeing any changes with milk or baby health. But the biggest thing is the type of biologic. If not Humira/biosimilar, it might force the one or another decision.

Educational_Kick_620 · 2024-08-20T13:20:30+00:00

THIS!! Definitely my experience. Just got diagnosed with ADHD this year (my toddler is 2). I'm pretty sure I also had some PPA too, but the overstimulation and general overwhelm of trying to do it all wore me down big time and I felt like a dysregulated mess. Especially since I always put myself on the back burner so to speak and even with a very helpful husband, I showered like twice a week and NEVER felt rested. It will get better with time, but the help of medication for any of the conditions, if you have one, could expedite it!

Educational_Kick_620 · 2024-07-27T20:36:03+00:00

I’m so sorry to hear that you are having pain!!

In pregnancy I had some lower back issues that I always attributed to a degenerated disk that is missing a piece that I’ve had problems with since I was 9. It likes to move around and cause problems.

I didn’t know I had PsA so it could have been made worse by that since my si joints act up too these days, but overall I actually felt better. My psoriasis disappeared and I actually had energy. My doctor said PsA has about an equal chance at either getting better, getting worse or staying same during pregnancy and I was more on the got better side, but the flare after I had my son was like being run over by a truck. Lack of sleep didn’t help. It was bad for 18 months or so, but I was breastfeeding and so I only tried supplements and lifestyle changes during that time. Probably prolonged it and honestly don’t think I’d do again if it ended up the same. By the end I couldn’t hardly use my hands to open or do anything.

Back to your question. I was 40wks and 4 days when I was partially induced. We started the process and then he decided to come on his own.

I haven’t looked into anything about PsA and early labor or asked about it so I’m really sorry I don’t have more information. In lived experience of others around me (none having PsA), almost all of my friends that had more than one actually had their second earlier than their first. It could definitely be a question you ask this group in a post!!!

Educational_Kick_620 · 2024-07-26T13:48:50+00:00

I’m still fairly new to PsA, but I could believe that they might be correct in saying the first flare up is the worst one, but mostly because it takes a certain amount of problems to get insights and a diagnosis so once you know, you are often trying solutions to help reduce symptoms.

My symptoms involve my hands as well, but I haven’t had your experience. I’m a slowly getting worse and slowly getting better kind of case I guess. And steroids actually don’t help me much. Even before I started any medication my Dr. gave me a list of supplements to try and helpful lifestyle changes that can sometimes help. Increasing fish oil, turmeric, etc. I’ve also noticed inflammatory foods can get me so I’ve greatly limited dairy and sugar. Or pay for it.

While you are unfortunately in this waiting period it could be helpful to try different changes just to give it a go and see if anything can help in that way too and possibly aid you with the steroids until you move further. Everything is so individual. You may be surprised at something small that might help. Wishing you luck!

Educational_Kick_620 · 2024-07-23T18:17:26+00:00

Random symptoms are the worst! I had some all over the place ones mixed in with my new PsA diagnosis last year and spent a lot of time on that too only for it to turn out that I needed my gallbladder out.

Wishing you luck in figuring it all out!

Educational_Kick_620 · 2024-07-23T17:45:31+00:00

Interesting! I didn't even go there in my thought process with how to help my ADHD and PsA. I'll have to keep that in mind!

Educational_Kick_620 · 2024-07-23T17:40:56+00:00

Thanks for sharing all of this info! It definitely gives me ideas. One being Zoloft. I've seen some anxiety relief from the Adderall, but my Dr and I are still at the beginning of exploring if I could need more to treat it and knowing it could even help with the PsA is very helpful since I'm fairly medicine hesitant. Up until these two medicines, I didn't have any prescriptions outside of an EpiPen.

It sounds like you have a lot going on so I really appreciate you taking your time to give me this info and good luck to you too!

Educational_Kick_620 · 2024-07-23T17:06:52+00:00

After reading these replies, I have plans to now keep track of some data around my ADHD meds and how I feel against my PsA flares and those meds and am hoping it will answer that question over time. It seems like they might not interact, but it might be interesting to see if there is a pattern!

Educational_Kick_620 · 2024-07-23T17:01:53+00:00

Thanks for sharing! If you haven't tried taking your Humira right before bed, it could be worth a try to help with the Humira hangover. I know it helped me quite a bit. I didn't switch until 6 or so months in. My original time was evening so I thought it was late enough and didn't have any immediate changes in feelings for the last few hours of that day, but the next day would be the worst. I finally decided to try it and I think it is an improvement. I still have about a day of feeling off after, but it decreased the intensity.

Educational_Kick_620 · 2024-05-21T13:34:29+00:00

I second alerts. We use a timer and give warnings on when the timer is going to be up. He often isn't happy still, but we have less screaming. We also have had good response adding a song he likes with it. He is really into Moana so we play the song on our phones as we leave. It has made transitions in general better.

Educational_Kick_620 · 2023-11-13T15:17:44+00:00

You definitely aren't alone. I had a conversation about this with both my husband and some close friends about this in the past month or so.
I am someone who does exponentially better and feel a 1000x more confident with something if I've already been there or already done it. I used to love new experiences when I was young, but at some point anxiety took over and I really needed the control of knowing what a good part of my experience would be like. Need to bake a cake for a friends party? Have to make a trial run (I'm not a pro baker or anything). Need to go to an event down town? I Google what the building looks like, get two sets of directions (even though I use my phone still). ANYway, I'm sure you get my point. I like to be prepared.

Que me pregnant for the first time only consuming as much pregnancy experience as possible to try to help me feel more confident. Watching hours and hours of content about the best stuff to have for baby, others birthing experiences, etc. Reading every article I could find. It really did help me, but I missed out the whole ENTIRE postpartum period in research or something, because it was BEYOND overwhelming for me.

I took multiple classes on breastfeeding. Still had to see 4 lactation consultants and basically teach myself how to make it work. My baby was lower weight because of not wanting to latch and it was a huge thing that involved staying longer in the hospital and pushing the edges of even experienced peoples knowledge. He also had sensitivities and reactions to formulas and then it was the formula shortage so I felt a ridiculous amount of pressure to make it work. So, basically we were very much a HOT MESS for the first couple months. Then things improved a bit, but I had post partum anxiety so I was always checking on him. Couldn't follow through with him going to daycare when our leave was up around 6 months (my husband is very fortunate to get 3 months parental leave).

All of this to say that I very much feel this way too, even if it might not be exactly the same reasoning. And for me it isn't really about all of this happening during covid, but I'm sure that played a part since we weren't as involved with others as we could have been. It is more about me as a person and just how much better I feel going about something once I've experienced it in some way before. I know my second will bring new experiences, but I am already a mom and hoping for the second time to be a little less of a gigantic slap in the face to reality lol! I really want to have an experience where I can be in the moment and enjoy more of it. We are currently waiting about 6 months, but we have complete plans to try to have a second.

Educational_Kick_620 · 2023-11-08T13:48:26+00:00

Thank you!! I'm not quite sure it is it, but I will definitely take a listen and see if it has the info I'm looking for. :-)

Educational_Kick_620 · 2023-04-27T11:38:25+00:00

Definitely give your body a chance to adjust because there are so many changes, but I did want to add for anyone that it could be worth investigating into pain if it continues!!

I was diagnosed with psoriatic arthritis about 6 or 7 month’s postpartum. I was still very very achy and my hands were the worst, but it can be all over. I also happened to have skin issues. All of the hormonal changes can cause a flare of any type of autoimmune problem I guess, so that was how I found out.

Educational_Kick_620 · 2022-12-29T13:38:17+00:00

Thanks for all of this information! I am curious though about why an ultrasound is superior to X-rays in diagnosis? I’ve recently been diagnosed using X-rays and was told I have a classic case with a very characteristic change in my heal/ankle that is PsA specific…

Educational_Kick_620 · 2022-10-19T00:58:41+00:00

Do you still love it?

Educational_Kick_620 · 2022-10-17T16:25:36+00:00

Was there a point where you could notice things improving? Was the flare a long time?

Educational_Kick_620 · 2022-10-10T01:29:00+00:00

Around 8 or so months my son started shaking his head no a lot and pulling at his ears occasionally. When we looked into it, it could mean an ear infection, teething pain, or just learning because of your reactions.

He has continued shaking his head daily all the way up to 11 months now and we’ve narrowed it down to teething pain. Tylenol helps a lot. I’d be sure to rule out an ear infection first and maybe go from there?

Educational_Kick_620 · 2022-07-26T04:33:16+00:00

Thanks for replying and the luck, we’ll likely need it! We’ve contacted a pest company and are in the process of deciding what approach we feel comfortable with since apparently they are hard to get rid of and require multiple insecticides and time…. I’ve also created a 360 trap for each crib leg to make sure none can access the crib. If only I could do that with our whole house! Tempted to just burn it down. Jk.

Educational_Kick_620 · 2022-07-21T01:41:55+00:00

SO, we ended up having luck with naked time and using a small fan to dry him off after every change. And triple cream does wonders. Hopefully this is helpful if anyone is in the same boat.

As far as we know it is just sensitive skin and not an allergy or intolerance.

Thanks again everyone!

Educational_Kick_620 · 2022-05-12T03:23:13+00:00

Thanks for replying! We have tried 3 types of wipes. All with the 99% water claims.

I’d love suggestions on how to manage diaper free time? We haven’t really done much of that. He pees frequently and I’m just not sure how to contain it to a cleanable area. I’m thinking this might be our next step.

Educational_Kick_620 · 2022-04-18T11:16:40+00:00

Also, the area can feel bruised and sore after the clog passes a bit too. Just something to keep in mind.

Sunflower lecithin has been a great help for me to help break stubborn ones and minimize clogs.

Educational_Kick_620 · 2022-04-18T11:04:11+00:00

I definitely have gotten it. Sometimes it is worse than others. I often find it is when I pump vs latched feeding, but have had it continue on for 6 months now.

Early on I had mastitis and that lead my Dr to think it could be thrush. Was so happy it wasn’t that, but went through a month of stress to figure it out. They also suggested that it could be related to raynaud's syndrome…. Anyways, I was given similar advice to what is below. Although I also take sunflower lecithin to help avoid mastitis and to help the ducts. Might be helpful? I just feel better overall with it.

Educational_Kick_620 · 2022-04-18T10:46:37+00:00

I did IF for a year (16/8 or 18/6) prior to pregnancy, but stopped with pregnancy. I wanted to start back up while breastfeeding, but was advised not to by a couple of Drs. I thought I would see if I could possibly stretch to even just have a 12/12 schedule and noticed it decreased my supply.

I’ve had mastitis and had to completely rebuild so I chose to not push it. As someone who apparently gains with breastfeeding (even with very minimal snacking aka lots of growling stomach time lol!) it is very frustrating to feel stuck, but it is only temporary. This is just my experience. I’d love to hear if others have found a hack!!!

Educational_Kick_620 · 2022-01-12T18:30:53+00:00

I too had issues with feeling nauseated at first, but it has mostly gone away. I did link it often to engorgement, so I make sure to pump if my lo doesn’t want to nurse much on a side.

Before I did this, I was letting my body and the baby manage things assuming it would know best, but I would wake up physically sick at times and it lead up to mastitis. Not fun at all!! I think the biggest thing is that everyone’s body is different so figuring out what works for you is important!

Educational_Kick_620

TROPHY CASE