Flares

General
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I'm a very, very slow learner. Is this a symptom of PsA? I wish I could blame it on the disease but I'd never get away with that - there are some very sharp brains around here. Anyway, not saying I'm thick ... I've thought my way through, round and over all sorts of sticky situations. I just take my time and then some!

A case in point is flares. Flare-ups. I have clocked that this is not a precise term. It's just a word we use when our symptoms worsen. That's right isn't it? But just think about that word .... the minute I hear it I imagine flames ..... all was calm, then Whoosh!! Like a forest fire, out of control, destroying everything in its path.

Given these rather dramatic associations and of course the fact that actual PsA flares can be vicious, I fear the worst almost every time my symptoms worsen. It's going to be a disaster I know, it's going to be an inferno. But the thing is, these days it never is.

I've been through the fire. And those of you who still are, my heart goes out to you. But for some years now the words flare and flare-up do not apply to me and I should not use them. They are way too inflammatory!

I guess the worst of my inflammation is under control. So what does happen when my disease makes its presence felt that bit more? I'm thinking more in terms of the opposite of flares .....damp, grey, heavy, miserable, sodden ..... more like summer gone wrong than anything. Where I live, I should know by now that the weather can change in an instant. But it is still a temperate climate.

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I get both. I usually refer to that increase of symptoms as an uptick. In other words, I may not be able to identify the day that it started, because it was slower, but I realize that I’m in a bad spot. This is different than the wake up and can’t move, which is what I do consider a bad flare.

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You are right of course, I was being a bit 'either / or' whereas any combination of events is possible. I like that you make your own categories .... that's how it's got to be I think. (I don't like that you get bad flares, mind!)

Stoney said:

I get both. I usually refer to that increase of symptoms as an uptick. In other words, I may not be able to identify the day that it started, because it was slower, but I realize that I'm in a bad spot. This is different than the wake up and can't move, which is what I do consider a bad flare.
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I'm with you, Sybil. I guess since I've been on Enbrel, my flares aren't really flares. They're more like little bumps in the road. Although, some of the pain I've had in my back and feet feel like flares--I could even describe them as explosions! But these explosions are, unfortunately, the end result of not getting aggressive treatment for my PsA soon enough. My PsA symptoms are 85% under control at this time. Lucky for me, my back and feet are doing fairly well, considering what's wrong with them.

So, no real flares for me. Another thing--before my PsA was treated with Enbrel, Idk if I had flares or just a constant painful and sick body, with an occasional "flair" with a good day, or at least, a good few hours! (I'd always mark "feel good day" on my calendar when it happened, but it was very seldom!)

Unpredictable, like the weather where you live, Sybil (and also here in MN) --that's PsA for me, too!

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It's just that word 'flare'. I think I'm a bit literal-minded and it suggests the kind of sudden crisis I don't have these days. But sometimes my disease worsens or gets more complicated. I don't really want a whole elaborate vocabulary for PsA symptoms but 'flare' is used to cover a multitude of sins - too many to be helpful sometimes. I think Stoney's on the money with her 'uptick'. But there again my rheumy would recognise 'flare', 'uptick' I'd have to explain to him. I also have trouble not describing some things that happen in the kind of language one probably should not use in the presence of a respected medical professional.

Grandma J said:

I'm with you, Sybil. I guess since I've been on Enbrel, my flares aren't really flares. They're more like little bumps in the road. Although, some of the pain I've had in my back and feet feel like flares--I could even describe them as explosions! But these explosions are, unfortunately, the end result of not getting aggressive treatment for my PsA soon enough. My PsA symptoms are 85% under control at this time. Lucky for me, my back and feet are doing fairly well, considering what's wrong with them.

So, no real flares for me. Another thing--before my PsA was treated with Enbrel, Idk if I had flares or just a constant painful and sick body, with an occasional "flair" with a good day, or at least, a good few hours! (I'd always mark "feel good day" on my calendar when it happened, but it was very seldom!)

Unpredictable, like the weather where you live, Sybil (and also here in MN) --that's PsA for me, too!

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I tend towards minor flare (general increase in symptom or symptoms that is manageable and lasts a short time) or major flare (something that needs a call to the doctor or fairly immediate medical treatment ... like when I couldn't lift my arms, or more recently when my back pain increased dramatically and affected my ability to walk, sleep and generally function).

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Hey nym. May all your flares be minor from here on, or preferably non-existent, you deserve a break! I guess when you're seriously affected by increased disease activity, how it's described is not exactly the issue!

nym said:

I tend towards minor flare (general increase in symptom or symptoms that is manageable and lasts a short time) or major flare (something that needs a call to the doctor or fairly immediate medical treatment ... like when I couldn't lift my arms, or more recently when my back pain increased dramatically and affected my ability to walk, sleep and generally function).

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There is an amazing amount to learn from “old” conversations. I was pondering while hurting last night on the term, “flare”. There are some good explanations in this 5 year old post. I don’t seem to have many days or even weeks of intense pain but I do get very random spikes or…flares. Yesterday I felt pretty decent and did about an hour and a half of physical work…hauling and splitting firewood type of thing. After resting for a few hours, I had a steadily increasing sinking into whole body pain feeling. It was like a real bad flue…all joints ached something terrible, that deep fatigue and all I could do is curl up with a heating pad and wait for sleep to distract me. It was just awful. But this morning most of that has backed off and I feel back to my “normal” soreness. That’s how most of my flares are but not usually to the extent of last night.
Is this a typical occurrence in which everything aches all at once for short bursts?
It is an education in itself to read of some of you “oldies” walk with this. Thanks for sticking around!

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I like that “normal soreness.” That pretty much describes it. I have bad l flares occasionally and my entire body hurts. Those are the days that I have to struggle to get out of bed and go and sent in front of the computer and work. Since I am back on Humira, the whole body flares are becoming less frequent. But, I have what I call flare ups of different body parts.

I will be going along fine for a week or so, then suddenly, I may feel my hands and wrists began to change. Within a day they can be hard to use and really hurt. Other times, it may be both hips, or just both knees. When this happens I wait to see if it is going to be my entire body.

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Yes, feeling of intense pain , sometimes dull and warm,. in different body parts, sudden inability to either use one’'s hands or feet or legs. cognitive impairment and fatigue, waves.
Am experimenting w boron capsules as an added integrative measure on top of meds, hoping it is not simply a pious illusion, judging by current status, but man lives by hopes and dreams as well , possibly

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Amos, I tend to think of the type of flare you are describing as a mild overdo flare (not really a disease flare). As long as the activity is “worth it”, I tolerate them, and actually schedule them.

Yep, you read that right, I schedule them - as in there are activities I love that I know will often cause these, like my horseriding, and I’ve found for me that optimum is to do it once a week, late in the afternoon, with dinner already made and just to be heated up, then to bed early.

More than around once a week knocks me about too much, though I slowly build tolerance to the activity over many months or years - like I’ve been riding for about 40 mins a week for around 5 years now, and the other day I managed to ride for around 4.5 hours on a massive trail ride. It took nearly a day to recover, but 5 years ago I just would not have been able to do it at all, and even 2 years ago it would have wrecked me for a week.

Exercise actually causes short term inflammation, and it seems that for many of us, the PSA amplifies that.

I also get underlying disease flares. These, for me, usually last weeks or months, come with all the other symptoms (like the eye inflammation for example), and often mean my meds are not working well enough or starting to fail.

Just the last few weeks I’ve got mild carpal tunnel (which is new for me), and now my elbows and shoulders have started to ache, and today my eye started up, so I’d say that’s an underlying disease flare settling in. That progressive adding of symptoms for me usually heralds something that’s going to stick around for a while. I hope I’m wrong this time of course!

Now I’m going to take your advice and go search on carpal tunnel :grin:

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Haha! “Scheduled Flares”. A new term for the PsA glossary. Thing is, it wouldn’t be an “overdo flare” if I didn’t have the disease, so while self induced, it is a disease flare…but predictable! We are a confusing lot! That’s really great that you can continue the love of horse riding, we gave up riding about 10 years ago and miss most aspects of it. While into the exercise, the pain is very tolerable and sometimes almost gone. It’s the “after roar” that is crippling and discouraging. Exercise and yard work etc feels good because we feel like something is being accomplished and being physically productive is good for ones mental health. But I am really frustrated by the reality of having to limit what I do even when feeling good doing it…hope that makes sense! I will keep scheduling my pain appointments as long as possible.

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can someone please help me with words how to communicate with doctors about the whole body flare that has now moved me to a walker, bed rails to help get out of bed, splints on hands , etc, I have switched to a new biologic, Humaria, with five shots so far and I have went from the last week of doing water aerobics, some shopping and cleaning to now using a walker to ger some movement in etc. Could getting the flu shot cause this as well triggering two antibody reactions. Took the shot October 4. Prednisone has been started but only 10 mg a day and that is not helping one bit.
Husband is afraid to leave me alone in case I fall.

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I communicate better via email when I’m really unwell.

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List off what’s going on to your doctor including functional limitations. Also, ten mg of prednisone might be okay, but you may have done better starting with a higher dose to hit it harder. Can’t hurt to ask. It does take time for a new biologic to cook in, but there’s no reason why you have to be quite so miserable n the mean time

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yes i sent an email at 12:40 cst with everything that is going on. i asked to move up dosage as well. i also asked if he would like to do bloodwork, see me or anything to see how i have down spiraled so quickly,
is it normal for one to have taken only 5 shots of humara and this happen? is this normal? this is my first switch of biologics.

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I switched from my first biologic which lasted around 7 years to yumira. I think three years ago now. Honestly it seems to work but it’s not really wowing me. My only consolation is that I’m not an awful shape. I’m just not in great shape.

When I started the humira I was in rough shape. I had had COVID for the first time around 4 months prior to that and had been on prednisone for quite a few months at that point because post covid I was just a mess

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i just got back from rheumy and is switching me to skyrinzi. said my body is not tolerating the humara like he hoped. meanwhile keeping on predisone for a little
it then going to add arava with the new medicine.

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Finding the right meds seems like playing Wheel of Fortune. Just give that wheel a spin and see where it lands. I might make one with all of the PsA biologics and bio-similars to land on. Might become a new T.V. show or at least a board game. Hummm…maybe PsA “SORRY” would be better?

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Until the science works out which med suit which patient finding the right med is a lottery. The scientists are making huge strides with tailoring cancer meds to patients coherently and that will eventually filter down to us. But until then we run the lottery every time we have to change meds. Sadly.