How do you adjust to having PsA?
I was diagnosed with plaque psoriasis when I was 18 and about 2 years later the PsA diagnosis came. It was monitored with methotrexate here and there, but never long term because I wasn't "bad enough" and I didnt get along with my Rhuemotoligist. Fast forward and I had one of the worst psoriasis flares with the addition of new joint pain. So my new doc suggested a biologic, cosentyx. I began
it in October, 3 weeks in I had a horrible allergic reaction and I haven't been the same since. So in January we tried Stelara, after 1 dose I had another and worse reaction. I now have the worst flare of psoriasis, a new addition of inverse psoriasis, I'm out of work on FMLA because the joint pain is so bad, I'm dealing with an allergic reaction, I have an eczema flare and the stress is just piling up now. The stress is leading to a while others list of issues going on in my head.
I am 30 years old so people look at me like I'm "being a dramatic millennial" and dont understand how I'm in pain if I look fine. The psoriasis and now eczema are located on my scalp, ears, back and under arms, so luckily I can hide it with some strategic planning. I'm back on methotrexate and will be adding xeljanz this week but I feel like it's not enough. I was running at least 5 times a week back in October and now cry if I'm on my feet or using my hands too long. I have friends telling me to try the holistic approach, or don't push myself , or a list of things that they think will help. I've always been an active person, I never didnt work because of anything (I've been in restaurants since my first job in hs) and I dont like to complain. But right now, I'm at a loss. I truly dont know what else I can to do in order to manage my day or day better, so I'm looking for any advice.
Sorry for rambling on, not many people can relate to what I'm going through so I haven't really brought up many of these concerns before. TIA for any advice.
Oh you poor women. Flares are terrible and I am so sorry you are dealing with people that do not understand or get it. I think the meds are scary as of right now I can take Tylenol or ibuprofen. But as you very well now that can change quickly. People have no clue how painful this can be. As far as herbal supplements they didn't help me. I do however see a chiropractor and that does help a lot. I thought about acupuncture, but I am still not sure how I feel on the needles. Oh and message therapy, does wonders too.
Hello,
Well, I can honestly said I know how you feel. I have had severe psoriasis for 56 years, got it at the age of 5 and I have had PsA for 35 years but didn't get the proper diagnosis until 25 years later. When you don't look sick people think you are a drama queen. I have never looked sick, even when psoriasis covered 70% of my body, I could rock it!! Don't get me wrong; I have had plenty of bad days. People don't understand when the pain is so bad you can't get out of bed or when you cry in your sleep.
I have been on a biologic for 20 years and I take pain pills too. You have to find the right combination of things that work for you. It is going to be trial and error. I have a great team of doctors that work together on my behalf. Trust me, it wasn't always like this. Are you seeing a rheumatologist? This was the doctor who help me most with my pain. My dermatologist with my skin and I have to see a pain management doctor because I develop fibromyalgia las year.
I used tea tree oil and turmeric daily. I also take epsom salt baths for pain. I'm not sure if these things will help you, but I loved them.
Get plenty of rest and don't stress. I know things will get better for you. We are here if you need us.
Take care,
Diane
