OK to self manage PsA if it's mild?

Welcome Greetings and Introductions
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Reading some of the posts on this site has confirmed for me that my case of PsA is pretty mild at this point. I feel bad for you folks for whom it’s a much bigger deal, and a very pervasive thing…

I have a couple of patches of Psoriasis on my legs, and I have had (what I thought was ) plantar fasciitis for 20 odd years, but the usual stuff for that condition never really cleared it up. I have been prone to trigger finger and tendonitis through the years - mainly in my thumbs.

I was diagnosed with PsA about 5 years ago and went on a small dose of Meloxicam. I was on that for 3 or 4 years. Last year I started getting abdominal pain and came off it. My rheumatologist prescribed Otezla (apremilast), but I have not started it.

Here’s the deal – at this point my symptoms are quite manageable, and I’d rather not go on meds if I can do without them. My left heel hurts some of the time, but not all of the time, and it’s not swollen. My right thumb joint is pretty swollen, and hurts when I put pressure on it, but it’s manageable. (Opening bottles and jars is challenging, and I had a heck of a time getting a battery out of my car the other day, but so far I have pretty much managed!) At some point, I should go and see my rheumatologist again (I did call to let them know I was not taking the meds.) She said the point of taking meds is to prevent long-term joint damage.

I’d be interested in folks’ take on my current approach. Is this wreckless? Is it reasonable? So long as it’s manageable, is there really any great harm in not taking meds and not seeing a doctor?

Thanks!

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Before answering your post, I checked your profile to see your approximate age. Yes, the point of the meds is to slow long term damage. When I was diagnosed at 36 years old, with a projected lifespan of 40-50 more years, slowing joint damage was and continues to be very important to me. How many years do I want to spend disabled? Not too many, hence the meds. Even with the meds I’ve got some degree of damage.

But let me also mention my mom. She had joint damage starting in her late 50’s, early 60’s. She’s now 74, and her hands are destroyed. She wasn’t diagnosed until just a few years ago, and it was a lot of damage in a relatively short period of time. Because of her age, they kept insisting that it was osteoarthritis. It wasn’t. Damage can happen really fast, so you can go from manageable to permanent damage really fast. Some thoughts for you.

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Wow…thank you, just the sort of input I’m looking for…

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One of the many things I’ve learned here is that there’s a difference between symptom control and disease control. And from your post it does sound as if you realise that too.

However, if I’m honest, I too might have difficulty gearing up to take the drugs if my disease were apparently mild and always had been so far. I feel as if I should really recommend that you take Otezla, but I’m sitting on the fence.

What I would recommend is that you engage with your rheumy, at the very least they may be willing to monitor your PsA. For example, what is happening with that thumb? At the first sign of joint damage I think I’d probably reach for the Otezla … as I understand it, swelling is something of a red flag. Yep, that could be too late for that joint but if you really don’t want to dive in, at least test the water, and keep testing.

I would add that I seem to have had PsA for many years before diagnosis but at a low level. When it decided to make its presence felt it hit me like a steam train. And also it does come with some symptoms that can be mistaken for bad luck, laziness, depression etc. etc. So don’t gauge its effects by joint symptoms alone because you just might have widespread inflammation that is affecting your overall health.

I wonder if your rheumy could find time for a really straight-talking discussion about this? That could help a lot with your decision.

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I’ll also add in, my husband was recently diagnosed with PsA after many years of psoriasis that he’s been sort of successful managing with topicals. The dermatologist has just recommended that he get started with Otezla for the psoriasis, with the obvious benefit of helping joint problems as well. I’m trying to encourage him to strongly consider it. I think that a lot of his “old man” problems (we’re 46 years old) might be seriously decreased with systemic medication.

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Hi paulharv, and welcome!

I can relate, because I’m one of those people who had slow disease progression. I confess, I didn’t look at your profile, so not sure how old you are…

My psoriasis hit hard when I was in my early 20s. Got it fairly under control with UV treatment, tar shampoo and cortisone cream for many years, but about the time it started being unmanageable my joint pain started, not severe–at least not as I saw it. I also had plantar fasciitis in my 40s, lower back pain, etc., but with P.T. and TLC it went away for several years. It wasn’t until my early 50s the PsA symptoms started–pitted and loosening nails, lots of tendonitis and stiffness–and I was promptly diagnosed at 55.

Like you, I didn’t want to take anything. I’m very pessimistic about meds, and the DMARDS and biologics scared the bejeebers out of me! So I politely declined my rheumy’s offers of prescriptions for Sulfasalazine and Methotrexate…also, my rheumy had told me that I had slow disease progression and it would probably continue like that.

Well, it did, for a few years. But, the pain did sort of have a snowball effect…at first, I was like you, I could handle it without meds. I rarely took any type of pain pill. My doctor gave me prednisone twice and it worked wonders. Have you had any prednisone yet? It will take away all the inflammation–AND can put you on cloud 9–it did me.

I can’t tell you what to do. I have two nurse daughters who thought I was nuts not taking the meds–especially the biologic when my rheumy first recommended that. Finally, I found this group and they basically told me I was crazy for not listening to my rheumy’s advice, because like a couple people mentioned above, the damage is happening, and once it’s there there’s no fixing it.

From what you’ve described your pain as, it sounds like how I was when I was 55 and first got my diagnosis. At 61 I went on Enbrel (a biologic and my first serious med for PsA)–I had my PsA diagnosis for 6 years. By that time, my pain was horrible. I really didn’t think I’d live to see 70. Enbrel made me feel good again, and at the time I regretted not starting it sooner.

I have some damage to my back, feet and thumb joint, etc., but the pain from that doesn’t compare with how terrible I felt those last couple years before I started Enbrel. I’m happy how I approached the disease and that I waited, because it’s what worked for me.

Be careful in waiting, though, and if your pain becomes more severe or widespread as mine did, do something right away. It can take weeks to months before meds work or before you get a biologic. I was lucky to get the biologic as my first med, as so many years had gone by with documented joint problems and pain that it wasn’t a problem at all getting my insurance to approve it. Shucks, I saved them tons of money not treating the disease for all those years!

Good luck with your decision…you’ll know when the time is right!

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Hi Paul,

I’m one of those who had psoraisis badly as a teenager - managed to make it virtually go away and thought nothing of anything until I had a bunion correction operation at aged 53. Quite simply put I never receovered from that bunion operation. PsA took hold and ran over me. I was diagnosed with little blood tests results showing much and x-rays showing no damage but rampant initial pain in hands, feet and hips. I sat fuming for a year. Yes seriously I had a temper tantrum. But I was put on prednisolone and felt pretty good on that. Then I changed doctors and got reassessed. In that short year, damage could be seen in my feet, hands and hip. So I started treatment and kicked myself I didn’t perservere a year earlier.

So far I’m on sulfasalazine and finally it’s working. So ostensibly my symptoms remain relatively mild and I tolerate it just fine. But I’m so glad I’m doing ‘something’ coherent. And I truly wished I hadn’t sat just fuming for a year.

I’m of the view great harm can be done not taking meds and not seeing a doctor. This disease is insiduous and alarmingly contrary. Basically you like all of us have an out of control immune system, like a very wayward teenager who loves tettering on the edge of self-destruction. I prefer being in the position that I’m taking the meds, getting seen by a doctor regularly and doing my best to keep away from that self-destructive edge. This disease isn’t just about joint pain or swelling, it’s also about weird horrid pain along tendons and ligaments, it’s about rib pain that makes you think you’re having a heart attack, it’s about crushing fatigue that truly can be just so disabling. It can invade all sorts of parts of you which on here you can see some suffer with. It can do all of this or indeed little of this just because it feels like it. No one knows when or if it will or it won’t.

I hope this helps.

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Thanks so much, Sybil, Grandma_J and Poo_therapy for your input. All of this has really got me thinking!..(@Grandma_J – no, I’ve not taken prednisone.)

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I hope you stick around @paulharv. We don’t hear a lot about apparently mild PsA here, which is a shame. I doubt very much that you are the only person with this dilemma, far from it. I think it’s a really thorny issue.

I often wonder what I’d have done if my PsA had been diagnosed when it was much quieter. I hedge my bets by thinking I’d have hoped to start treating it aggressively at just the right point. But as it’s hypothetical I don’t have to identify that point!

I mean, you may decide you’d like to contribute quite a lot here, or you may only read occasionally or something in between. But I think it might help to just keep us as a resource at the very least. And I do hope we hear more from you!

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Hi there Paul, I can only strongly agree with what everyone else has said here in reply to you. I’m fairly new to this group and they are FANTASTIC! The only group I’ve come across with positivity, humour and invaluable advice and support. They truly do understand the issues surrounding this unpredictable and unique disease!

Like many, including you, I had low level symptoms that I put down to many other things over a period of about 14 years. I was once diagnosed back then as having ‘probably fibromyalgia and depression’. As I’d just lost my son it seemed a likely diagnosis at that time. Over the following years I was diagnosed with osteoarthritis, IBS and others. I took no medication whatsoever and prided myself on that - I started an anti-inflammatory diet and reaped great benefits from that (and lost two stone!). Felt great for a few months - then again, like many here, PsA decided to introduce itself like an overnight sledgehammer attack last June (2017). Lost the use of my hands, wrists and right leg with excruciating pain. I was lucky enough to have great GP support who didn’t mess around and referred me urgently to a Consultant Rheumatologist after seeing my blood test results. He also gave me a short term high dose corticosteroid (Prednisolone) to help in the meantime, which had to be repeated twice before I got a hospital appointment. Magic pills! I was seen within a few weeks and given a corticosteroid injection into my gluteus maximus muscle (my bum!) for slow release throughout my body, another one directly into my right knee joint, and put on Methotrexate. Six months later it stopped being so effective and I’ve now been put forward for a biologic (Humira).

Basically what I’m saying is that low level symptoms can indicate underlying trouble! I was so opposed to taking any medication that I cried!! But common sense took over and I’m so glad I started in them now. I’ve got minimal joint damage and hopefully won’t be too disabled long term. I’d absolutely hate that! My hands and wrists are worse affected and as I’m an artist, writer and blogger this disease could take away a very important part of my life if I don’t take the meds.

Worth thinking about…keep coming back here for the best advice and support and for others experiences. PsA is VERY unpredictable. Good luck :blush:

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Katie said it, paulharv! That’s the thing about this disease. Here’s something else to think about: pain is a very poor indicator of how severe your disease is. How you perceive your pain depends on a lot of different things. Yes, I had pain, nagging, chronic aching. My GP thought it was nothing that couldn’t be cured by weight loss and healthy eating. This went on for years. Then I got sore knees, and suddenly I was signing the permission forms to have them replaced. “Osteo” said the GP. I was tired. “Menopause” she said. My feet were sore. “Get new orthotics”. Then one day, I had a foot x-ray and there was extensive erosive damage all over my midfoot, too bad to be treated surgically. Lesson learned: my perception of pain is dangerously misleading. That’s when I was diagnosed with PsA.

My rheumatologist treated me as a mild case, and had me try all the usual DMARDs. I asked for a biologic, because I didn’t think I was getting better. She refused. Then one day, my hip got really painful. I had an x-ray. It was trashed, and I needed a hip replacement PDQ.

At that point, I’d had enough, and I bolted to a Psa specialty clinic, staffed by some of the top PsA researchers in the world. They examined me in painstaking detail and discovered many joints that were inflamed. Trouble was, they didn’t feel sore to me: doc squeezed the joints and I just sat there. Apparently, I should have been squealing. Those doctors declared my disease “severe, and with a great deal of damage”.

All that was happening while I thought I was tired and achy, and my GP thought I was an OCD whiner, and after I was diagnosed, my rheumatologist thought my disease was mild. Moral of story (for me, anyway) is: if you are diagnosed, don’t use your pain level as a disease severity gauge. And if your rheumatologist is casual about declaring your PsA mild and nothing to worry about yet, get another opinion. (Yours, paulharv, is not: I’m impressed that s/he has prescribed Apremilast.)

One day @tntlamb is going to show up here and say that mild PsA is like a mild pregnancy. LOL What I like to tell people is to accept the most aggressive treatment that your rheumatologist is willing to prescribe. This disease is one slippery fish: stay ahead of it.

So long as it’s manageable, is there really any great harm in not taking meds and not seeing a doctor?

Maybe, maybe not. You could take a “wait and see” approach. We don’t want to scare you, but the risks are there. At least my damage was because of doctors asleep at the switch, and not my fault. That’s about the only good thing I can say about it.

Glad you’ve joined us! I hope you’re (still) glad too.

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Thank you Paul for posting such an interesting take on PsA treatment, which made me question my own relationship with PsA. Having read the many helpful and thought provoking replies you’ve had I don’t have anything to add… but I’m waiting to go into my own annual rheum appointment (and I’m doing some last minute cramming on here so I mention everything I want to bring up!) and it’s an approach that should be discussed. I think it is a personal choice and a brave one, too often I think people can just go ahead with whatever the doctor suggests without even thinking that there could be other options. In my opinion the best way forward in all our personal fights with disease management is to be well informed. I hope your PsA stays quiet and well behaved but keep an eye on that thumb!

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I agree for the most part, MommaBear, although I think it’s brave, too, to trust the doctor’s knowledge and go ahead with the meds, because they all come with some scary warnings and the outcome isn’t always a positive one.
Some of us just need more time to sort things out and weigh the pros and cons. I’m one of those people, but I was lucky in that the disease, even though diagnosed, was very mild (I thought anyway)…when it got more severe I didn’t wait around too much longer before getting on Enbrel.
That’s why I tell people, you’ll know when it’s time—you’ll feel so sick you’d do almost anything to feel better! I honestly thought I’d never go on a biologic!

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Hi Paul,
Compared to a lot of the others on this site, I have fairly “mild” PsA. I am able to work full-time, walk about 8000 steps a day and swim weekly. Interestingly, I had plantar fasciitis for about 18 months before my diagnosis and my main symptoms now are sore hands, feet and very sore right hip if I do too much walking (more recently).
However, I’m only 46 and therefore have at least 20 more working years ahead of me and am also keen on the best quality of life i can have with lots of holidays and travelling.
For me, the key words are “disease modifying” when it comes to medication. I’m not overly keen on pain killers, but something that may halt my disease progression of even put it into remission (as it has for my brother) I am happy to try. So far I’ve tried Sulfasalazine for about 18 months, but have just last week been started on Methotrexate as the SSZ wasn’t really controlling it. I will then balance side effects versus benefits, but fortunately my rheumy nurse specialist (who’s much better than the rheumy and able to prescribe!) is of a similar mind.
As an occupational therapist, I have seen the effects this and similar diseases can have on the body and your independence, particularly before the new drugs came along and I don’t want to go there if I don’t have to. However, everyone’s experience of the disease is different and only you can decide.

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One thing that is also worth keeping in mind, from a purely practical point of view, is “the gap”.

Many with PsA, once they seek DMARDS, still have a substantial amount of time in the gap, trialing different DMARDS, until they find one that works.

So, another way to look at it, is that while it is still mild, finding a DMARD that works now, means that (particularly in the hierarchy system of moving through the cheapest, and least effective DMARDS first), if it does hit you like a truck (as many of us have had after either a few or twenty years of odd, nagging issues), you are probably a year or two ahead of where you would be - which can be a year or two of incredible pain, disability, muscle loss, even job loss.

If, knowing what I know now, somebody sent me back to the time those odd issues started 2 years before diagnosis, then provided me with diagnosis and options to try a DMARD straight away, I’d take it with both hands.

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Look out for that truck. When it came along I realised there had been distant rumbles well in advance. I spent the summer before its arrival on a remote island, working out of doors 7 days a week & living it up a bit as well. Yes, I had a very swollen knee … yes, I slept very badly for someone who was getting so much fresh air and exercise … but hey, no worries.

Like heck! I just plain collapsed on the overnight ferry home & things have never been quite the same again. Though I would describe my PsA as quite ‘mild’ again now, thanks to aggressive treatment.

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