Am I in denial about my disease level, or am I actually doing pretty good?

General
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Ok, so Corrie replied to my other post: "Biologics are certainly showing the most promise in PsA treatment. One must weigh the risks of serious side effects seriously against the risks of not taking them."

That leads to my next question, how bad can it get? I had a wham-bang start to this disease. For nearly a year it ran rampant all over my body, but thankfully not at the same time. It started in my foot. It swelled huge and took nearly a year for it to calm down. In the meantime, every day it was some new pain in some new location. I felt like a freakin' hypochondriac. Pains just kept popping up all over. When people would ask how I was I would just say "fine."

Then over the next several years, I would have flares, but things seemed to greatly slow down. And I would think, "not so bad."

However, when I look back and take stock of all the things that have happened, I think, "Wow, maybe it's worse than I thought." For instance my lungs are scarred, I have a torn rotator cuff with arthritis and bursitis in the shoulder, osteoporosis, bone edema, I lost my teeth, hypothyroid, vitiligo, deformed and some frozen fingers and toes, ddd in my neck, a few bouts of trigeminal neuralgia (not officially diagnosed, but it was like lightening in my face). But every day (except with the trigeminal neuralgia) I would get up and go to work. As hard as it was, I would do it and get through the day.

Now I'm flaring again and it's primarily my left hand but a bit in my right too. The whole left hand seems to be seizing up. In the night towards morning the pain is really bad and I think I must do something. But then I get up, go to work, pop my anti-inflammatory and get through another day.

Are there any signs to let a person know that their disease is likely to get very severe? Can it be mild for several years, then suddenly get severe?

Anybody with arthritis mutilans? Can you tell me how the course of your disease went for you? Suddenly or one or two fingers at a time? Does it seem to hit the mcp joints first?

Laura

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Laura, you know what - it sounds quite bad enough to me. Certainly severe enough to give the biologics a try.

I've not had much imaging done, feet x-rayed quite a few years back, hands - ditto, same with knees, nothing since. My knees have osteoarthritis, so they say. I had knee x-rays less than 3 months apart and the osteoarthritis occurred within that time frame while my knees were extremely swollen as they had been for a long time beforehand. So therefore the osteoarthritis was acknowledged as caused by PsA, it is seen as PsA-related damage. I also have osteoarthritis in my feet and my rheumy considers my feet to have been damaged by PsA, just going by the look of them.

So what I'm saying is that I have a lot of osteoarthritis .... not the 'pure' (if that's the word) PsA erosions. Though I wouldn't be surprised if more thorough and considered imaging would reveal a fair bit of that too. Some rheumys, thankfully not mine, see osteo and blame ageing, hereditary etc. rather than PsA. Some might therefore say that PsA hasn't done me too much harm.

But PsA is damaging, it's a nasty, insidious disease. I'm reeling off my osteo story because there are times when I tell myself that my PsA isn't too bad simply because typical PsA erosions have not been found. But then I give myself a mental kick up the backside. I've been totally messed up by this disease in the past in all sorts of ways. As, by the sounds of it, have you. Since starting biologics nothing too bad has happened. I don't fall asleep like a narcoleptic, I don't have chronic anaemia any more, I don't have raging inflammation levels, I don't feel like death warmed up. I can walk, I can even run, I can use my hands even if they do hurt.

How do we know if our disease is severe? Well, getting the opinion of a good and trusted rheumatologist is key. But also our own experience counts for a lot. You are obviously one strong woman and have been very stoical but surely enough is enough. And yes, I'm sure it can go from (apparently) mild to severe and possibly back again and all sorts of permutations in between. That's what makes it so flipping confusing!

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Laura- It sounds like you have moderate to severe disease. You are talking about quite a bit of damage over the course of just a few years. The truth is that the biologics have a really good side effect risk to benefit picture. In other words, the risk of the disease running rampant is much greater than the risk of side effects from the biologics. You have damage already, so things won't be perfect, but you won't have this massive inflammation running willy nilly through your body. Some of the other issues that you are having are not a direct result of the psoriatic arthritis, but can go along with it. For example, vitiligo is an autoimmune condition and once you have an autoimmune condition you are at risk of more autoimmune conditions.

The short answer is that if you have the damage that you are describing and the frequency of flares, it sounds like you are in denial.

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Thanks to all who have and who still might respond. Please know I appreciate you taking the time to answer and will take your input to heart. You all are so informed, helpful, honest and friendly - can't beat that! It is very comforting to know other people truly understand. ~Laura

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Laurel: Please read a thread called BIologics and Side Effects or something like that. It was started February 14 of this year by GonzoPsA. Several of us posted our stories, including stories of the damage done by waiting too long to be diagnosed and/or begin biologics.TNTLAMB, the resident researcher and all-round good egg, posted some studies to read also.

Humira gave me my life back. In my book, the benefits outweigh the risks.

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Hi, Laurel

We are pretty friendly here, and yes, there are lots of us here with a ton of experience at trying to tame this beast. What we can't do is give diagnoses or offer judgements about how bad your disease is. But you know that already.

A couple of things: with a list of damage like yours, my uneducated guess is that your disease doesn't seem to have been under good control. Personally, I wouldn't want any more items added to that list!

Your pain level is not a good indicator of disease activity or severity. There are those of us who continued to function (OK, with difficulty, but still...) while our joints were undergoing rapid destruction. We all experience, and react to, pain differently.

Yes, finger and toe joints tend to "go" first. But not always: my fingers weren't too bad and my toes were pretty much fine while the epicenter of my disease was in the joints of my mid-feet. And my mid feet are a crime scene.

Really, the only way of gauging disease severity is by asking the opinion of a rheumatologist who you trust. My first rheum twiddled my fingers and toes and pronounced my disease to be "mild", and not worth throwing a biologic at. The rest of the story is here. I'd love it if tntlamb would weigh in, but I think he's off on family business right now. He may catch up with you at some point.

I'm not sure anyone can predict with any certainty what course your disease is going to take. We hear of people who have muddled along with mild disease and all of a sudden the PsA throws everything it's got at them. And then there are the ones who have been struggling and then with no warning find themselves in calmer waters. And everything in between! How bad can it get? Well, we've heard of people waking up to find that they cannot move. Granted (and fortunately) we don't hear those stories often!

What I would want to do (and which I am doing now) is as much as I can to give me the best chance at avoiding any more joint destruction than I already have (which is plenty).

Keep the conversation going, Laurel! You can tell that we love this, can't you?

S

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Ditto what Sybil said, and from what you're telling us, to me it sounds like severe disease.....you have a LOT of terrible flares and sounds like some irreversible damage already.

Laurel, I'm pretty sure my lower back is damaged from all the years of terrible stiffness I had there. I couldn't get up from lying or sitting very easily, and I just thought it was normal pain and stiffness from getting older. It was painful to roll over in bed at night and get up in the morning, but then, like you, once I got moving I felt much better. But, my shoulders and wrists, hands, feet also were giving me pain and stiffness--tendonitis to the max. I was toughing it out, too, because I just didn't want to give in--I felt like that was giving up! And take meds--NO WAY!!!!!

My back isn't stiff anymore.....it's touchy, though.....it's damaged and that damage isn't going anywhere. But, it hasn't been stiff since I started Enbrel. I didn't want to take a biologic either. I don't like taking medicine--definitely didn't want to be dependent on it!!!!

It's worth it, though, it really is.

Today was a bad day for some weird reason.....my neck, shoulders and upper arms ache something awful....it's taking me back to similar pain I had when my PsA was it's worst--that was more of my body, but just having the pain I'm having today brought back horrible memories. I KNOW I couldn't take that kind of pain anymore. Maybe I have a bug, but it so reminds me of PsA, and I've been taking Ibuprofen all day, which I try to keep at a minimum.

I know you're wishing and hoping for some kind of remission--we all did I'm sure--and most people with the disease being treated and feeling well would still prefer being in remission so they wouldn't need to take meds. Don't wait until the damage is so far gone there's no chance of ever feeling good. A biologic won't fix what's damaged.....it'll stop the inflammation and that alone can help a great deal, but the damage can still cause some pain. Take care--I know this is a hard decision for you.....I can't say with 100% certainty that a biologic will help you, because everybody reacts differently, but a good many people are helped by the biologics; unfortunately, sometimes it takes trying a few different ones before you get one that works best for you.

Good luck, Laurel!

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Hi Laurel, Iā€™m going to respond by sharing something which has shaped my view of PsA.

Way back a few weeks after my diagnosis in 2012 I met, completely by chance, a lady who had arthritis mutilans. It was not the knarled and clawed hands or the feet that were like blocks of wood at the end of her legs, so misshapen the only shoes she could wear were made like rectangular boxes, or the powered wheelchair she used, no, it was the shape of her upper body, head and neck that shocked me. They pretty much were one ā€¦ convex, fused, twisted and misshapen. This lady wasnā€™t old, she was less than 15 years my senior (in her sixties), but her disease struck when she was a child. Long before there were any treatments besides pain relief. By the time there were DMARDS and biologics, for her, it was too late. There was nothing that could be done to slow or prevent further damage.

She was amazingly stoical about her condition, she said that these days she had very few joints that were not fused and her disease had pretty much burnt out because there wasnā€™t anywhere else for it to go. I caught sight of a tray of meds by her chair, knowing what I know now, Iā€™d wager many of these were tacking the consequences of uncontrolled disease on her internal organs too and she was just putting a brave face on it. After all, what choice did she have? Iā€™ve not seen her since that day.

Yes, she is in a very extreme minority. The vast majority would never see that level of damage whether they accepted treatment or not.

So how have I approached my own PsA and treatment? Any level of damage, once itā€™s there, isnā€™t going to go away. I'm lucky mine isn't too bad. Yes, in principal surgery can offer some solutions down the line but Iā€™m way more afraid of having surgery with general anaesthesia than I am of injecting a biologic (or taking a DMARD) to minimise ongoing inflammation, damage and disease progression. I remember the worst pain of uncontrolled PsA and as far as I can I NEVER want to experience that again, not even for an hour. I donā€™t see any purpose in me suffering unnecessarily, so come Monday, Iā€™ll be injecting my biologic, with gratitude, that the quality of life I have is possible thanks to this treatment.

As with all the challenges Iā€™ve faced in my life, and there have been a few, if I was unfortunate enough to develop any serious side-effects as a result of the biologics (and the risks are, as I understand it, only minimally greater than the general population), I will deal with it, same as I have in the past! But what I'm not going to do is spend ā€“ waste ā€“ valuable life worrying about something which may not happen. I think Iā€™ve finally learned to live ā€œin the momentā€. And I want to be in that moment as well as I can possibly be and not catastrophizing or waiting for the inevitable and guaranteed next PsA flare.

No-one can tell you what you should or shouldn't do but we can help you reach your own decision by sharing our experiences and thought processes in these great discussions. Something I always ask myself or the people around me if they are dithering or delaying taking any action of any sort ... what are you waiting for?

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