Pso, PsA and Pregnancy - My Experience

Hello again!

Today I want to talk about pregnancy when you have a chronic health condition.
**There will be TMI things, because child birth!**

There is a lot (more) to consider when you choose to procreate, with any long term illness. I know I had a lot of things going through my head when we were deciding if we should start a family.

I was, and still am terrified that my kids might have to go through what I did. It is my greatest fear! I am worried as they get older they will get picked on. I worry that other mums who don't understand wont want to let their kids come to play. I also worry that i'm going to wind up in a wheelchair, or be otherwise incapable of playing with them and teaching them things as they grow up. These things terrify me! I've always wanted to be a mum, ever since I was little. Never getting to experience our amazing little boy? Never getting to see Jason be the amazing dad he is? It just was never an option for us. I wouldn't change a thing!

When I was on MTX, I wasn't really thinking babies - I was only 11. Dr Rheum never told me no babies, again, because I was 11. I wasn't on any birth control and no great concerns were noted on that front. Its only now as I was reading up on the facts for MTX that along with being a chemo drug, it is also an abortifacient, used for medical abortions. This pretty much rules out pregnancy on MTX. I also found myself wondering if this is why it took us so long to get pregnant. More on that in a moment.

I was 19 ish when my doctors told me that if I wanted to start a family, sooner was going to be better than later. My hips were already in bad shape, as was my pelvis, so the added stresses of pregnancy were going to be an issue. We tried for a year, unsuccessfully before deciding that my best course of action was going to be going on Humira, getting under control, and then trying again. Dr Derm told me if I wanted to get pregnant I needed to be off Humira for 3 months before trying or birth defects, miscarriages, or a need to abort would be a concern. So that's what we did. And in that three months, everything started to come back, not severely, but enough to notice. That built up this enormous pressure because we knew we only had so long before things would get worse, and I'd need to go back on. That pressure was so intense I couldn't fall pregnant because I was so stressed. This went on for about 18 months, without success, and we decided to go to a fertility specialist.

We sat down, and did the tests, and when I mentioned that I was being treated with Humira, and had stress in the gaps, he looked at me funny and said, "Oh, Humira is relatively safe, you should be fine to have it at least into the second trimester!" I was furious! I'd put my body through so much pain, stress and anguish over not getting pregnant over the last few years, when I didn't need to at all! I called Dr Derm and asked him, and got a rosey "Oh, yeah that's fine, Second trimester sounds about right!" like.. WHAT!

Fertility doctor had treated several patients who were being treated with Humira without concerns, but called to speak with a doctor who specialized in pharmaceuticals used during pregnancy. They were both equally annoyed at the advice I had been given.

I was told to go ahead with Humira, and to see how I went. I was pregnant within 30 days.

I was sent for a scan pretty much as soon as I got a positive, as one risk of Humira is a higher chance of Ectopic pregnancy. I was cleared for that, there was a little blob in a little sack, and it was where it belonged. Everything on track!

We went along from there, had another scan at 12 weeks, everything normal, no concerns.

I was sent to the High Risk clinics fortnightly, even though i'd had no issues. Chronic health conditions will get you that treatment. At my first appointment I went in armed with questions. What to expect from pregnancy and my joints, what to expect for my birth options, what were going to be my biggest issues and how would Humira be dealt with. The first doctor looked at me like I grew three heads, and promptly forwarded me to another doctor. The new doctor? She. Was. Brilliant. Answered every question, knew of and had other patients on Humira and the rules regarding it, had the research to back it up, and an answer for every question! 

I asked her about the fabled "pregnancy cure" for Psoriasis and PsA - I had been told many times that pregnancy would put my skin into remission. When I asked Dr Awesome about that she said that it works in thirds. 1/3 of people improve, 1/3 of people stay the same, and 1/3 of people get worse. I was lucky to stay the same, but that may have been in part thanks to the Humira. She also told me that it would be better for me to remain on it for the full pregnancy. I chose to use them more sparingly, with one needle every 6 weeks or so. That was all I needed to keep my joints under control, and that was all I was worried about. I had my last needle about a week before he was born.

I had been told in the past that a c-section would be the most likely scenario. I had been told to expect bed rest from early on. I had been told to expect my immune system to crap out, and to be ready to effectively put myself in quarantine. I had been expecting to fight my way through and to all but give up my hope for a natural birth.

Instead, I was perfectly well aside from pretty typical morning sickness! I was wary of being around sick people - but no more than I usually was because of immune suppressants. I was told they would do everything they could to avoid a C-Section as there was a greater risk of infection that way. I never had any doctor recommended bed rest.

At about 34 weeks, I had a blood test. I was later asked if I felt any more tired than usual. I responded with i'm pregnant so, yeah. Evidently I had no iron. Like at all. Dr told me she was surprised I was able to get out of bed at all! I had an iron infusion, and while that was happening, I was hooked up to the monitor. The nurse came in and asked if I felt that? I said, felt what? I was having contractions. She looked at me and said, they are close enough that she puts money on me having the baby within a fortnight.

I was scheduled for induction two weeks before my due date as he was shaping up to be a big boy, and my pelvis had started to give me some trouble. But Grayson had other plans! I had an appt at 36 weeks with Dr Awesome where we talked about if I should have a birth plan. She said that the best plan is the one where you go with the flow, and seeing as I had already booked my induction, we had most of it already planned for us. After my appointment, I went to do a spot of shopping. While I was walking around I had this feeling like I was leaking. I kept going to the loo, finding liquid in my liner, but didn't think too much of it. I rang Jason to tell him and he suggested I pop over to the hospital to see what was going on. I was 99% sure I was just peeing a little so didn't want to, but he argued worst comes to worst, I'm just peeing myself, as preggo ladies sometimes do but better to be safe than sorry. I went in, not at all worried and they did a swab to see. 5 minutes later she pops in and says "You better go home and grab your bags, I think its time!" I rang J and said that he'd better come and get me, we had some packing to do! turns out transfusion nurse was bang on the money! She reminded me when she was on my ward. :p

Dr Awesome had put into my notes that I should be kept in a private room where possible so as to keep the risk down for infections etc, as it was smack bang in the middle of winter, and cold and flu season. We were warned that the Humira would compromise Graysons immune system too, and extra vigilance should be taken upon his arrival. We had some trouble start here as the nurses had not seen the notes. I was put in a shared room with someone who'd already had their bundle, and so, had a stream of people coming and going all day. This went on for days, while we tried to tell the docs an nurses that its in my file I need to be kept away from people. Every day the doctors would tell us, today's the day! On day 5, it was finally time!
We were whisked off to our private room finally, and in went the drip. I was in labor for 9 hours before Grayson entered the world! The birth itself was fine, without any complications,but once he was out, he had a little grunt. He was taken to NICU for some oxygen. I was so out of it that I had no idea what was going on! I sent J with Grayson, and then all the nurses and Midwives vanished and I was left in the little room all alone.





Grayson stayed in there overnight while his blood sugar was monitored. We got him back, and then it was found he was jaundiced. This meant he was under the lights every moment he wasn't eating or being changed. We were in hospital for 5 days trying to get it under control. We were released, and the next day, a nurse came to check him again. And then we were back for another three days. We told them again that we needed a private room. They assumed we were kicking up a stink, and no matter how many times we told them it was because of his compromised immunity, they just scratched their heads. They sent a NICU doctor to talk to us, and when I explained about my medications etc, she went to look them up, not believing the risk I suppose. She came back, apologized profusely and sent us right to our private room. After that the nurses and midwives treated us like royalty. We were pretty pissed.


I breast fed him with the occasional formula top up, until he was 8 weeks, when my joints started to really give me trouble, and I had to have an injection. My supply vanished overnight, and I mean gone. No engorging, no leaking, nothing. After that, he was on full formula, and his skin became a little rashy, then alot rashy. He had eczema on his arms, legs, and face. We went to the doctor and got a cream, and like magic it was gone! Since then **touch wood** he has not had another outbreak since.

He is now a healthy, very active 2 year old! He has no Psoriasis so far, and while we hope it stays that way, we atleast have the knowledge to help him get the best treatments for him.

I would love to hear your stories about your pregnancies and labor stories! You are welcome to comment them below!

Thanks So much for reading!

Millz
xx