Psoriatic Arthritis: How do you manage PA and flares?
I am a 74 year old female who has had psoriasis for over 40 years. The psoriasis was present on my scalp and ears in flares from time to time. I never experienced joint swelling and joint pain until recently. About one month ago I experienced an abrupt onset of severe joint swelling in my hands wrists, feet, and neck with severe pain. At first I suspected that it might have been related to my oncology medication, Arimedex that I began taking approximately 4 months before my sudden joint problems began. Testing ruled out Rheumatoid Arthritis and Lupus. My oncologist did not think that the joint issues could be related to the Arimedex, however, he recommended that I suspend taking the cancer medication for 4 weeks while I was given oral Prednisone for 23 days (referred to as Pulse and taper). I am on day 22 of the Prednisone and the joint swelling and pain is no longer present. My oncologist wants me to resume the Arimedex, however, I am afraid that the severe joint pain will return. I am hopeful that additional diagnostic testing will determine the underlying cause of my joint swelling. If anyone reading this has had similar problems or any information related to my situation I would be interested in your comments. Thank you.
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@koni3739, welcome. This looks like a terrible flare. I'm sorry to hear that it has been long lasting and just not subsiding.
I moved your post to the existing discussion:
– Psoriatic Arthritis: How do you manage PA and flares? https://connect.mayoclinic.org/discussion/psoriatic-arthritis-257d5c/
I did this so that you can read through some of the recent posts and connect more easily with other members living with psoriatic arthritis, like @marylou705 @jewel8888 @jlo70 @nemo1 @smernigegm @carolee888 @wsh66 and more.
Koni, you mentioned that you might wish to consult with experts at Mayo Clinic. To request an appointment, please start here: http://mayocl.in/1mtmR63
Hi @koni3739, I’m SO sorry to hear how terrible your flare-up has been. That’s very much beyond what I’ve experienced so far with PsA, but I can tell you my journey so far, brief as it’s been in comparison to others’ journeys, and I’ll share what I’m finding makes a difference to keep my PsA more under control.
I was diagnosed in February 2020, and I only have the arthritis element, not the psoriasis (so far, anyway). I’ve gotten some pretty debilitating pain and weakness in my left foot and ankle, my left big toe is semi-rigid from the arthritis, both ankles are weak, both feet have tendinitis across the top of them, and I have sun that comes and goes in both of my biggest thumb joints. I already if a bad lower back, so I don’t know if PsA is contributing to that or not. I also struggle with pretty bad brain fog, which gets in the way of me performing at the very high level I did in the past in my job. It’s a source of great frustration and stress for me.
I started on Sulfasalazine and Otezla this year, and I find that it’s helped reduce some of the inflammation and resulting physical issues, but not enough. My doc wants me to go on Humira, but I’m truly scared to do so due to the black box warning for potential lymphoma, esp bc there’s a lot of cancer in my family history. I’ve learned that foods make a HUGE difference for me in my inflammation and in the level of physical issues I have. If I eat super clean—fish, chicken, turkey, veggies including kale, collards, and other similar leafy greens, whole grains, fruit, reduced dairy, no processed foods or grains—I feel really, really good, relatively speaking. My pain almost goes away completely, my brain is clearer, I have more energy…so many good things come of it. When I eat less well for a day or a handful of days, I can definitely feel it, and it makes my angry at myself for not following the protocol that I know works.
I also do Pilates a few times a week, which helps with my mental health, and is hopefully helping my body get stronger and my balance get better. I’m working on a lot of mental and emotional things to try to not be so hard on myself for what I’m going through and how I feel, and also for not beating myself up when I don’t eat right and end up with pain. It’s def a journey, and not an easy one.
I don’t know if any of this will be helpful to you, but if you haven’t already tried super clean eating, I’d highly recommend trying it. It makes a world of difference for me. Basically, just follow a clean Mediterranean diet and you’ll be eating right.
If nothing else, I hope my story will help you feel less alone in this difficult journey. We’re here to support each other bc no one really knows the struggles we go through. Sending lots of healing thoughts your way 🥰
Thanks for sharing! Journey is right. I haven’t messed much with diet, I did ask my rheumatologist a couple weeks ago if I would benefit from taking a probiotic, and I looked at me like I was absolutely nuts and just said why? I understand we have to do our own advocating, but I feel like gut health is a legit question! I was on the cosentyx biologic and they are now switching me to rib cow which like you i’m scared to death to take, it sounds like rat poison! all the side effects. I will look into the diet and see if that helps, or at least be more intentional. have they done any testing on you for gluten intolerance? some days I wonder if I even have the right diagnosis. it’s just absolutely insane the things my body has gone through.
I had covid over new years last year and never since i’ve been a train wreck. some tell me I have long covid – not an actual physician but I work at a college and the health science doctors and professors tell me that.
thanks again! I will take all the good vibes and advice I can get!
sorry didn’t catch all my auto correcting! starting me on rinvoq.
I’ve had a long history of gut issues, and had to finally figure out the issue myself bc several docs weren’t helpful. I do have a grain/gluten some sensitivity, so I have to watch what and how much I eat. I stick mainly to whole and multi grains, esp Ezekiel bread. I also saw a functional medicine practitioner about 4 years or so ago and she was incredible, healed 20 years of stomach issues that 7 gastro docs couldn’t. I was like a shell of a person due to the stomach issues and related chronic fatigue, pain, etc. I barely felt like I could survive each day.
My rheumatologist is the one who told me to eat super clean/Mediterranean diet, AND she put me on a probiotic bc ALL of our health and immunity comes from our gut. Research it and you’ll see the science behind that. I spent 20+ years miserable and only partly functional bc of the stomach issues, and also had adult acne bc of the gluten/grain se sensitivity, among other things. It’s all linked. Take a good quality probiotic and omega 3 fish oil pills (my doc also has me in those bc they help with inflammation and joints). If your doc is responding the way you describe, then maybe it’s time for a new doctor. He sounds behind the times and if nothing else, not respectful of your situation and what you may be learning “in the wild.” Gut health is SO vital to our overall health. I’m living proof of it.
Try to use some over the counter Benadryl to reduce the itching. Remember you are not alone in this battle, prayer always makes me feel better mentally. Biologic's are good when they are affective, you may have an allergy to the biologic. Try soaking in the tub and pour in a whole box of baking soda. Lastly, don't give up! If hope is all you have right now, hang on to it as tightly as you are able.
Any recent info on psoriatic arthritis??