What can expect

[JulieR2]

Hi everyone

I had PMR for 5 year and didn’t fully recover a year ago I was diagnosed with psoriatic arthritis. I now take 17.5mg of methotrexate Via injection weekly. However although this has reduced the swelling in my knee and I am marginally better, I am still stiff and feel constantly exhausted! I have been told to pace but I work in a full on job that requires me to be top of my game.

I don’t know if I am being unrealistic? Will I always be stiff and have pain in my joints. Maybe my job and the condition aren’t conducive? I did pay privately to see a second consultant as I hadn’t ever had psoriasis, my father had had a very mild patch of psoriasis and apparently this history is enough. So two consultants have confirmed the diagnosis.

So I am trying to work out if I have unrealistic expectations and if I need to consider if I can do my job. I have general stiffness when sat down for a time. I can’t easily get down into lower spaces such as my cooker or picking things up from the floor. My arms hurt when I get dressed and have to take clothes off. I just feel like I am in an endurance test and I am failing.

I have rheumatologist appointment at the start of February so am trying to gauge how I handle this and my job long term.

[kellymomcars]

Hello Julie! I was diagnosed with with PsA a little over a year ago. My right knee was the first victim, but within the year, both knees , hips, neck and hands have joined the party. I also thought I had never had psoriasis, but have since learned that I have little rough patches on my knees, elbows and fingers that probably are psoriasis. All year, the fatigue comes and goes --its so real. On the good days, Its like " okay, I can do this"! And then I have days where every joint hurt, and my muscles are so sore. The best I felt was on the biologic cimzia, but I developed horrible hives using it. I'm now on Consentyx and just added methotrexate. I hate to say it out loud, but I also am beginning to feel like "is this the best it will get?". I think this really is part of my life forever now, and the pharmaceutical company claims of possible complete remission is b*ll sh*t.

Having said that, I am encouraged by others in this forum that have found treatments that work for many years. I have found a rheumatologist that listens and wants to help me find the best combination of medicines. I have a wonderful husband that never makes me feel inadequate, and encourages me to not be hard on myself. My life has changed a lot this year. I have had to stop doing things that may cause undo stress to my joints, and to find alternative way to exercise and work. I give myself permission to rest, and am getting better at not feeling guilty. I also seek out doctors that will help me decide what treatments I will pursue, and which ones I won't - ultimately, this is my body and life, and I will not work with a doctor that doesn't respect that (just as I respect and need their knowledge).

Sorry for the rambling, but I am having one of those tough weekends myself, with a little pity party thrown in for fun! In writing this, I am reminding myself to be "bloody bold and audacious" when it comes to my body and the quality of my life. If something is not working, change it. I think this stuff is here to stay.

Isn't it nice to know that you are not alone?

[JulieR2 in reply to kellymomcars]

Thanks so much for taking the time to reply your post so helped me. Sometimes because you look ok it hard to explain how it impacts, I am grateful for what I have but the drudge feels so hard. It is good to hear from people who know what this disease does when it’s not seen , good luck with your journey! 😀