Hi all, I’m relatively new to this group and to PsA. I was diagnosed ten months ago with several fingers joints affected, as well as both wrists and feet. After a couple months on methotrexate I was switched over to a combination of sulfasalazine and hydroxychloroquine (max. dose on both), and after a few months the PsA seemed to settle down, the fatigue almost vanished, and I’ve been able to live a relatively okay life again.
Except that the last few weeks, things have been getting worse - my right hand is in constant pain, with the finger joints getting stiff and inflamed again, plus the old fatigue has started to sneak back and I’m not sleeping because of the pain.
Is this what would be considered a flare up? This disease is so new to me I feel like I’m still figuring it all out. It’s frustrating, and I’m trying not to go into panic mode thinking the meds have already stopped working.
I’ve called my rheumatology nurse and I’m waiting to hear back from her, but would appreciate any advice in the meantime. Thank you!
There may, for all I know, be ‘official’ definitions of flare-ups. However, in my experience it comes down to ‘are things getting worse, better or staying the same?’. And if you have new joints that are showing signs of inflammation such as swelling and stiffness, or joints that are already affected become more swollen / more stiff / more painful, then clearly things are getting worse and most patients and doctors would consider that the disease is more active.
I suppose one of the most useful ways of looking at flare-ups is as a description of relatively short-lived bad patches. Most of us get those, even when PsA is quite well-controlled. But if these symptoms last that would suggest that your current medication is not cutting the mustard and it is time to move on to something else.
Excuse me for not being more specific, I’ve only had PsA for 6 years and am still figuring it out (I may have given up). I am lousy at doing sensible things to help painful joints, others will have some good ideas I’m sure. But the fatigue, oh my, I know that all too well and have tried everything. Counter-intuitively, exercise does help, as does trying to pace yourself and really good lifestyle choices e.g. a healthy diet, no or very little alcohol etc.
How would you feel about moving on to biologics? Could be that it is time to do that.
I was probably going to write along similar lines to Sybil. A couple of things though - why did they stop mxt for you? Was it side effects?
I had a marvellous 7 month run on sulfasalazine on its own and then it just stopped - just like that. I had a great 3 weeks on a biologic called Benepali - then had to stop it for a week in August and it still hasn’t got up to speed again, so I’m thinking me and it won’t have a long relationship, sadly.
The problem is at the beginning it’s a trial and error to find what works and stays working better than what you’re suffering now and most likely better than what I’m suffering now too.
So keep on at your rheumatologist and please don’t panic either. Nothing with this disease appears to stay the same for long, (I’m only in my third year) and it can and does often get better for a bit too, as well as just misbehaving like it is for you presently.
As for easing things, soak the sore bits in Epsom salts and use hot and cold too. And honestly some meditation, yoga, swimming as in floating around in a pool really helps as does simple paced little and often exercise such a short but nice walk a couple of times a day.
Thanks so much for replying. Things have definitely been getting worse the last month in terms of pain and inflammation, which is really disheartening after almost two months of feeling relatively good. But I guess what I’m learning is PsA can be really unpredictable.
I had a callback from my rheumatology nurse yesterday and they’re getting me in next week to have a steroid injection to see if that helps calm things down.
I’ve been trying to get back into exercise after a long period of not being able to. I did pilates for years but found between the pain in my hands and the osteo in my knees, it hurts too much. I used to walk a lot too, but the osteo is also making that difficult. I guess the hardest part is trying to work out what I now can and can’t do. I’ve just turned 44 and always considered myself healthy until last year.
My rheumy mentioned biologics before but wanted to try DMARDs first. I’ve got a follow up with her next month, so I’ll ask then if things don’t settle down.
Thanks for replying. They stopped the mxt because I have asthma and it kept triggering attacks. Plus I hated being on it as it left me feeling like a zombie.
I’ve been on sulfasalazine and hydroxychloroquine since January, with them being upped to the maximum dose in March. May through to July were great months - I barely had pain in my hands, which was a huge relief because I write for a living (although I mainly use dictation software now to spare my joints).
I’ve been giving meditation a try recently, especially before going to bed, and that definitely helps to relax me. Warm baths are great too.
Guess it’s a case of keep on keeping on, and trying to find things that work for me. And as you say, nothing with this disease seems to stay the same for long.
Osteo in your knees eh? At 44? Quite possible of course, but a little suspicious to my mind, when someone also has PsA anyway.
But hey, I guess questioning the whys & wherefores can wait. However I have pretty bad OA in my knees which is secondary to PsA, i.e. caused by long-term swollen knee joints. When the first big PsA flare hit I’d already been doing tai chi, if rather half-heartedly for some years. When I could not walk at all the tai chi went for a burton, but as soon as I could just about hobble, back I went with renewed zeal. It turned out to be a perfect exercise for me and I even learned how to safely navigate going down stairs using some tai chi principles. Might that be an option to consider? My 37 year old son does Tai Chi quite seriously and he’s in your neck of the woods so could I could find out about his class, could be close enough for you. One of the central tenets of tai chi is, or should be, ‘protect the knees’, and while the hands do get exercise, there is no need to put pressure on them. Plus many classes consist of people who are super fit and also some who have debilitating conditions.
Additionally, one of the things I have learned over the years is that the simple stroll in the park or a walk to the shop is, for us, effectively ‘medicine’.
Everything everyone else said. Joints that don’t move rust and “motion is lotion” We can’t stress this enough. You might also want to take the quiz at: Am I Having a Flare? Take it several time over several days (a week is about right) Even with good treatment, symptoms and how they effect you change from day to day (or for me hour to hour) hang in there!
Oh! Yes uncontrolled PsA can and frequently does cause OA.
Just did the quiz and got 10 points. Hmmm. For me this is not a flare, it’s always like this these days. These are very good, and simple, items on which to base a serious discussion with my rheumy.
I couldn’t hack how mxt made me feel long enough to see whether it activated my asthma. Which actually is a huge pity as it does appear mxt helps and it does appear even more importantly that mxt makes other treatments work better too. And thankfully the asthma for me has taken a back seat or even a long hike for some years now. Dreadful illness though isn’t it? I’ve had since I was 18 months old.
Is your max dose of sulfasalazine 6 tablets a day? I’m assuming so since you’re saying max dose. For me it didn’t do a whole lot until I hit 6 tablets a day though. The usual optimum dose is 4 tablets a day, hence asking.
Hopefully though the steroid shot will work for you, the beneficial effects can last several wonderful weeks. I’m also assuming since you’re in the UK, that’s the steroid shot that’s given in the behind. It seems to be an uniquely UK only approach to steroids. For me though steroids by tablets worked better but a significant number of people also love the UK steroid shot. And anyway long term steroid use causes other issues. And none of us need those other issues.
It does appear though you’re set for a decent discussion with your rheumy next month. They can’t prescribe biologics until at least two DMARDS have failed for you and then only if you reach the NICE guidelines on the number of joints ‘affected’. Check out the NICE guidelines. For me though I don’t think the NICE guidelines have actually ‘got’ what is PsA coherently enough. But since it’s the funding vehicle I guess it’s not there to ‘get’ a whole of any disease, really. I love our NHS wholeheartedly but it is also certainly challenging and faces such huge challenges too.
As for osteo issues - you’ll probably find it doesn’t sit in its own little box like it’s being presented to you presently either.
But definitely keep on keeping on. Being told you’ve PsA is quite something and it takes time to get your head around it. Hence the meditation, the lotion than is motion and lots of other ‘taking care’ of yourself stuff just helps.
Yep, I’m on 6 sulfasalazine a day, plus 2 hydroxychloroquine. Also statins for an inherited high cholesterol (heart disease is rife in the family), plus daily asthma meds. So many pills I rattle when I walk. Ha ha.
And yes, it’ll be the steroid shot in the butt. Hoping it will help to settle things down. If not, I have my follow up in a few weeks with the rheumy. If it is the sulfa that’s stopped working, that will be 2 DMARDS down, so I wonder if they would consider biologics - I know how expensive they are, which I guess is the main reason they’re reluctant to deal them out? Do love the NHS, though - I’ve had excellent treatment since before I was diagnosed last October with really supportive and understanding staff.
I definitely need to get moving more, exercise-wise - I was so much better at it before I got ill. Other than that, I barely drink, quit smoking years ago, haven’t eaten dairy for over 20 years, and eat very little processed sugar. Just need to get moving more now…
Hey guys, thought I’d give a quick update on my flare. So ten days ago I had a steroid injection in the butt, and so far it’s done absolutely nothing. I spoke to the rheumatology nurse yesterday and she said it should have done something within three days.
Now they’re talking about adding a third drug into the mix. I’m already taking sulfasalazine plus hydroxychloroquine, and now they want to add Leflunomide.
I just don’t know how I feel about it, especially because it means at least 2-3 months of waiting to see if it will work (again) - and I feel uncomfortable about taking even more pills every day. But then what’s the alternative?
The nurse did say if this doesn’t work then the next stop is biologics.
It’s just really frustrating - as I’m sure you guys know. Two months ago, I was starting to feel like I was getting my life back and now I feel like I’m taking a huge step back. But I guess that’s the unpredictable nature of this damn disease.
I’d play ball. Recommendation from NICE is that patients who have (3? can never remember) swollen / tender joints after trying & ‘failing’ 2 traditional DMARDs for 3 months each should then be considered for biologics. In NHS reality the path is usually a little more tortuous e.g. a longer trial than the 3 months, addition of or change to a 3rd DMARD etc.
It can feel like a conveyor belt but in my experience patience is likely to be rewarded.
I wonder if you could replace the two DMARDs you’re on with Leflunomide? I know triple therapy is a thing, but it doesn’t seem to happen that often. Personally I didn’t like Lef much but it works well for some. And I suspect it might prove to be more effective than the others you’re taking. However … (sorry for the twists & turns) … you don’t really want it to help too much if biologics are on the cards (I imagine). Hmmm. Your call!
Hi Sybil. Thanks for the advice. Playing ball definitely seems to be the way to go forward. I’m still learning but biologics seems to be the best chance at having a reasonable life with PsA.
As for replacing the other drugs with Leflunomide, I’ll talk to my rheumatologist about it - I have an appointment with her in just over two weeks. In the meantime, I’m just waiting to hear back from the nurse, who was going to speak to my rheumy and get back to me.
Conveyor belt is the perfect description! It certainly feels that way after months of fortnightly trips to the hospital for blood tests.
Just found this topic. I am also feeling like I’m in the midst of a massive flare. I’m on 15mgs of methotrexate & it was working really well. All my swelling was down and things were ok (physically anyway). Now I have swelling and pain back in my hands. Lower back pain (that’s new) and badly durning feet. I have actually had a miserable couple of weeks in truth. Massive return of fatigue & general feeling of very heavy limbs and just all over aching (if that makes sense)
Cam Methotrexate just stop working like that. Can the deseace become more aggressive as quickly as that. Can the weather getting colder bring on an increase in symptoms
Yes to all those things but also possibly you need a higher dose of mxt or another drug added to it. This disease goes up and down too, not just progessively worse all the time, please remember that. I used to think when it got worse, it was going to stay that worse. It doesn’t always.
don’t assume anything at this stage. Keep doing all the right things e.g. keep moving, get plenty of sleep, find things you can do that will cheer you up.
Taking Mtx alone is the first stage so if this continues, especially swelling, it is likely that you will be offered another traditional DMARD as well as or instead of Mtx. And if that doesn’t work then you may well qualify for biologics. At the risk of sounding like a raving masochist, I wanted the DMARDs to ‘fail’ because I was pretty sure biologics were required long-term, as was my rheumy. Mtx was good for me, but not good enough.
In short, you have plenty of reasons to be optimistic. However when I am exhausted and ache all over I forget what ‘optimism’ feels like. But we try, right? Don’t despair! When is your next rheumy appointment?
