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Living with Psoriatic Arthritis (PsA)

Flare up - systemic issues

#1

I’ve had quite a few flare ups over the years. I was diagnosed almost 12 years ago, and have probably had this since I was around twenty years old (I’m 47 now).

The last few weeks have been really busy, and I could actually feel the start of this happening. I’ve had a few extra students that I was trying to fit in for tutoring, plus some other extra commitments including pet care. I was also somehow in charge of running an event at my Temple. And I’ve been dealing with my sister being in and out of the hospital, even though she doesn’t live near me. To top it all off I had a trip to Maryland planned, to help out with a conference as a part of Ben’s Friends.

I’ve been dealing with pericarditis and/or pleuritis for the past 15 months. It had been quiet for a few months so I was starting to feel like maybe I had gotten ahead of it. I had even started to wean off of the colchicine that I am taking for it. I started feeling it getting worse about a week before the conference, so I immediately upped my anti-inflammatory as was the plan. But it was just too late. While I was gone the symptoms continued to get worse. I will not admit to drinking more than usual while I was away.

So first off, it was really great meeting @tntlamb and @Seenie while I was there, and spending three days with them. I also got to meet @Frances from this community, as well as other members of other Ben’s Friends communities who are from the area. Oh, and I got to meet Ben Muñoz, the founder of Ben’s Friends!

We were all tiring ourselves out with being up early, staying up too late, and not resting at all. I came home on Saturday, and it took me all day to travel 5 hours because of a migraine and being horribly fatigued. I went to my rheumatologist yesterday, and after much discussion, and realizing that I had already started my emergency plan for dealing with this chest inflammation, I was put on steroids for 4 weeks. I’m hoping that I don’t have to consider a major medication change to get this fully under control. Meanwhile, my joints are looking okay, with no significant swelling or areas that are causing me trouble. It’s so easy to forget that it really is a systemic disease.

I’m realizing that as this has become a chronic condition for me to deal with, that I need to take that much more care to overdo myself. And to not commit myself to more than I can take on. Okay, and maybe to try and let someone else handle my sister.

Maybe the only good news about being on steroids again is that it guarantees that I’ll be a solid candidate to get cataract surgery this summer. My vision is already not correctable to 20-20 any longer. 5 months ago one eye was 20-30 best corrected and the other was 20-25. So I’m hoping that I’ll at least be able to get my cataracts removed out of all of this. Yes, it only took one year of a few prednisone tapers for one of the cataracts to even start.

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#2

Wow, how do you do that? Doing any one of the activities would be enough for me. It is a challenge just to take care of myself. In the past I could power through life and now not so much.

#3

The answer is clearly not very well, since I’m now in a major flare.

My schedule is typically lighter, and has plenty of time for rest or nap built in every day. I can power through a day without, but not day after day. I was actually being groomed to take over as president of my Temple a year from now. I let the current president know that it’s just not going to be feasible. It’s too much for me, on top of my family and work responsibilities.

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#4

So lovely you had such a good trip with Ben’s Friends and the conference. So sad you’re now dealing with such a major flare though. Let’s hope it starts easing for you soon.

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#5

Well, it is awesome that you able to do what you did. I am impressed.

#6

Stoney, it was so wonderful to meet you, and you deserve the Ben’s Friends Meritorious Service medal for what you did last week. My goodness, woman, you are a trooper! And now, look where it got you …

I think our expedition to the World Orphan Diseases Congress in DC was a success, in no small part because of your help. I’m just sorry that you’re having to pick up the pieces now.

I came home with fatigue and a nasty cold, you had a flare, and I believe that @tntlamb had both. But what a time we had! And we’ll recover.

So glad to have met you in person!

S

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#7

Sometimes it’s worth it. And I would say that it was. Just need to recover for the next month now

#8

Frustratingly enough, I’m still dealing with this. I got down to 5mg of prednisone a day and had to call my doctor. My symptoms were almost as bad as they had been. I don’t know if it’s just taking longer for the increased colchicine to fully kick in, or if the prednisone dose wasn’t high enough to knock it back hard. Either way, I’m back on 20mg a day, decreasing by 5mg a week. I’m not too happy about being on so much prednisone, but it’s getting me back to where I can semi function. Not being able to breathe without pain isn’t much fun after all. I’m able to exercise very lightly. Think slow walk. Hoping to some day be able to do more again.

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#9

Ugh Stoney, that must be so frustrating. I would feel like it was never-ending! I do hope things start to head towards “normal” for you again one day soon.

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