Hi All, I am looking for your expert opinion please. I have had intermittent small joint pain and back/pelvis pain for about 10 years. My blood work has always come back negative. My aunt has had RA for the past 20 years and has suffered badly with it. About a year ago my GP ran some more bloods as my finger joints started swelling and my rheumatoid factor finally was high (not sure by how much). She referred me to a rheumatologist as she said with family history and joint swelling it appeared to possibly be RA. When I saw the rheumatologist however she said it was not RA due to my top finger joints hurting and the pain in my hips/pelvis. It was more likely to be another form of inflammation possibly psoriatic arthritis as I have mild psoriasis on my scalp. I have just been on anti inflammatory meds for the past 4 months and am awaiting my next appointment. The joint pain is now getting worse and it is now in all my finger joints including base joints near thumbs which are really bad. My toes are throbbing, again joints closest to my foot. Wrists and ankles are also sore and stiff. The only thing the anti inflammatory meds seem to have calmed down is my sore back and pelvis. Sorry for the long post but I am wanting your opinions on how your RA started? Which joints? Did the joints at the ends of your fingers swell and hurt? I'm not sure why the rheumatologist ruled out RA immediately with no X Ray's or real examination of my joints?? Are the joints at the end of fingers and back/hips/pelvis less likely to be affected with RA?? As you can see I am very confused and would like some opinions/experiences before I go back and see the rheumatologist again. Thanks for reading xx
RA or Psoriatic arthritis?: Hi All, I am looking for... - NRAS
RA or Psoriatic arthritis?
Hi Katt,
I was diagnosed with R A a year ago after generalised hand, elbow, shoulder and hip pain and feeling unwell. The hand joints were already knobbly due to OA. Mostly the hand pain was in the knuckles and palms. I was put on MXT. My bloods have always been negative. A year on and I'm not much better but the pain is now only in my lower back , pelvis, buttocks, thighs and knees. A lot of it is tendon pain rather than the joints. I don't have any swelling. Not long ago I discovered small patches of what looked like psoriasis on my leg (something new!), showed the rheumy and he said that probably it's now Psa. There is RA and psoriasis in my family. Apparently the spine, hips and lumbar area are less likely to be affected in RA .
I am now on high doses of NSAIDs plus MXT with a review in a month. The NSAIDs were great but now seem be losing effect. He mentioned possibly reducing the MXT as its not always effective in Psa.
Wait and see! I spose if the NSAIDs aren't much good they might consider biologic maybe Enbrel .
I can't give any specific advice. It's difficult because everybody's experience of this disease seems to be different,
I hope you get a definite diagnosis, but it might take time!
Hi there,
a history of psoriasis or current psoriasis (even if quite mild) is always an indicator of possible psoriatic arthritis as far as I know.
I have PsA and it started in my knees and wrists. I've never had the classic 'sausage digit' symptom but the joints nearest my nails on fingers and some toes do get inflamed and again I believe that is typical of PsA. To be honest PsA can affect any joint and as it causes enthesitis (inflammation of the points at which tendon meets bone) it can be difficult to know what it's up to!
I'm pretty well these days after an appalling time way back in 2012 when I was diagnosed. I hope things get a whole lot better for you too, whatever the final diagnosis turns out to be.
What treatment are you on Postle? Just out of interest,
Hi Downtime,
I'm on Humira and Mtx. Without swelling it can be difficult to qualify for biologics ..... or is it, hmm! Thing is the criteria are a certain number of swollen / tender joints. (Think it's 3). I have always wondered about that '/', I think joints that hurt when pressure is applied may just qualify without swelling but I'm not sure. Plus there's a few other things including patient's own assessment of how PsA affects them and 'function' is very important. I thought I was doing okay till I was given a checklist of how PsA affects my ability to do a whole range of tasks, thinking about the items and completing it was an eye-opener.
Thanks for your replies. I have read that they often get treated the same way. I think it is more frustration that I was due a follow up this month with the rheumatologist and have been told that they are about 2 months behind and the NSAIDs are not really working plus my fingers are turning outward and bending now xx
Sacroiliac joints are classic for spondyloarthritis (rather than RA), of which PsA is one type. Also inflammation in that top joint of the finger (but not in other joints) is also classic for PsA. And achilles tendonitis, and plantar fasciitis also are a fairly good hallmark for spondy rather than RA. The sacroiliac and low back pain (if judged by the rheumatologist to be inflammatory and not injury related) plus the finger tip joints plus the psoriasis (which doesn't have to be dominant) all add up quite nicely to be more likely a spondyloarthritis rather than an RA type of inflammatory arthritis. The treatment is a bit different for spondy than for RA, as DMARDs don't work nearly as well (and don't have a disease modifying effect) on spondy, though often MTX or SSZ will be tried as they can help with peripheral joints (those fingertips). Make sure you tell the rheumatologist what has been helped and what has not, as it sounds like you need to discuss other treatment options.
Just a thought though - have you been taking the antiinflammatories regularly and at full dose? Taking them just "when needed" isn't usually enough to knock spondyloarthritis inflammation and keep it under control - they do need to be taken regularly as prescribed to build up and have a decent effect.
Despite doubts about the effectiveness of DMARDs for controlling disease activity in PsA, they are almost invariably given, aren't they? I think that is partly because the research may be mounting up but isn't conclusive (and anyway many people with PsA do feel better on DMARDs) plus of course the NICE criteria for biologics requires trying and failing 2 or more traditional DMARDs.
I'd be a little wary of a rheumy who wanted me to take regular NSAIDs for any length of time for PsA. The protocols may be a little different with AS but I think with PsA the anti-inflammatories are just a starting point for pain relief and to knock out a little inflammation, I don't think they really can control the disease at all.
I think its more about NICE criteria and trying cheaper meds first. In other countries biologics get used much quicker than they do in the UK, though having said that, some people (especially I think those who also have inflammatory bowel disease) do get quite a lot of relief from SSZ, and those with lots of peripheral disease get relief from MTX, so its always worth trying those ones first.
Hi earthwitch
Thanks for your comments. I was originally put on Naproxen but did not get on well with those so GP switched to mefenamic acid which I am taking daily but my GP has told me she will only give me a 3 months supply of these as I cannot be on them any longer. I thought originally that that would be fine because I would be back to the rheumatologist but now because of the delay I will run out before I am due back. They do not seem to be helping the pain in my small joint pain especially in my knuckles and middle joints. I don't seem to have much swelling though x
Maybe you could ask your GP if they would extend the Mefenamic acid a bit longer to see you through to the rheumatologist appointment? If not, make notes of how you feel and which joints hurt while on the NSAIDs, and then more notes about what gets worse (if anything) when not taking them. If you are getting any kind of relief from the NSAIDs then that is another point in favour of an inflammatory arthritis diagnosis.
Hi Katt
Initially I was told I had RA although sero negative. It has now been changed to Psoriatic Arthritis.
Mine started predominantly in feet then hands, wrists and spine.
Diagnosis was made following MRI scan of my feet.....apparently the bone erodes slightly differently in PsA. Also swelling of whole finger (like a sausage shape) usually indicates PsA as well. I only had little patches of psoriasis on palms of my hands and feet which I thought had been dermatitis. Fatigue, like RA, can be awful.
Treatment options I have been told by consultant are pretty much the same as for RA.
I am on Biologics and only now noticing relief with back pain.
Hope you get on ok x
Is swelling of a whole toe (big toe) also indicative of psoriasis. I have had this plus a rash on the big toe, with little blisters and an extremely painful nail tip and sides. The GP said it is athlete's foot. The chiropodist said it bears no resemblance to athlete's foot and definitely isn't but does not know what it is. I have photos of it. Also had a big thick scaly rash under arch of foot.
Obviously without any medical knowledge and without seeing your toe, I may be wrong, but this is what I think ..... swelling of a whole digit is a classic PsA symptom as far as I know. Nothing to do with psoriasis (unless you have psoriasis there so badly that the skin is starting to swell or something) but typical of PsA.
Thanks a lot. That is quite helpful. I am prone to thrush which can be very severe if not controlled. About 10/12 years ago, it also brought me out in severe urticaria (hives). The urticaria was controlled by antihistamines. However, when I did not take the antihistamines and the urticaria became really severe, I developed patches of crusty skin which I had always assumed was psoriasis (couldn't be anything else).
I was not aware that the swollen digit was classically PsA and, because of the rash, assumed the swelling was caused by psoriasis. I did not even notice it when it preceded the onset of my arthritis symptoms a couple of years ago but other people did and kept asking me what was wrong with it. The tip and side of the nail hurt like hell and I thought my shoes were rubbing because of my bunions, but the bunion on that foot is less severe than on the other foot. I could not work it out and as I don't have very good eyesight could hardly see the rash but everybody else could. The rash then developed into big thick scales under the arch of my foot. Talk about have to self diagnose! The consultant told me to get a firm diagnosis from the GP but I think all the GP is interested in is saving money.
The swelling of digits is called dactylitis or 'sausage digit'. Nail changes are also typical of PsA. I was diagnosed initially with PsA rather than RA almost purely on the basis of two manky (but not very manky) toenails. Since then the diagnosis is pretty much 100% sure. This site gives a useful list of PsA signs:
psoriasis.org/psoriatic-art...
It does sound to me as if you could do with a referral to a rheumatologist. If your GP is floundering then a referral to a dermatologist might be another route. According to NICE guidelines (those again!) dermatologists should be on the look-out for psoriasis patients who are showing signs of PsA and refer them on to rheumatology.
Thanks for all the info. I am seeing a rheumatologist but he wrote to the GP asking him to get psoriasis confirmed.
I will try to get a referral to a dermatologist (or find my own). The rash comes and goes.
I've long been thought to have psoriasis (about 10/12 years). It comes out if I let thrush run out of control.
Sorry to go on .... lol! But it seems a bit odd asking your GP to confirm a diagnosis of psoriasis. Dermatologists can struggle with diagnosing skin conditions and they're the specialists! Although I have PsA, last year's psoriasis-fest saw me going all round the houses .... skin cancer? Eczema? Alopecia Areata? Discoid Lupus? Fungal infection? And that WAS the dermatologists!! They finally settled on psoriasis. GPs haven't got a hope in hell! Push hard for a dermatology referral.
I think the breakthrough might come when you move from 'this is thought to be psoriasis' to 'this patient does have psoriasis'. (Though of course it may be preferable to have neither psoriasis nor PsA but something altogether milder .... but you deserve a firm diagnosis either way).
I think a lot of it is because the GP surgery has been so misleading. I had an onset of severe symptoms overnight and the GP did a few blood tests and relied on those to rule out RA. I showed them my swollen toe and the rash on it and told them of the long history of rashes which developed 10/12 years ago when I had persistent urticaria caused by thrush - the crusty rashes had been put down to psoriasis for a long time. RA runs in my family and my mother had it. I was thought to have an episode of it at age 25. The GP responded by showing me her psoriasis and said my rash was nothing in comparison. I know it is nothing much but I was trying to get a diagnosis and the toe swelling and rash started suddenly at the same time as the other symptoms.
The referral letter said I had aches and pains all over my body for a very long time which was a downright lie. The rheumatologist was very irritated by it. I think he could have referred me within the hospital but he thought it was about time the GP surgery did some work. They had not even done an x-ray though I had asked them for x-rays and ultra sound - and they told me to see someone privately and pay. I think I'll have to see a dermatologist privately because the rash comes and goes and you can't choose an NHS appt time. I would have done before but I was worried about them stretching it out like the rheumatologist I saw privately had done. I had three appts and he still only just got round to doing an x-ray. It may have been that he thought I could not afford the investigations as I was not insured but he did send me to his private gym and physio treatment would have cost me around £5,000. I saw my own physio then and she told me to get a second opinion because she was certain it was RA. The private rheumatologist first of all said it was gout and then maybe psoriatic arthritis. Again, though, the GP would not provide a referral letter, just wanted me to go and find a rheumatologist who would see me without one, so I was paying to explain my symptoms in a long-winded way and it was time-consuming. A lab he tried to send me to for x-rays told me that they had to do 8 at enormous cost - on both sides of the hands and feet. I think I must look like Lettuce Leaf - the x-ray goes right through from one side so I knew they did not need to x-ray both sides.
The link you sent had some v. interesting info. I have most of the symptoms of psoriatic arthritis but notably the end finger joints are less affected than the middle, the knuckles, the thumb base and the wrists. That seems to go against it. I get flashes of piercing pain that move around my hands and wrists and I have nearly screamed many times. However, I did have pain under the nails. Many tendons were also severely inflamed and enlarged - shoulder (suprasinatus), upper arm, forearms, wrists, fingers (where the tendon had popped out of the sheath). It was tenosynovitis and I had a nerve tests at the NHS hospital plus x-rays and ultrasound and an MRI (would not advise anyone to have an MRI on their hands if they have shoulder problems as it was hell). The joints were no inflamed but there was synovial thickening on the knuckes and finger joints and fluid on the wrists. It also says that uric acid is very high in psoriatic patients. Mine was off the radar but this is also caused by thrush which I am prone to. The private rheumy said "my goodness, that is far too high" and the NHS one said "corrrr".
The NHS rheumy said it was inflammatory arthritis immediately but was a bit miffed by the low blood tests but they are constantly rising. My hands were badly swollen, and my knees and elbows and strangely left leg.
My toe nail is visibly OK but there is a skin rash round the nail and the nail itself is very painful and so is the area of the rash. I did develop a scaly rash under the arch of my foot and it spread under my foot to the little toe. The GP said it could not be psoriasis because only one foot is affected so it must be athlete's foot. He then proceeded to look on the internet and found some pictures to show me that psoriasis looked nothing like my rash. Yet I have found a paper by a rheumatologist (Dr A V Camp)which says there are several types of foot psoriasis and one affects the big toe and the little toe of one foot alone. I don't expect a GP to diagnose psoriasis but they ought to be able to diagnose athlete's foot.
Sorry this is so long-winded ... once you start. Trust me, I have cut it down!
Many thanks for all your help and don't feel obliged to respond.
Oh my word! Overall impression is that you're having to do far too much work yourself. And that has many pitfalls. For example you don't have to satisfy every classic feature of PsA (or any other condition) to be diagnosed with it, just need a good diagnostician. So are you not actually on a NHS rheumy's books at the moment ......?
I'll message you.
I have had PsA since age 23, affecting all joints, mostly knees. A year ago RA came on apace, triggered, imo, by stress of my uncle's death.
My only bone / joint distortion is me right elbow never straightened from day1. With the onset of RA that has become worse, affecting my shoulder.
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