Hi! I'm new to this site and hope someone can help me with this.
I'm 51, and 'think' I have Psoriatic Arthritis. My symptoms mimic those I've been able to find, but I would like a definitive answer.
My Dr's, those I've discussed this with, simply say; "Well of course you have arthritis, you're over 50!" When I ask what being over 50 has to do with it I get met with blank looks and excuses, the great brush off.
HOW do I get my GP, Pain Clinic Dr or Neurologist to take me seriously, test me for it or send me to the right Dr. to be tested?
I've already asked point blank to be referred, I've asked for blood tests and x-rays. What more can I suggest to get a test done to pin down what is actually going on with my body?
Thank You
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Nuerotyka69
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The only way I could do it was by having a private consultation with a rheumy who then wrote to my GP asking for a referral on the NHS so that he could ten do all the tests etc. Best £250 ever spent.
So, they’re implying that you likely have osteoarthritis as a result of ageing. There are three things there: it’s now understood that OA is not something that should simply be expected due to age, it’s also not ‘simply’ degenerative wear and tear, and OA and any kind of IA (inflammatory arthritis) are two different things entirely, requiring completely different approaches and with different long term considerations.
You don’t say what symptoms make you think you have PsA, but many people with PsA have completely normal bloods, and unless you have significant, permanent joint damage as a result of any kind of uncontrolled inflammatory arthritis, x-rays will not be helpful beyond potentially picking up any OA you may have. I had my first symptoms of inflammatory arthritis, that’s been labelled likely PsA, at the age of 16, following a very brief stint of psoriasis limited to my calf, and it’s taken 20 years and countless appointments to get a diagnosis in spite of typical, very obvious symptoms of IA. As a result, I have permanent joint damage, and it’s currently in 9 joints, as well as in my lumbar spine and sacroiliac joints. Because so many people with PsA are seronegative, i.e. they have normal levels of rheumatoid factor and anti-CCP, and sometimes even (almost) normal crp and esr even during acute flares, the only definitive way to diagnose that there’s an inflammatory arthritis at work is imaging: in all forms of IA, ultrasound of an effected joint will be definitive. MRI is also definitive, but less commonly used in the first instance, particularly for peripheral involvement. If you have symptoms of possible IA in your hips or spine, then an MRI is the best option to diagnose that. But for an ultrasound of my hand almost two years ago, that my GP freely admits she only did for the sake of completeness given my persistently normal bloods, I believe I would likely still be undiagnosed now. Even a rheumatologist had previously dismissed my symptoms out of hand on the basis of normal blood work. X-rays had revealed OA in a couple of joints, and they were happy to leave it at that.
Bottom line: if you think you have any form of inflammatory arthritis, then you need blood work in the first instance. Bloods being normal categorically does not rule out arthritis, however, so imaging is even more useful. As per Wobbies reply, if you’re struggling to get referred to rheumatology, and your symptoms are indicative of inflammation rather than OA, then a private consultation may be your best option.
Before you spend money on a private consultation (and the £200 is just the consultation, any tests cost more) have another go at communicating your concerns to your GP.
Like many others it took me a while to get a referral as symptoms were put down to menopause or age related osteoarthritis. In hindsight I would have been more assertive earlier.
So get a copy of your GP’s surgery complaints procedure - they all must have one - and follow it. Usually you will need to write a letter to your GP practice manager. You should make sure it is clear that you are making a complaint as complaints have to be taken seriously. You can complain about lack of treatment just as you would about the wrong treatment. And be clear about what you want them to do.
Hi I had the same problem it took me 2 yrs to get properly diagnosed with RA they kept saying it’s just arthritis everyone gets that etc so my advice to you is keep being a pain in the butt keep pestering them go down the road of depression anything to get them to listen to you . Only you no your body so don’t give up ring up dr tomorrow say anything to get a proper test my test came back normal for ages till I couldn’t walk I felt like giving up and that’s what I told them so good luck hang in there don’t forget NAG NAG NAG till they listen x
Are you in the UK? as your GP will usually order blood tests but even then a person with negative blood test can have RA and a person who tests positive may not develop the condition. Sadly there really is no magic test yet and you might ask for a referral but I'd not base any diagnosis on Dr Google. If I were you I'd keep a diary of how you feel and photograph affected areas and go back to GP and explain you don't want to be a problem but really feel unwell. I'd suggest that sometimes there is no definitive answer sadly its a " we think" diagnosis RA as it is one of those conditions that affects everyone differently but that doesn't mean you have to accept feeling horrid. So best of luck and don't give up. x
I was once told by a nurse at my gp’s nag nag nag the doctors. If they think you’ve ‘gone away’ the problem has gone away. And I agree with the ‘it’s making me really depressed’ (which pain does) statement. Use it, I was getting very down and when I mentioned I was desperate I finally got results of referrals from my doctor. Shouldn’t be this way I know but it’s the only solution sometimes to keep on at them making appointments, if you can get them. Good luck. X
I have to agree with other posts and say that polite nagging is the way to go first. Write down a summary of your symptoms and signs and go on asking for blood tests and perhaps an ultrasound of inflamed joints. Referring to the NICE guidelines (look them up and print them out, take them with you!) can often prompt action.
I have to admit, though, to shouting at one doctor who on my first encounter with him said that I could expect to have arthritis at my age. I pointed out loudly that I had painful swollen joints when I was in my thirties and would he please read my notes before jumping to false conclusions.
tricky one - possibly changing to another Dr. for an answer? I had to ask 3 Doctors 20 years ago and at the 3rd attempt it was recognised as RA immediately and I then was given all the testing. I was 43 - with a swollen finger joint which later turned into full blown RA on waking one morning. Good luck - it can take a pretty smart Doctor to have the right instincts to enable a diagnosis - but it shouldn't be so difficult as you have said!
It took me 20 years to get a diagnosis of PsA (in fact of any inflammatory arthritis) and I only managed that because I was living abroad at the time and had an excellent GP who actually listened to me.
Sadly i found the only way was to go private. GP comments included “I’m not referring you to a rheumatologist- you’re not bad enough” and “I’m sorry we haven’t found a ‘name’ for whatever you have”. It cost me £400 for the consultations to order mri and review the results plus £1100 for the mri then £200 for a follow up consultation then £600 for ultrasound and review after disputing the diagnosis of osteoarthritis. I was right and was finally diagnosed with inflammatory arthritis probably rheumatoid. Hydroxychloroquine did nothing, sulfasalazine greatly reduced the symptoms.
Transferred to an NHS consultant. Because paying £200 every 3 months for someone to write a prescription for sulfasalazine is taking the p. About to see private consultant about leg pain, numbness and dizziness. My nhs consultant is arrogant, rude, doesn’t listen, and i suspect not very competent after ignoring clear indications of atlantoaxial subluxation in someone else. I’m expecting another bill for £1000+.
In my experience, it's the squeaky wheel that gets oiled first. Document all symptoms, photos are a good backup, research your condition, present your gp with the facts, and persevere. Don't take no for an answer. Good luck!!
Psoriatic Arthritis -- A chronic inflammation of the skin (psoriasis) and joints (inflammatory arthritis). It usually causes the joints to become swollen, stiff and painful.
I had a full bone scan in 2010, " hot ' spots showed that the odds were good that I would have arthritis in my knees, back & ribs. In 2012 , the knee started to hurt.
My Gp wouldn’t listen either I went privately and was diagnosed I now see the same consultant on the NHS it’s worth the money just to get the peace of mind and understand what is happening to you. Unfortunately there are many GPS who don’t listen or take you seriously once you hit a certain age I was continually told “of course your tired run down aching in pain always unwell your a full time working mum with three kids.” I wish you all the best you know you ur body .
When my symptoms started in May 2020, my GP referred me quite quickly after a telephone consultation. I saw a Rheumatologist some weeks later who decided I had reactive inflammatory arthritis probably based on an earlier arthritis in 2011 that did get better after a year or so (drug free remission following 9 months on methotrexate). I’m sero-negative too. After the initial consultation, my symptoms started to decline quickly and lots of joints joined in the action. Despite this the rheumatologist suggested it was still most likely reactive, but agreed to see me at a routine appointment quite a few weeks down the line. I didn’t agree as i had classic Rheumatoid Arthritis symptoms so I got an online private appointment with another Rheumatologist (£200) who diagnosed RA. I changed my NHS Rheumatologist just to get started on treatment (and I didn’t trust the first one who didn’t even offer a steroid injection! Happily RA probably in remission on 20mg methotrexate, but still relatively early days. So you could push your GP for a referral or, if you can afford it try the online private route - the private diagnosis convinced my GP to refer me the a new Rheumatologist.
I went private for initial diagnosis then he referred me back to the NHS so I didn’t have to pay for private blood tests etc. It didn’t work in my case ( maybe because of covid) and I still had to wait another 20 months of nagging the GP to see an NHS consultant before I could start RA treatment. Luckily before then I was mostly ok with steroids.
So psoriatic arthritis comes under the spondyloarthritis, I have attached the referral guidelines. If you meet the criteria your entitled to a rheumatology referral
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