Any HB-ers have psoriatic arthritis? Can you share your story of diagnosis, treatment, current day-to-day, etc?
Any HB-ers have psoriatic arthritis? Can you share your story of diagnosis, treatment, current day-to-day, etc?
pomegranate / 3032 posts
I don't have PA (yet) but I've had severe psoriasis for years now... In fall 2007, I was only 23, it started with a dry itchy scalp that felt like i was wearing a helmet. I had some patches on the back of my neck and on my hands. the first Derm I went to diagnosed me and sent me on my way with low grade topical steroids. over the course of the next 6 months it got way way worse. I lost about 1/3 of my hair, i couldnt wear jewelry, make up, clean/wash dishes, prep food and all my derm was giving me was low grade steroids, oils for my scalp and nothing was helping. I switched derms, he prescribed Humira and a high grade topical steroid (clobetesol). I started that in July 2008 and i finally started seeing improvement. but my October it stalled and the humira cost like $100/month had to be special shipped etc. In December I went to see my dermatological savior - Dr. Van Voorhees at UPenn. After a long first appointment and looking over her notes she asked me if i would give up alcohol for clear skin (again only 24 yrs old) I said yes and she prescribed Methotrexate which is a pretty nasty drug used to combat cancer and for chemical abortions. However It worked wonderfully. In about 3 months of playing with dosages my skin was 90% clear and managed with topicals. She also got me on a humira payment assistance so that only cost me $5/month. I had to do follow up bloodwork and appointments every 3-4 months and a yearly TB test. but the psoriasis was very well managed.
Spring 2012, I stopped taking the methotrexate in anticipation of TTC (you must be off the med 6 months +) In September 2012 I stopped taking the humira, we started TTC in November and got pregnant in January 2013. My skin remained manageable with just the topical (and i got the OK from both Derm and OB to continue it) I last saw my derm in December and i will be checking back with her after we're done nursing. but i must say i am incredibly happy with the treatment plan, and how it went from earth shattering (at 23) to a minor annoyance (at 30) the possibility for PA is always there but so far i havent crossed that bridge yet.
pomegranate / 3032 posts
@kjpugs: tagging you so you would see. if you have any questions I'd be happy to help
grapefruit / 4862 posts
@Chillybear: thank you!!! I'm sort of in the opposite spectrum. Have had some really severe joint pain and went to the doctor about it. Still getting testing done but she asked me to ask my birth mom since I just found her and she and her sister, mom, and grandma all have PA. Apparently it's highly genetic. I've had dry skin issues before that I thought weren't that severe (never been diagnosed with psoriasis) except some awful scaly painful skin I had behind my ears when I was pregnant. I just chalked it up to pregnancy. But I guess a small % of people get it prior to getting psoriasis. No results yet but trying to educate myself! Im ready to get a diagnosis so that I can do something and feel better!
pomegranate / 3032 posts
I've always been told that not everyone who has psoriasis gets PA but everyone who has PA also has psoriasis. But yes there is a genetic connection to both. To diagnosis psoriasis the derm did a skin scraping and looked under a microscope. Have they ruled out RA? Humira is an effective treatment in both cases though and was actually developed for RA but they found it helped with a lot of auto immune issues.
grapefruit / 4862 posts
@Chillybear: apparently 15% of PA get psoriasis after PA. That's the testing I'm getting here soon- blood testing for RA among other things.
pomegranate / 3032 posts
@kjpugs: I hope you get some answers soon and if they put you on either a biologic or systemic course of meds i'd be happy to chat about what to expect. I had a very good experience with both.
grape / 92 posts
My cousin was diagnosed in high school, but has suffered from pain from it since she was very young. She's tried a few different medications but is currently on enbrel and says it does help.
papaya / 10570 posts
@kjpugs: I have just spotted this (I was looking for something else).
My husband has PA. He has had psoriasis his whole life but his joints flared up after a period of stress. It was a long road to diagnosis. He took methotrexate, which worked but made him feel really, really sick. He's currently off meds with only very minor aches......
How did your testing go?
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