Newly diagnosed this year after about two years of random symptoms. My PCP actually diagnosed me then sent me to rheumatology for confirmation. It was confirmed. My rheum said, well it’s not typical PSA but it is psoriatic arthritis. My labs are pretty much ok but the bone pain and joint stiffness are terrible. I have only two lesions of psoriasis at this point but have had the one area on my foot for over 5 years without improvement. My largest lesion is on the left inner sole of my foot the other are in both my ears. The foot hurts like hell, tears and bleeds a lot because of its location as well.
I’m a pediatric nurse practitioner and am on my feet all day. My foot pain is the most difficult to deal with on a daily basis. My pinky toes on both feet now have sausage appearances (which is new and I took pix for my doc). My other pain points are feet, hands, right hip and some just general stiffness in the knees and ankles.
Even though I’m in the medical profession, we don’t get a lot of PSA in pediatrics so my knowledge base isn’t great…though it is improving greatly, as I’m sure anyone with a chronic disease would improve. I also have celiac disease just for fun and giggles.
Was going to start MTX and had way wacky liver enzymes (into the 600’s which is grossly abnormal) and ended up getting a liver biopsy. Went through a ton of testing to find that it was probably elevated due to psoriasis and celiac disease. Because of the elevated enzymes, I can’t do MTX and they just put me on humira. Started on Saturday with first injection. My labs bedsides the LFT’s are fairly normal so I just have to gauge effectiveness with my symptom control, said my rheumy.
Hey there, Colin! I’m sure you don’t get a lot of PsA in pediatrics, but we do have some young members here. One is six (her Mom is the member). We also have a fifteen year old and an eighteen year old.
The best way to improve your PsA knowledge base is to get the book that I recommend under MEMBER SERVICES > BOOK REVIEWS, “Psoriatic Arthritis – The Facts” by Gladman and Chandran. It’s written for a lay audience, but has enough technical detail that my GP found it very helpful. (I gifted her with a copy – kind of cheeky of me, wouldn’t you say?) It’s on Amazon – the e-book is a bargain.
Sounds like your rheumie is cutting to the chase with a biologic. Right on. Early and aggressive treatment gives you the best chance at avoiding permanent damage. And the BRMs are the meds with the best track record of success. But you probably already know that.
So I just got back from my dermatologist appt. she found two new lesions, one I just thought was redness. She said, no that’s psoriasis. Well poop. One thing she mentioned is that when starting Humira, especially for psoriasis or arthritis is that it should be dosed as a loading dose. Two injections the first day, one weekly then for two weeks. It helps clear up the lesions faster and gets you to a therapeutic level faster then every two week dosing. Didn’t know this and wasn’t treated like this by my rheumy. So she gave me another Humira injection to do weekly for two weeks. Just thought you should know the new recommendations by Humira (this was from her drug rep). Does anyone else do Humira this way?
Was able to actually walk on my feet for the first time about 4 days after my first dose in the morning. My symptoms are mainly in my feet and hands with the occasional knee, hip, elbow and back issues as well. Saturday back to painful feet. She suggested maybe going to weekly injections and that’s when the whole loading dose came up.
Additionally anyone with insomnia with Humira or loss of appetite? I’ve had both for the past week.
Most any of the biologics when used for psoriasis have a different dosing schedule than for just the PsA. This has in the past been to avoid new lesions. I'm not sure if this is new for Humira or not. Enbrel for example is twice a week for 3 months. I don't want to PO my rheumy who know is a member here but frankly I think the Dermies sometimes do a MUCH better job of managing meds. At least they know prednisone makes the disease (psoriasis) worse if used as a taper or long term........
I've not heard of Humira causing insomnia or loss of appetite. Occasionally a few nights or so of a low a dose (25mg give or take) of amytriptyline sort of resets everything.
Welcome! I had no professional experience with psoriatic arthritis before actually having it myself, so you aren't alone there. Being on your feet all day is the pits, but hopefully, you will see pretty fast relief from the Humira, especially with the loading doses. Your sausage toes are a "classic" symptom, by the way. Welcome to the club...you are now, "Typical"!
Seriously, the Gladman book is really a great reference. We also have some good information under the "Newbies" section of the site. It's best to get a good overview, but don't get too bogged down in outcomes or details yet. Everyone with PsA is like a snowflake - we are all very different. Most folks do really well with treatment, and it sounds like you are already feeling a little relief. I hope that continues for you, and that you get a lot of pain free days out of Humira. It was may wonder drug for a while!
Thanks Grumpy Cat! Love your handle too (grumpycat). I’m hoping the loading doses help. My fatigue is a lot better for sure already. Now if I could just get some sleep! I like being atypical most days anyway the toes just threw that all off for me.
I think the derms do better too. She was all about me starting humira long before my rheumy. Now I have to decide who does that medication management. Any advice on that one? The rheumy started by the derm changed things. I see derm again in 2 months and rheumy in 1 month. Anyway, thanks for the support. I’m hoping to feel better soon and get back to a relatively normal existence.
As far as med management, I would pick whoever listens the best. If your derm is comfortable with what she is doing, then stick with her. If she gets in over your head, then see the rheum. For the most part, the biggest concern is stepping on toes. You definitely want the rheumatologist in your court when you need imaging or other diagnostics. Hopefully, the rheum simply sees it as two practitioners trying to manage different sets of symptoms.