I have had hints of stiffness in my left had 3rd finger since January but in recent weeks it has become much more troublesome. I have swelling below the PIP joint but not in the joint itself as far as I can tell. The finger is very stiff and painful to move first thing in the morning but I can get it going with hot water and gentle manipulation; so far the range of movement has not been restricted during the best part of the day. My first thought is that this is probably PSA but I also have various pains in my arm. Here are my questions that I am hoping you can help me with:
Is it possible that PSA could attack the MCP joint without affecting the PIP joint? I assume it is.
Does anyone have any experience of arthritis like symptoms in the fingers that were brought about by muscle problems in the arm?
Treatment wise I am on MTX and this has worked well overall but hasn’t prevented dactylitis developing altogether with one toe being significantly affected since my treatment started. I’m not due to see my rheumy again until February.
Sadly @saxophonics the answer to both of those questions is yes. PsA can attack just about anywhere it pleases and when it pleases. It’s not logical in its approach and doesn’t need x to always happen before y does etc. It also loves to mess with tendons and ligaments so things like golfer’s and tennis elbow are very common, along with issues with the achilles tendon and plantar fascitus (spelling?), bursitus etc. It doesn’t just always only affect joints either.
Interesting you should mention tennis elbow as I had a session with a physio who suggested that as a cause of the problems in my arm. So far my experience with this disease has been finger and toe joints. Perhaps it is becoming more wide ranging. Thank you for the quick response.
I had extensive involvement of the joints in my midfeet, while my toes escaped with no problems at all.
My experience with muscle problems was cramping (at night). The joint problem was in my feet, the calf muscles would get painful cramps. With treatment that disappeared. I don’t think the calf muscles caused the problem in my feet. I think the tendons/muscles sheath in my calves were inflamed just like the joints in the feet were.
When your finger is having a particularly bad day, take a picture to show your doc.
My index finger of my left hand was very swollen for a good six months before I saw the Rheumatologist. Before that it was the tumb of the right hand but that went down again. Both are always sore weak & stiff now so that would suggest there is permanent damage there. My feet hurt but mostly they sting & burn without swelling. Swollen fingers are a sign (one of many) of PsA & partly how I was diagnosed. Pain without swelling/swelling without pain. Is it or isn’t it PsA. That’s a game I play every time I go and see my Rheumatologist to be honest. It’s a tricky wee deseace because it hides sometimes
Same here. It would be handy to have period of complete remission to find out what my ‘normal’ was like. Then even if it didn’t last I reckon I’d play the game a lot more forcefully if all this came on overnight.
Hmmmm, sounds familiar…
I don’t have as much of the stinging and burning as I did before I started Enbrel. But I do believe that stinging and burning was a signal damage was happening. And there was some swelling, but in my case it was very subtle. I really only noticed the difference after I started Enbrel and my feet and hands looked skinny again!
PsA is a very sinister disease…I had been diagnosed for years with “mild” disease. Well, mild turned into severe one day. I really don’t know for sure when all the damage was happening. It seems to be mostly my feet, but my spine is screwed up, especially in my lower back, and my hands don’t look so pretty, either. But, from what people here tell of their situation, I feel fortunate and thankful Enbrel works for me (so far—four years and still going strong).
The dactylitis you think you ‘might’ have is there and it’s real and it could potentially be causing damage to your joints! Stay on top of this with your doctor. It’s not fun having the PsA symptoms, but they can be controlled with the right biologics…the damage can’t.
CI find this really frustrating if I’m honest. I’ve mentioned the fact that my feet burn about 3 times now. It’s always followed by the question that I dread. Do you have swelling. Well no I don’t so what are we saying here Mr Dr. Are we saying it’s not important or are we saying it’s not PsA. Or are we saying it’s all in my head? This is partly why I don’t really communicate as effectively as I should with my Rheumatologist and I have a really very good one as well. That said if I do present with any new pain then my Rheumatologist will never not check it to see if there is anything going on. Without swelling there though, they are largely taking your word for it
So agree with your frustration @Su26. The doctors seem obsessed with seeing ‘swelling’ and also seem overly interested in ‘joint’ pain as against other pain. Personally I think that’s NICE’s fault as its funding for meds is all based on x number of joints. When that happens I initiate a discussion about ‘enthesis’ and the fact that it’s almost always a rather special feature of PsA, which distinguishes it from other types lots of times. And I ask them to remember the fact that the synovial fluid lubricates the lengths of tendons too and not just joints. And that it seems that inflammation effect on synovial fluid is what can also cause pain so then it can’t be right to be so obsessed with just swelling and indeed just joints as in the forearm where people can get tenosynovitis isn’t at a joint. I’ve found that usually makes for a more coherent consequent discussion, going forward.
Also given the inflammation and the damage it can cause lots of places, that can also ignite a neuropathy which can be hellishly painful too, of the burning type you mention. Not to mention also the issues that bone spurs and fusing joints can cause too.
I’ve found that the more cogent medical facts about our disease that I can mention at appointments, the better the quality of the both the examination and following discussion about treatment options.
I’m about to have a review a on Monday with my doctor which is obvously why I’m presently so ‘fired up’. I actually think my consultant is excellent but I’m already anticipating being sort of ‘palmed off’ about certain issues and I’m really determined not be. I’m three months on benepali and presently only capable, if I take up to three Tramadol per day, which in my mind says it isn’t working. And I’m so just bored of things not working and of new issues persistently arising. It’s now decided to mess with my left foot and knee, which it never has before. My lower back and hips certainly have almost felled me these last three months too. Again previously they were only niggles.
This whole disease is so blinking frustrating isn’t it and we so need our doctors not to make it even more frustrating. The only way I know how to do that, is just ‘argue’ (nicely) the toss with them persistently. For every question about swelling and joints, I simply ask can we discuss ‘enthesis’ and is there any new research on that yet which measures it better!!! And if not, why not!!! And so on. It’s all not in our heads either, of that I’m 100% certain.
It’s a vexed issue, possibly particularly in the UK, for the reasons that @Poo_therapy mentions.
My take on this is that PsA can be painful and problematic, even when well controlled, i.e. when the potential for damage is indeed limited as much as possible. But of course then the question arises as to whether it is sufficiently well controlled and that is a question which is all the more important for those on the first line of treatment, as you are.
I’m fairly confident, much of the time, that Humira continues to work for me. So the main thing I’m after at appointments is an expert take on what is happening to my body and why. My feet burn too, it feels as if they have electric elements in them that spark up in a second, radiating heat. Common sense, which admittedly doesn’t always help when trying to understand our bodies, suggests that a feeling of ‘vibrating heat’ must be inflammation. It’s just something I’d like to discuss for 5 minutes rather than being told I’m fine & that’s it. There are a whole host of other things too that fox me on a daily basis.
I know that swelling is a red flag. Though heaven knows it’s one I waved flamboyantly for nearly 2 years without even getting a diagnosis. But anyway, once through the door I was a ‘simple case’: high inflammatory markers, big swelling, anaemia of chronic disease, psoriasis. All of the above disappeared pronto once on biologics. Having been that ‘simple case’ I can see the problem for those who do not present with all those things and also for me with the nagging problems I still have that may or may not be signs of creeping damage.
They say that ‘function’ is the way to go in discussion with rheumys. It’s easy to overlook (deny) how much pain and stiffness etc. affect our behaviour and our capabilities. I absolutely squirm at the thought of sitting down and listing the things that PsA renders more difficult or impossible. But it’s something that has to be done and might possibly initiate a more productive discussion with your rheumy.
And there’s a straight question to ask, I think, and that is ‘are joints inflamed by PsA always swollen?’ I’m damn sure they aren’t. And of course some joints never look swollen regardless of what’s happening e.g. spine & hip.
When you are first diagnosed it’s difficult because you don’t fully understand anything. You don’t understand the condition & you don’t really fully understand the medication. You kind of accept a lot of things and just think -well fine then ok there is no swelling so it must all be ok. Then you can’t really shake that - but I’m still in a fair bit of pain for someone whose condition is now being managed. It came as a major shock to me in being told I had this as I’m sure it did for everyone. I was (and still am) a little traumatised. In such a short space of time I have went from someone who was an extreamly socialable
marathon runner to someone who can’t remember a day without pain. The two things that helped my mental health more than anything else were running and playing my guitar. I can’t really do either anymore. I just didn’t see the day coming when I would be sitting in my bathroom injecting myself. I am also really fed up with new pain. I would just really like to know if one can co exist without the other pain/swelling & why the hell my feet hurt so much. I would have thought that heat/burning would mean inflammation of some kind. I have a brilliant Rheumatologist and I feel like I’m able to talk to him. He checks every new pain that I say that I have & offers solutions when one exists but without swelling we don’t particularly progress with it. Methotrexate was working very well but I do have swelling again now. Very fed up at this point
One thing I’m thinking is that going from being a marathon runner to … well, the current situation is a big jump. And it’s a change that could lead you to thinking it’s all gone to hell in a hand cart. But hang on in there. I never could run very well but in my 40s I could beat people half my age on the squash court. I could (or at least I did on one occasion) stop 16 year old Sports Studies students getting goals past me in 5-a-side. But … these days I walk, I swim, I work on our doer-upper … might be worth investigating some ‘lesser’ but nonetheless very beneficial exercise options … though come to think of it I bet you are already!
I totally understand that you need more input from your rheumy, but management strategies help A LOT too. Tai Chi has always helped the burning feet. It’s odd … they hurt more at the beginning of a session but thereafter the burning subsides, then it disappears and then stays gone for a day or two. The right kind of movement often quells inflammatory pain.
Oh, and emphasise that swelling to the max at your next appointment. Is one due soon?
At Su26, please ask your rheumy why doesn’t it progress on just pain alone without swelling? Pain obviously is the more incapacitating, swelling without pain (which I get alot) isn’t at all incapacitating for me. It might be a conundrum with shoes etc, but it doesn’t stop me walking or doing.
I, probably like most of us, am solely interested in maximising my capacity. I truly couldn’t care less (mostly) how swollen anything is, provided I can still do. What stops me doing is pain, not swelling. It’s for me rare any swelling means pain. And mostly for me anyhow pain means only significant pain along tendons rather than at joints too. Hence my irritation and frustration about a joint count meaning something, when for me it truly doesn’t, other than to tick a box someone else wants ticking, usually only for funding meds that can actually reduce my pain, rather than any swelling. Provided they’ve managed to quell my stupid immune system from just attacking me in the first place. Which is presently for me rather more than hit and miss than I would like.
For me it’s time I challenged lots of the present celebrated and villified ‘solutions’ as none of those ‘solutions’ are actually coherently ‘solving’ much for me. Might do initially, but they too soon run out of any steam. And it’s labouriously tedious wasting vast tracks of 12 weeks blocks of time,repeatedly, waiting for things to be deemed a failure too.
Guess it’s time I and maybe you asked our respective ‘brilliant’ rheumatologists to step up now and just be properly ‘brilliant’!
I hear your frustration. But ultimately it’s the swelling that will lead to joint damage. My elbows have hurt for quite some time with no swelling. Range of motion is fine. My doctor doesn’t worry about them. But my finger joints that swell up and my knees, etc? Well, that’s a different issue. That’s a sign of ongoing joint damage.
This has been very insightful discussion, and I thank you all for your contributions. I am beginning to understand a little more about the disease now. In my case, I know my symptoms are mild (just fingers and toes) but I am concerned about the future. Given that much of my work depends on my fingers (i.e. musician / music educator), I have started to think about what I might do instead should it be necessary. I’ve even started to feel that this inevitable and just a question of time. That’s a big shift from where I was when I first had my diagnosis. At that time I was relieved to be able to name the problem and was confident in the treatment offered (MTX). This has been helpful without a doubt but doesn’t seem to be containing the disease. I’ve since had burning in the toes leading to dactylitis. And even over the past week of this discussion, my finger stiffness has got worse. And what’s that niggle in my neck that I hadn’t noticed before? Is that PSA too? Clearly I am not the only one who questions every little ache or pain.
I see my rheumy every six months (UK). Strangely, new symptoms appear just after I have seen him and so there is a long wait before the next appointment. As I am self-funding, however, I could see him before my next appointment in Feb. Would it be worth it though? I’m not sure. Either way, this discussion has given me a better idea as to what I should be talking about.
I would like to ask you about drug treatments in the UK. Currently I’m on MTX 12.5mg weekly. Should I be asking for a different approach? If so, what is next down the list of usual treatments?
NICE protocols recommend that patients try 2 traditional DMARDs (i.e. Mtx, Sulfasalazine etc.) before being considered for biologics. A ‘fail’ of the trad. DMARDs requires ongoing swelling of 3 or more joints.
Fingers are tricky because osteoarthritis in finger joints is so common. OA can be hereditary, or caused by ‘wear & tear’ or, indeed, a result of PsA’s attack on joints. The tricky bit is that once the PsA is under control there’s no real answer to a legacy of osteoarthritis, and if that happens we get the frustrating ‘it’s only OA’ refrain.
If Mtx isn’t preventing stiffness and swelling by now I think you should see your rheumy as soon as possible. You can’t be expected to assess what is happening in your joints by yourself. It may well be time for a change of treatment and If you qualify for biologics then it’s best to start them as early as you can in order to prevent damage of any kind occurring. At the very least you may get a change to, or addition of, another trad. DMARD which might do the job … and if it didn’t you’d have satisfied the ‘2 DMARD’ part of the protocol for biologic therapy.
Yes I do know. But my issue is that restricting treatment to only issues of possible (or even probable) joint damage doesn’t actually increase my capacity or maintain it. Maybe it’s a UK only thing though, as funding for our meds here in the UK is based on affected joint counts and if you don’t hit the magic number of affected joints you don’t get the drugs that can help more. I’m lucky that I have, but the chosen drug is doing diddly squat presently capacity wise. So on Monday we’ll begin the ‘negotiations’ to get a better drug to help my capacity issues and no doubt we’ll be back to the wretched joint count issues which so frustrate me as from the start my issues are mainly enthesis based rather than joint based as it was pure luck in June my joints and enough of them swelled nicely for my consultation. And that’s besides the fact my rheumy was always gunning for me to be biologics but she can’t get the funding for them unless I’m hitting various affected joint counts. Sigh…
So my frustration is the persistence in analysing the effects of PsA on joint counts when it’s more than that a lot of the time.
I’ve just spent the morning researching our drugs and how they work to sort of gen up for the discussions on Monday. So for example enbrel is a ‘circulating receptor fusion protein’ whereas humira is not, despite the fact both are Tnfa inhibitors. Whereas Cosentyx is a Il-17 inhibitor etc etc. So if they don’t know which bit of me is causing the inflammation ('cos they don’t as they can’t yet generically tailor the drugs to suit what my body is doing against what yours is doing,) it’s back to this sort of blind guess work that drives me batty due to the fact it’s so persistently vague.
Hence me wanting rheumatology and obviously mine in particular to step up and be brilliant!
And huge apologies @saxophonics, I didn’t mean to hijack your post wittering on about my own issues. @Sybil explained the next steps far better than ever I could and my ‘wittering’ sort of explains the ones after that should you be unlucky enough to get there.
Can I ask why you’re self funding? It’s just that the NHS is actually pretty good at treating this coherently for little or no cost. And self funding biologics is big money - I think my present one costs around £800 or a bit more for one injection and I presently inject every week and that’s a lot of money over my 12 week trial period, more especially as it hasn’t worked! Also I live in Kent but my rheumatologist is in Bath and the NHS funds that too. Not my travel cost, but going out of trust.
Many thanks for this info and for the encouragement to seek further professional advice. The OA question was discussed at my first rheumy appointment as I had already had two joint x-rays by that time, both of which came back as suggesting osteoarthritis but this was firmly dismissed by my rheumy who scrutinised the images and said there was no sign of wear and tear. That evidence contributed to his PSA diagnosis, along with a history of psoriasis, albeit very very mild. Now I have a clear sense of where treatment might go and that is invaluable. Thank you again.
My rheumy visits are self-funding but my drugs are provided by the NHS. It seems to work well for the most part although my surgery sometimes make things less simple that I think they should be. I initially set this up as I wanted to see a consultant sooner rather than later, for my initial visit that is, and I had a particular rheumy in mind who had treated someone in my family. I have since stuck with the arrangement but may go back to NHS at some point. For now though, I am prepared to pay for a twice yearly appointment.