Early, Aggressive Treatment

I recently had a rheumy appointment. This time I saw the biologics nurse rather than my rheumy and I admit I feared being sold short, but turns out I needn’t have worried.

Despite having had PsA quite a while and doing a fair bit of reading about it etc. there are things I struggle to get my head around. This is probably because PsA is not an academic issue to me and so, much as I might struggle to absorb some objective truths, emotions and pain can come between me and the bleeding obvious.

Okay so I am someone who was diagnosed in 2012 after at least a year of flaring and probably many years before that of apparently less troublesome PsA. I improved a bit on Mtx but didn’t escape the flare properly until starting Humira in 2014. I’d felt very ill during that long flare-up and my mobility was severely affected but subsequently I clawed my way back to a really good level of mobility and function and often feel very well.

What this post is about is how I came face to face with what I refer to as ‘the bleeding obvious’ (no blood involved - my granny bequeathed me these ridiculous phrases) and, this time, managed to take it home with me.

As is common in appointments I guess, I was wondering whether disease activity had increased and whether any of my joints were on their way to catastrophic damage. At times I have swelling that doesn’t last, some fatigue though usually not too bad, and also times when I have difficulty walking or indeed doing anything - the severity varies but usually it is just that routine activities are thoroughly miserable as opposed to impossible. There have been more frequent and slightly more severe problems over the last six months.

Somehow, the nurse managed to get through to me. I did my bit by laying everything on the line and she really listened and replied at a level that was slightly above my head at times but mostly pitched just right for me. And I think what she said amounted to this:

  • I have PsA
  • I have in the past had severe untreated PsA
  • No significant erosion of bone has yet been found but that does not mean
    that my joints are okay
  • PsA does all sorts of nasty things to joints: not only erosions, not only
    secondary OA but many types of damage to the soft & hard tissues
  • PsA has done a right number on many of my joints
  • My joints are likely to kick off and deteriorate in various ways because of
    the damage done
  • I’m always going to hurt at times and mobility and function will be worse
    at some times than at others depending on what I’ve been doing and as I
  • I have a very good level of fitness which helps considerably
  • There are few if any signs of inflammation so the conclusion is that
    Humira plus Mtx are continuing to do a really sterling job

And what I want to say to anyone who has been recently diagnosed is please take on board just how destructive PsA can be and how rapidly it does its fiendish work. Your joints may not be collapsing before your eyes but if the disease is very active the chances are that there will be irreversible changes going on and plenty of them too - there are so many joints in the human body.

I’m more aware than I ever was of the very real need for early, aggressive intervention. Almost all the literature and protocols etc. etc. recommend this these days and there is very good reason for that. I’m doing okay, I’m happy and life is good. But had I had aggressive treatment much earlier things would most likely be even better and, in terms of joints, the future would be brighter too.


Wow, Sybil on all sorts of levels. Thank you!

But the wailing new to this disease, person, truly never understands. Do they or indeed, do we? I was one of those and with great huge, loud, argumentative and disbelieving knobs on, too. I was utterly just terrified really, though.

Actually you all told me that then, but I was incapable of understanding as I was just so ‘pissed’ (American for those of us not, ‘so pissed off’ for the rest of us) and gosh did I have a tantrum. Not just here, but everywhere. Given my profession, job, education and the rest, it was something of a tornado of a tantrum, too.

Didn’t like my first rheumy and gave him some hell as well, but he was right, all the way down the line. Still happy he’s not treating me, but poor sausage, frankly.

It both horrifies me and mostly fascinates me that last Friday at my now much more cogent rheumy appointment, that she just looked at me after physically examining me (the original never did) and said ‘gosh, you’re the worst I’ve ever seen you.’ I wasn’t actually feeling the worst I’ve ever been. At all. Yes I was struggling but nothing like I was when first diagnosed. That in itself tells a story. Sadly.

In the UK anyhow, I think many of us just have to ‘do’ our time, sometimes. NICE demands it, certainly. And not without due reason either given it mostly costs us just pennies to be treated with such enormously expensive drugs, eventually.

But I’ll be ever thankful to this forum for not just putting up with me and my tantrums but endlessly simply educating me too. The care you all showed me was phenomenal. The sheer education was life changing. And the friendships that developed consequently often made me just cry in reliefI


Me too, Poo, me too.

I just needed a framework for understanding how things are for me at this stage of the game, an agreed framework. I may know stuff now, but I needed to be on the same page as those in charge of my treatment and this appointment helped with that. A friend I met on here sent me some very timely advice about trying to reach a consensus with the rheumy team - it really helped.

And obviously the appointment also emphasised the risks of foregoing treatment for too long. The timelines suggested by the NICE protocols are not always followed. Allowing for the delay in referral to rheumatology, I was flaring for 18 months or so before starting any treatment whatsoever and about 3 years before starting biologics.

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[quote=“Sybil, post:1, topic:8639”]
My joints are likely to kick off and deteriorate in various ways because of the damage done [quote]

And that is exactly what happens…I’m experiencing it in my feet and ankles and I feel helpless to do anything to stop it. Enbrel is working for me, but I made a big mistake by NOT doing the early and aggressive treatment. Now it won’t be long before I need some sort of mobility device, at least for any walking outside of my home. I’m planning on asking my rheumy at my appointment this month if he’ll write a prescription for one, and maybe my insurance will cover it.
This is the price I am paying for my stubbornness and delaying treatment because of my fear of meds and doctors.

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It’s really difficult taking on board that damage does happen & happens fast.

I expect I’ve told others that the disease is aggressive hundreds of times but I’m still quite capable of burying my head in the sand in various ways.
Of course I already knew I had all sorts of damage but rather than admit the implications of that, I’ve been inclined to see any new or lasting pain & loss of function as signs of active disease. I wasn’t far from reality but just needed a little nudge back in that direction. To be fair though, communication with medical folk hasn’t been that great recently so I was due a good appointment.

What sort of mobility device are you thinking of? Aha, just seen mention of a scooter in another thread …


I’m more inclined to blame my lasting pain on damage…but it’ll be interesting what my rheumy thinks when I explain my feet and ankles to him. A few years ago (more than a few–probably about 6) when I had the horrible pain and neuropathy in my feet I had no idea it was one of my PsA symptoms or that it was causing damage. But, knowing what I know now I really think that’s when most of the damage occurred. Presently, I’m wondering if the pain is not only damage, but active PsA also.
I wonder if others here let the disease get in their head as much as I do. There’s not an hour that goes by that I don’t think about my painful feet and worry about not being able to walk in the future. Being on sertraline hasn’t really changed my focus–my husband and kids tell me I’ve calmed down, but I don’t agree. I’ve even been itching something awful and breaking out in little psoriasis bumps all over my arms and legs. My scalp is itching, too, and it’d be VERY disappointing if psoriasis would break out there since it cleared up 4 years ago when I went on Enbrel and I’ve been spoiled not having to use the yucky shampoo or greasy betamethasone on my scalp all that time!!!
This disease can really get to a person (me, for sure) and my outlook on everything has changed over the past couple years, even though overall I feel tons better since being on Enbrel. I don’t remember worrying this much when my PsA was active and I felt sick all over.
Well, anyway, Sybil, you seem like a person who can handle the challenges of your PsA much better than me (and many others, I guess). Can you share your secret for mental strength???

Remember me? I used to come here often. Oh my dear friends, I’ve been sooooo absent. We left home on April 18th. Starting in Florida, we took a transatlantic ship to Copenhagen, then went land-based to Holland, North Wales, the Peak District, the south coast of Ireland, Dublin, and Newfoundland before ending up back home on June 5th. The best part was the glorious weather we had in the UK for most of May. But this isn’t the time or the place for a travelogue!

Sybil, thanks for the food for thought. All of us need to hear those things again (and again) even though we know the facts and we’ve told others. Repeatedly. Just don’t mess around with this disease! Pain isn’t much of a guide to tell you how bad your disease is either (right Poo?), so “I’ll tough it out, it’s not that bad” is a really dangerous game to play. To our newbies: trust us. You don’t want a demonstration of what PsA is capable of doing to you.

Poo, how could we forget your tantrums? They weren’t a bit pretty, were they, and I had to remind myself that it was worse for you than it was for any of us bystanders. I predicted that you’d come back, and I was thrilled that you did after a year or so away. You’ve been such a great addition to our merry band of limpin’ lords and ladies.

GrandmaJ, I’m so sorry that you’re at the point of thinking in terms of a mobility device. That sucks, but if it’s what you need in order to keep living life on your terms (and not on PsA’s terms) go for it! And don’t forget to take it to Walmart, and make it go fast. LOL

I’m feeling well, despite the cold that I am nursing now. In July I will see my surgeon about a hip replacement because, although it’s not terribly painful, I’m suspecting that it’s the cause of some back and sciatic pain I’ve been having. And then there are the changes that showed up on the x-ray of my spine (facet joint damage and my spine’s now showing a 10 degree deviation from vertical). This disease is a never-ending source of amusement, isn’t it? If I didn’t have PsA, what would I do for hobbies, I wonder?

That’s all from me for now. We’ll do a proper catch up later. It’s so nice to be back again.


She’s back!! :joy::smiley::fireworks:

Really exciting holiday by the sounds of it! Great to hear from you again Seenie! The hip and spine … hmmm. Oh my.

I’m grateful to all of you for replying to this post because I think it’s a little incoherent in some ways. There’s a history involving my current rheumy team looking after me very well but not really explaining the damage I have in terms that made any sense to me until now. And I think after a few years docs may think there’s nothing much to discuss but we still need good, clear input on our current situation while allowing for the fact that change is likely.

@Grandma_J, I understand that you may have active disease in addition to damage. I hope not but I also hope your docs will investigate thoroughly. I don’t have any special mental strength my friend, I think it’s more that my PsA has been more stable than yours. You’ve had a lot to cope with, lots of nasty things happening out of the blue and your anxiety is therefore not surprising. But clearly you’d love to feel a little more centred (what a woolly word, sorry!) so it’s worth considering how you might achieve that. What do you think might help?

Seenie, I know you’re a step ahead of me as far as mobility devices (no pun intended). I’m sure you went through all the emotions I’m experiencing now—maybe to a lesser degree, because you, like Sybil, seem a little more accepting of the challenges of PsA! I.e., so matter-of-factly your mention of a possible hip replacement in the future. I’d be devastated and frightened to the enth degree facing a surgery of any kind!!!
Wow, what a trip you took! I was wondering where the he** you went!!! I thought you’d decided you’ve had enough of LWPsA :confused:

…that’s debatable!

I’m pretty much convinced that my dilemma is the fact that my parents did so well. It even makes me just a little envious when my mom points out my swollen ankles and shows me her skinny, bony ankles and feet which, BTW, at 93 she’s still never experienced swollen ankles or anything, for that matter. Yes, she has dealt with OA and polymyalgia rheumatica, plus a few other things—but overall she’s had great health and also a good outlook! I sometimes think, am I just a big baby? Worry wart? Nut job? All three of those? …don’t answer that!!!
Anywho, Seenie, glad you’re back! And Sybil, I’m glad you got some good feedback from your doctors. I still say you’re one tough cookie!

@Grandma_J, I wrote some gibberish just now but deleted it because it occurred to me that you’re a caregiver. That has to be one of the toughest roles going as well as one that is most worthy of respect. All in all you have a lot on your plate.

So as much as I love compliments, I hope you at least acknowledge that you do an amazing job managing your PsA as well as looking out for others. And that combination is stressful, there’s no doubt about it. I don’t really have anyone to worry about in practical terms other than myself.

I have to give Enbrel the credit for managing my PsA! Don’t you wonder sometimes how awful it would be if we didn’t have our biologic?

Haha, stress is what you make of it! Some stress is healthy, they say. I’m not too much of a caregiver, but life with such a large family, part-time job and my husband is a bit hectic, for sure. I really do try to make the best of things—most of my anxiety, I think, is internal…except for here on this website!

This place has done me tons of good—it’s always nice to know there are others in the same boat—or should I say life raft?—and we can all relate for the most part.

You mods have been so kind and understanding—even when I’m sure there are (many) times you’re annoyed!

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Thank you Sybil and GrandmaJ for the reality check for us newly diagnosed.

In hindsight, I think I’ve had skin issues on and off for decades but the tendon pain just started a few months back. Sent myself to a rheumatologist who quickly diagnosed me as I have the HLAB27 gene.

After lots of research and words of advice from folks like you, I moved quickly to Enbrel and have just finished my 2nd dose. Relief was significant and amazingly fast. Walking normally now and feeling better…hoping it lasts for a good long time…fingers crossed. Until Enbrel, I didn’t realize just how bad it was…all my blood markers have always been normal.

Nevertheless, if not, I will stay aggressive as long as i can. Thanks again for all your advice.


:rowing_woman:Life raft is a perfect term, I think.:rowing_woman:

We are so fortunate to have treatment alternatives that other generations didn’t. Imagine the shape we’d be in if the only real relief came in the form of prednisone. I saw my mother-in-law go through that, and it was hell.

But hey, what makes you think that I don’t have anxiety? I present as a pretty tough cookie, but I have my episodes too. Really I do.


Thank you for sharing. I’ve had psa 6 years. Similar story. Now trying Symponi after trying others. Your info really states very well thoughts that’s have been rumbling in my head. Wish my rheumatologist was so plainly spoken. Your words help.

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I did have to tease the explanation out of her, Bern. I think another time I’d just say ‘can you briefly explain just what is happening in my joints that is causing pain & impacting on function’. Previously I’ve tended to get the ‘it’s all OA’ line, only slightly modified when I suggest that it’s caused by PsA.

Ages ago I read on here that all manner of things happen to joints that are affected by PsA. And soon after I attended a patient education course with a mainly mind-numbing slide show. I woke up just in time for the bit that hammered home the exact same message. Jumped out of my seat yelling ‘could you go over that bit again!’. Since then, it’s the over-simplification that has done my head in I think.

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