Restarting the fight against PsA after 15yrs

Welcome Greetings and Introductions
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Hi there!

So I’m from Sydney (the Australian Sydney), and write about wine (yes, it’s a tough gig).

Anyway, I’ve been lurking for a few months on the site and thought it was time to introduce myself. My story is perhaps unusual as my disease trajectory hasn’t followed the normal prognosis, but I’m stuck in the thick of it now (and keen to hear some other perspectives - I’ll get to that).

Apologies if this is a long read.

I was first diagnosed back in 2000 after developing stiffness in my wrist. I was just 19 and it seems like ancient history now! It took perhaps 6 months for a diagnosis and then my disease kicked off fast after that - I went from sore wrist, to dramatic inflammation in hands and feet within just a few months.

My memory is hazy about exactly what I took and when, but I tried gold salts and sulfasalazine with minimal effect. i still don’t know why or how I ended up stopping either DMARD after only a short time, however I found that I could cope ok just on Celebrex twice a day.

From there, I found my arthritis hit a point and then improved independently. I went from twice a day Celebrex, to one, to none, all in the space of probably 18 months. Then the stiffness and pain was gone. That was 15 odd years ago!

I still don’t know how I ended up landing in spontaneous remission, but since then I haven’t really thought much about arthritis. It was a part of my past. It was likely that I fitted into the category of ‘low disease activity’ for some of those years as I can recall the odd sore wrist and puffy finger flare (plus dactylitis in one toe). But long periods in between of minimal soreness or inflammation.

All of that changed last year. I run ultra marathons (or I did), and I found my ankle was persistently sore. I’ve had bursitis in that ankle before, but this was different. The pain didn’t go away after days off running. Looking for answers I ended up at the physio, which led to the osteo, osteo led to GP and GP then led me to rheumatologist as a long shot.

My GP helpfully ordered an MRI and lo and behold I had synovitis in the tendons of my ankle. My (helpful and supportive) rheumy pointed out that as the inflammation was so widespread, and given my history it was likely an arthritis flare up.

I was pretty depressed at the thought of having to fight arthritis again, even if it was just my ankle. I started on sulfasalazine (and Naproxen SR) as first choice DMARD back in October, hoping to knock it on the head. Surely I’d just start getting better quickly?

Nope. My arthritis got much worse even while taking sulfasalazine, with my CRP jumping from 7 in October to 28 in the beginning of December, and the stiffness and inflammation coming back with a bang in my fingers. Bugger!

What’s worse is that I ended up with a chalky taste in my mouth that wouldn’t go away. That was mid December, and the chalky taste went as soon as I stopped the sulfa - hello rare side effect - and that was that. Since then I’ve been on what the rheumy calls a ‘drug holiday’ to work out what to do next, with a blood test coming up in the next few weeks. Thankfully I’m feeling better since December (interested to see my CRP now), but I can’t ignore that my ankle is puffy and my hands are stiff and sore.

So the next question I have is what to do next. My rheumy has picked out leflunomide as my next course of action, but the contraindications with alcohol makes this a potential disaster zone for my job (I’m careful of how much I drink but alcohol is an unavoidable work hazard ha), and was the reason why I didn’t start on MTX.

The other option is what the rheumy called ‘the big hammer’ and go straight for the biologic option. It seems like a no-brainer to go straight to something that will likely help more effectively - my osteo is on Enbrel and calls it a life saver. But I’m also conscious of the side effects of the ‘big hammer’, and that I may even need to jump through more DMARD hoops to quality (though my rheumy thinks we can massage the paperwork to get me approved quicker).

In the meantime it has been doing my head in trying to work out exactly how my arthritis kicked off again after such a long time. I know I probably shouldn’t be preoccupied by this as there are no answers, but damn it is hard to get past!

Right now though I need to start thinking about what to do. Do I give leflunomide a go and just be even more vigilant about what I drink? Do I push for the ‘big hammer’? If I went down the Biologics road is Enbrel the best option or is another biologic a better starting point?

Apologies again for the long post and thanks for any feedback!

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Hi agrah002, and welcome. Nice that you finally joined and shared your story with us! And a very interesting story it is! I don’t know that many people have symptoms that disappear for so many years, although a lot of us, looking back, have had brushes with unusual, unexplained aches and pains over the years that weren’t diagnosed. Glad you did have the remission(s), but sorry you’re only in your 30s and the symptoms are hitting so hard. You’re definitely not alone, but I have kids your age and I dread the day one or more of them faces the challenges of this inflammatory, painful disease (and it seems inevitable, although they’re all okay so far).
I had to get in a plug for Enbrel because it’s the biologic I started on and it has done me more good than I could have hoped. I think a lot of rheumies offer the choice between Enbrel or Humira for the first biologic. I don’t know why, other than I think they’re the two with the longest track record and countless people have benefited from them. When you say ‘big hammer’, you hit the nail on the head (LOL), but I would say from what I’ve read about the DMARDS and NSAIDS, compared to most of them, the ‘big hammer’ is more like a rubber mallet–it won’t harm your liver and you more than likely won’t have any SEs from it!!! So, it’s a very gentle hammer! I liked the fact that Enbrel is injected once a week–I was afraid of biologics at first and I knew if it did cause me problems they would wear off in a week! I’ve been on it for 3-1/2 years now and I don’t mind the once-a-week shot at all.
The only SE most people get from it is a reddish area around the injection site after the first few, but small price to pay for the relief it can give!
Good luck, agrah! Let us know how things are going–sounds like you have a great rheumy!

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Thanks Grandma J!

I do have a good rheumy - my osteo put me on to her and she is all over it.

I did start reading about the increased risk of cancer from biologics which sounds scary. Or is that one of those rare side effects that has to be mentioned?

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Hi @agrah002! The increased cancer risk is still super small, and likely associated with the disease and inflammation, not the treatment. I started on a biologic 4 years ago and haven’t even had any increase in infections. Actually, I’m least likely to get sick in my house, and we just had flu run through my house, so that’s saying a lot.

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Hi @agrah002, welcome!

The tendency of PsA to come & then (apparently) go isn’t something that gets discussed a lot, but I think that’s how it is for many of us. I first had symptoms at 16 and in retrospect I can see signs of the disease, though not major ones, throughout the years. Finally diagnosed at 55. I also had 10 - 15 years of psoriasis, constantly, only for it to disappear literally overnight and remain dormant for about 20 years. Unfortunately though, it does look as though once it’s more established it hangs around. But perhaps the pattern you describe means you’ve got a fighting chance of many very good periods.

I’d see Leflunomide as more of a big hammer than biologics. To me the biologics resemble a laser beam - targeted and selective - ‘smart’ drugs. I think the cancer risk does indeed come into the category of correlation. Inflammation is a hot topic in the medical world it seems … the cause of many ills. The longer I have PsA the more I see the underlying inflammation as my main enemy & Humira as my main weapon against it.

I think Leflunomide and alcohol are simply a big NO! Many of us on Mtx have the occasional drink with or without our rheumies’ blessing (advice on whether some / none is okay does vary). But I don’t recall hearing about any PsA patients on Leflunomide being able to drink at all without getting raised liver enzymes.

How and why did your PsA kick off again? Because you have it is probably the answer, that’s just what it does. We all ask ourselves these things, that’s only natural, but it is a weird condition. Could be that accumulated but barely detectable damage to joints from just plain living (or running marathons or washing up or whatever) may trigger PsA. Again, unavoidable. On the other hand, an active lifestyle, plenty of exercise, truly help to reduce pain and fatigue, so you’ve got that one covered already!

Good luck whatever you decide.

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Hi there,

So sorry it’s all started off for you again but it sounds like you’re on to it fast. If I had to drink alcohol for my job, I’d be looking at mxt well before even considering leflunomide, given its potential on your liver. Also remember leflunomide stays in your system for up to two years (I think). You can get it flushed out but…

As for why it started up again, my view is just because it felt like it. I consider my autoimmune issues to be rather like an uncontrollable child. Little reason works, no amount of just talking works, you certainly can never anticipate what might happen next and you’ll be endlessly surprised. In your case hopefully positively. :grinning:

As for which med works best - there’s no real answer. It solely depends on which work for you. Sulfasalazine works well for me. Mxt hated me so much that I couldn’t get past week two on it in either tablet or injectible form. Here loads of people do well on embrel, others better on humira, for others neither works and they are on yet other biologics. The good news is that more and more drugs are being developed so if some don’t work at all, or just stop working, there is more to try. I’m a firm believer something will work or at least help though.

So my advice is just take a deep breath and try whatever one is suggested. However I’d be really wary of leflunomide and a job that requires me to drink any alcohol.

Let us know what happens. And as everyone said already, it’s marvellous you’ve got the exercise issue so well covered - that above anything else just so helps.

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Thanks @Sybil and @Poo_therapy.

I had no idea that Leflunomide was such a no-no with alcohol. That really changes my perspective!

It really sounds like a need to push for biologics. No if’s or buts

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On mtx i did get “drunk” (and sick from it) much faster when drinking alcohol… I’m not sure how much alcohol you absorb when tasting but it might not be a good idea either if you can’t do your job properly… if your doctor is willing to prescribe you a biologic without trying mtx or leflunomide first then I would definitely do that.

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Me too. But I’d put it down to age, which does not apply to you! Interesting. Infuriating but interesting.