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.