Psoriac Arthritis, any cures??

[MSC56]

I have had Hashimoto's Thyroiditis, an auto immune disease since 1996. And since Covid 3 and a half years ago my hands have been attacked with this horrible psoriac arthritis. ANY HELP on this and yes I have tried every cream you can imagine, changed my diet so only eating meat and veg and nothing else, have seen DOCTORS and NATUROPATHS and DERMATOLOGISTS and RHEMOTOLOGISTS GALORE so any information I would be grateful, as my right hand is so inflammed and 3 of my fingers on it so do not want to lost the use of it or my left! Thanks!

[DriedSeaweed]

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My psoriasis morphed in late 2022 to include psoriatic arthritis. It doesn’t help you but when I started my leukemia treatment with BTK inhibitor Brukinsa in January of 2023 the pain vanished within 2 days and the swelling steadily went away.

You obviously wouldn’t do leukemia treatment but systemic therapy might be the way to go. Try IL-17 inhibitor? Look for clinical trials for PsA?

I didn’t realize it at first but psoriatic arthritis damage to joints is permanent. I would seek out systemic solutions. Especially if you are young. I’m in my thirties so if I manage to live long I will definitely do psoriasis treatments to prevent as much damage as possible. Right now I lucked out with this treatment that will last 15 months. Once it is over I will probably need to seek something else out.

I do also take 15mg of meloxicam everyday to cut down on inflammation. This may be frowned upon by some doctors. NSAIDs have risks… NSAIDs only helped a tiny bit before I started cancer treatment.

Even though it is agonizing try to keep moving. I found that if I did arthritis specific exercises I found on YouTube everyday it made it just a little more bearable.

Sorry to hear you are suffering with this… It sucks. If you haven’t already find the specialist in your country who is the go-to person.

I have an appointment with a PsA specialist that took me months to get in. She is probably the best in the region of the USA I live in. Hopefully she will suggest strategies once my leukemia treatment ends in 2024.

[Batty1 in reply to DriedSeaweed]

I see Dr. Orbai at John Hopkins in Maryland … who do you see?

[DriedSeaweed in reply to Batty1]

I had been seeing Dr. Joseph Merola since I go to DFCI in Boston frequently for the trial I am on. He moves to Texas later this year. I will see Dr. Orbai in 2 weeks to establish a local arthritis expert. I have seen other Rheumatologists this year but the focus was on focal myositis I would frequently get after neulasta shots to improve my neutrophil count.

[Batty1 in reply to DriedSeaweed]

Dr. Orbai is fantastic she has been my Rheumy since 2018 and the only Rheumy thats has helped me.

[DriedSeaweed in reply to Batty1]

As a new patient she is darn difficult to see. Hopefully after I see her this month if I need a follow up it won’t take half a year.

[Batty1 in reply to DriedSeaweed]

I just saw her in May was supposed to have a 6 months follow-up but couldn’t get appt until Jan 2024 …. As a new patient you may see her every 6 months without too many issues and Im sure you can do telemedicine. Im in Virginia we can’t do telemedicine because she isn’t licensed here… crazy.

[Batty1]

I have developed psoriatic arthritis after thyroidectomy for cancer … I have had psoriasis my entire life ….. psoriatic arthritis is a monster that is relentless in its pursuit to destroy your body and soul…. I inject Cosentyx every month and take Otezla twice a day to combat this monster and although Im better then I was 7 years ago Im still not 100% and suspect I never will be so I just try and deal with it ….My PSA attacks my tendons (Enthesitis) which as you can imagine just about your entire body has tendons…. Only way to describe it is achilles tendonitis x10 I spent better part of 2 years bed ridden I couldn’t walk and I still struggle some days.

Ask for a biologic drug.

[DriedSeaweed in reply to Batty1]

I regret not doing biologics earlier with psoriasis when I was younger. I thought it was too risky but now I have PsA. There is also serious cardiovascular risks with psoriasis. There is a lot we can’t feel or see going on in our bodies with this disease.

[Batty1 in reply to DriedSeaweed]

Biologics weren’t around when I was a kid doctors use to give me heavy doses of steroids “the cure for everything”. Only issue with biologics is stopping you can’t or the backlash will be insane which is exactly why I have been in this PSA nightmare for past 7 years …

I started Stelara in 2015 for Psoriasis didn’t have psoriatic arthritis although Dr. Orbai thinks I probably alway had PSA it just wasn’t horrible enough to cause me issues …. 2016 diagnosed with thyroid cancer and stopped Stelara prior to surgery (Endo and surgeon) said to stop BIG MISTAKE I developed PSA that was so bad I spent 2 years stuck in the house could hardly walk or stand saw 3 Rheumatologist before Dr. Orbai and all of them said nothing was wrong with me I just need to rest “huh” eventually found my way to Dr. Orbai because of Eye doctor who said I had Uveitis and probably Psoriatic arthritis….. its sad and my health has crumbled I use to run marathons and half marathons now I can hardly walk a mile without horrible pain.

[DriedSeaweed in reply to Batty1]

Have you looked at clinical trials? Everyone thinks of cancer when people mention them but this is how we get new drugs.

I can see why doctors like to use steroids. I was given prednisone after my last myositis incident. Solved all my problems. Let’s see what happens over the coming months…

[Batty1 in reply to DriedSeaweed]

Im enrolled in clinical studies with Dr. Orbai but nothing with medications.