Hello everyone, so my husband had his second opinion with another NHS rheumatologist yesterday (same hospital), and I'd really appreciate people's thoughts on some of the things he said, as follows:
1) The pain, stiffness, heat and swelling across my husband's knuckles and proximal joints (both hands), wrists, feet and elbows (bilateral) are due to wear and tear (OA) in his thumbs (as shown on x-ray - we knew he has OA in his thumbs already), left knee and sacroiliac joint (see 2 and 3 for more detail)
2) The pain, stiffness, heat and swelling in both of his knees are due to the OA in his left knee (he had a meniscal debridement 15? years ago but he now has no cartilage and is awaiting an orthopaedic appointment, possible knee replacement). Only minimal cartilage loss in his right knee, ie good joint 'space'
3) The OA in his sacroiliac joint (due to injury years ago, treated with denervation but he is now overdue so it is painful) is probably also a cause of the bilateral pain in multiple joints
4) His Dad (now passed away) and brother both had/have RA but this is a red herring
5) Bilateral pain in multiple joints is common on OA (note that there is no sign of wear and tear in any of his joints apart from his left knee, thumbs, and right big toe)
6) The redness and swelling in his hands could be due to amlodipine (but not the pain or stiffness)
7) The rheumatologist implied that the pain is psychological so when my husband (incredulous) asked for clarification, the rheumatologist said "well, its somewhere between real and psychological". Not my husband sometimes collapses due to the pain and is unable to get up unaided the pain is so severe.
8) The rheumatologist did ultrasound of my husband's hands, although admitted he wasn't an expert and couldn't scan thumbs. He said there was no sign of synovitis/tenosynovitis or inflammation. I think he did power Doppler ultrasound to show blood flow (and therefore inflammation?) and muttered that the scattering of orange and red blobs was just blood vessels not inflammation but he didn't seem to be getting very clear images.
9) Based solely on him not seeing any signs on ultrasound, the rheumatologist concluded that my husband does not have RA and noted that he agreed with his colleague (who gave the 1st even more dismissive opinion). I tried highlighting that the symptoms were typical of RA (or similar IA conditions) and met EULAR criteria but he (patronisingly) said that he "doesn't have RA", that the EULAR criteria are "just a guide" and my husband "just needs to continue to be managed in the chronic pain clinic". He really did not like being questioned. When my husband said none of the NSAIDs he's tried (diclofenac, naproxen, celecoxib) or tramadol (or the mindfulness course) help with the bilateral joint pain he basically shrugged and said "Well I won't give you any of my fancy RA drugs without a diagnosis of RA" and "maybe you'll be back in 5 years with worse symptoms and we can review then"!
I really feel we are being completely let down ☹️ but I'd really appreciate a sanity check? We're thinking he should get another ultrasound but by someone who knows what they are doing? Sorry the post is so long (original post below for background).
Thanks x
*Original post below*
Hi, newbie here. I'm actually writing about my husband, he's 53 and has been suffering with bilateral joint pain for several years. The pain, warmth and swelling is in his hands (knuckles, thumbs, and mid joints of his fingers), knees, feet, and more recently his wrists and elbows and it is always there, sometimes more painful than others. He also has OA issues (sacroiliac joint [SIJ] pain and left knee pain - both related to old injuries and he is awaiting denervation for the SIJ, and an orthopedic appointment for the knee). The bilateral joint pain is now debilitating and he is rarely working (electrician), and when he does its agony. He had a private consult with a rheumatologist that was changed to an online appointment at the last minute (so no examination) but the Dr said there could be an inflammatory component so he needs an MRI. After a 12-month? wait, he had an NHS appointment last Sept but the Rheumatologist was awful - basically said my husband was wasting his time, didn't examine him, and focussed on the OA issues ignoring the bilateral pain. I am a medical writer so I know my way around medical articles/guidelines/etc and I have found nothing to suggest his symptoms are not indicative of RA, or at least an RA component. On the EULAR classification system he has "definite RA"! I made a formal complaint on his behalf (he is struggling to function because of the pain and extreme tiredness) and he is seeing another rheumatologist next week for a second opinion. He has asked me to go because he forgets things and gets flustered due to the fatigue, so I'm going of course.
He has been on different pain meds over the years - currently high-dose gabapentin + celecoxib, originally for the SIJ but the celecoxib is also supposed to be helping the bilateral pain but it isn't - he is in SO MUCH pain, I can't stress it enough. He's had naproxen, diclofenac, codeine, and tramadol previously and tramadol is the only one that gives him any relief but its not a long-term solution. He recently saw a medical student at the GP, who immediately assumed he was being treated for his RA!
My question really is are there any specific questions we should be preparing for the rheumatology appointment next week? Any tips on how best to deal with this situation (ie second opinion) would be much appreciated. I think we are both preparing for a fight but we also don't want to rub the consultant up the wrong way. All we want is some kind of treatment to help him function again.
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Are you saying a second Rhumatologist said it’s not RA? Because the RA meds sometimes like MTX are pence but more are hugely expensive and only available on the NHS. So then it’s finding a Rhuemy who agrees he has RA and then will see on the NHS. I think this is a dreadful situation being disappointing and yet if it’s not RA then what is it? Could you see a private GP even if to just think of other things in case it isn’t RA . The familial link is strong but in my case although my mum had it, my sister and brother don’t. I’m sure you’re at your wits end and I wish there was something else to add and I hope someone will come along and be able to suggest something else to help.
Thank you for taking the time to reply and for you kind words. We're considering all options at the moment. And yes, he said its not RA based on his (poor) ultrasound exam
It’s as others have said more down to bloods but you can be negative and still have RA. I’d just be a bit wary of reading and making a connection as I’ve a friend done that for past year. Told GP that the antibiotics for UTI and chest infections didn’t work so she was getting no better. For several months she’s told GP so they prescribed at her insistence more antibiotics , she had fatigue, aches and pains etc and then a small lump appeared. Both Urologist and GP told her nothing wrong etc, but still gave in to antibiotics. The GP saw the lump was then looked at it yet another blood test done and she has Leukaemia. It is treatable and now is feeling better so it might be worth just getting a more general medical opinion before a third RA. I hope it isn’t something else but worth making sure.
Thanks and sorry to hear about your friends diagnosis but glad she's getting the right treatment now. His symptoms are specific to his joints along with fatigue and brain fog (but this could be the gabapentin and/or poor sleep). Its been very helpful to hear everyone's thoughts so I think we'll try to get his bloods repeated/expanded (from memory I think they only tested RF and CRP) as there may be other clues now. We'll also see if he can get a private ultrasound by a sonographer to see what - if anything -is going on. Thanks again x
Good luck and ask about thyroid if not already done so, they routinely dont check all 3 bits so ask about T3, T4 and TSH and Pernicious Anaemia too. That makes the bones ache as well. No idea why though and my friend will be fine, never cured but controlled as no need for a Stem Cell Therapy. All good, but if only she had not assumed it was just an infection the GP might have got it earlier ! but who really knows, these days it seem a lottery with the NHS. xx
If it helps I never had an ultrasound but did get tested for ANCA and was positive so with bloods even if you pay for it ask about that too.
l was also sent a hundred miles to the royal free for a second opinion . The rheumatologist told me if nothing was found he would give up and discharge me . Fortunately it was found that l have a rare form of vasculitis. This was a life saver it’s worth the journey . Good luck .
You say you are a medical writer…so have you thoroughly checked that all the usual blood tests have taken place & that none of them indicate rheumatoid involvement? These days blood tests are very detailed…even years ago when I was first diagnosed I walked out of the rheumy professors office with my first RA drug.
Have you asked your GP to check any test results?
No rheumatologist is going to deny a patient Dmards …,,Disease modifying anti rheumatic drugs….if tests prove there is a chance it may be RA.
You must know the literature you read about rheumatoid arthritis is often very confusing. I have read literature stating that certain criteria is always present…& when I have asked my rheumy about it…he says it’s nonsense. …..without test results to back them up …no doctor will prescribe for a condition he doesn’t believe is present…..because RA drugs will not help OA.
I know you have all your hopes pinned on this next consultation…but do try to accept this new Rheumatologists diagnosis…..& if he also says it is not RA do take his advice who you should see next,
Thanks for responding. Honestly we don't want it to be inflammatory disease but also he is on the max drugs available for his OA joints (except moving to something like oromorph) and they are not helping the bilateral pain. Yes, as a medical writer I have worked in RA, psoriatic arthritis and other autoimmune diseases so I am probably better informed than lots of the public. So although his blood tests were negative (albeit about 2 years ago so they should be repeated) I am also aware that a significant proportion (~40%?) of RA patients are seronegative. So blood tests are a good indicator if positive but cannot rule out IA conditions if negative.
It is quite possible that you are actually better informed than some consultants. As an academic researcher working in the area of medical reasoning, I have been shocked by the beliefs of some consultants.
It has been clearly shown that most doctors don't understand statistics, probability and ratios enough to interpret peer reviewed papers.
Some work hard to keep their knowledge up to date, others not so much.
Had your husband had blood tests done? He is presenting as RA so bloods should confirm. These medics stick together. As I have discovered . Could you go privately? I had to go out of area (albeit next county) to find a consultant (ortho; not rheumy; my chap is good) who wasn’t discussing me on their tea breaks and subsequently gaslighting me. Gosh I feel for your hubby. Try the NRAS helpline for advice too. My rheumy used ultrasound and there was ‘orange’ inflammation all over the place! You need someone who knows what they are doing.
Thanks for your reply. He was seronegative on blood tests (see reply to Agedcrone above) but there were lots of flashes or orange and red on the ultrasound. So I think we'll look at getting ultrasound by a trained sonographer to see what is actually happeneing inflammation-wise
I had a really arrogant ultrasound operator who was explaining to a colleague (I suspect it was mansplaining!) that these colours meant there was inflammation. I thought good, it confirms what I have suspected. Especially as the colours were brighter in the areas where I had the most problems.
Then he turned to me and said there was no evidence of inflammation. 🤷♀️
Not true I have seronegative rheumatoid arthritis as do many on this forum. Normal CCP and rheumatoid factor. Blood tests aren’t everything and need to be used with the clinical picture. My CRP barely moves in a flare around 15 (range <5) at its worst with a significant infection it has only been 28!
Au contrare - I made the hypothesis that with the incapacitating pain, fatigue & inflammation he was experiencing I was surprised he didn't share his bloodwork results (RF, CRP, ESR) - high numbers indicating sero-positive RA. (Severe RA frequently presents as sero-positive.) Of course he could have sero-negative RA, but obviously the dr did not think so. I am a HCP.
See above response to Agedcrone. I think we'll ask for his bloods to be repeated - but seronegative RA can be just as severe as seropositive RA according to the medical literature
Absolutely, it often takes longer to diagnose because of lack inflammatory markers. In the past it was thought of less severe but this is no longer the case.
This is SO true . Thirty four years ago , at 48 , I was diagnosed with seronegative RA and told how lucky I was as this was the best possible diagnosis . Following years I have had ankle , knee and elbow replacements and my hands are deformed with twisted fingers , ulnar drift and fused wrists plus hammer toes . Later on the diagnosis of seronegative RA was questioned but not changed . I'm on methotrexate and sulfasalazine. CRP can go from 5 to 33 depending on severity of flare .
Must add I've never had the Rheumatoid Factor appear in any blood test .
"Rheumatoid arthritis (RA) is an inflammatory disease whose clinical phenotype largely depends on the presence of rheumatoid factor (RF) and anti-citrullinated protein antibodies (ACPA). Seronegative RA appears to be a less severe disease, but this remains controversial."
I have zero neg RA like yourself and so I agree with regarding numbers but you need to-do the tests so it can be ruled in or out.Sorry if I was misleading
From my own experience I know the pain while waiting for a S1 nerve block injection is extreme! And for myself effected my whole lower body,as nothing was in alignment.I hope that you can get some relief soon
Sorry to hear what is happening with your husband. I’m gonna go against the grain here and say keep pushing if you think something is not right (easier said than done). I saw four rheumatologists before being diagnosed as previous completely dismissed it. I had given up but a pain consultant and occupational health doctor told me to get another opinion because they didn’t think it fitted either. Thanks to them I got another referral and was eventually diagnosed with seronegative rheumatoid arthritis. My bloods barely move with inflammation markers. I only had mild synovitis on ultrasound which the reporter stated had “doubtful significance”.
My colleague has just spent 2 years going through something similar and recently was diagnosed with MS after a third or fourth opinion.
I knew something wasn’t right but was exhausted fighting the system. If your husband thinks the same do what is right for you. I say this as an NHS health worker who knows the system.
It hasn’t been plain sailing since then either. My rheumatologist insisted I was well controlled, I could barely walk had to take taxis to work if I could work at all. Kept sending me to physio saying I was fine. I eventually wrote a letter saying how I felt dismissed etc. She called me and we went through some things and she decided to order a nuclear scan (I can’t have an MRI). To say I lit up like a Christmas tree is an understatement! I then got put on a Baracitinib and have improved so much since then.
I’m not saying he does have RA but it’s important you feel you have done everything you can in your power or you will always have a niggling doubt.
Thanks Karen12. I'm sorry you had such a long path to getting treatment that helps but so glad you have now improved. Like you, we don't have any choice but to keep fighting. We know it might not be RA/IA but we have to be certain, given the pain levels he is experiencing. He was an active, healthy bloke working full-time (self-employed) until a couple of years ago and now he feels broken. We might have to try to get a private consultation as we live in a remote area with only one 'local' hospital (60 miles away)... but we don't have much spare cash now he's not working (I doubt he's eligible for any benefits because of my job) so its a vicious cycle. Thanks again for responding x
It sounds like you need to feel listened to rather than just dismissed. Having had lots of patients in tears because previous professionals have been unsympathetic I understand this. I am unfortunately seeing it a lot recently due to all the pressures the NHS is under but not excusing it at all.
I was very lucky to have a very supportive GP who also felt they were wrong and was happy to send me for as many opinions it took. She offered to send me to a different hospital but as I couldn’t travel far I declined. She actually put “needs someone with fresh eyes” in her referral.
could this be a case of some confirmation bias on both sides perhaps? There are many other less common types of inflammatory disease than RA and bloodwork doesn’t always reveal which type so good ultrasound performed by someone who’s job it is or MRI are often required to give a correct overview. For such generalised pain I’d favour MRI. But also, just because close family have RA it doesn’t mean your husband’s is the same. It could be a different type of inflammatory arthritis of a more systemic or other type.
Whatever, I don’t think a true second opinion can easily be gained from a rheumatologist in same hospital as the first because they tend to stick together. But anyway there’s no excuse for a dr to be dismissive or imply that pain is psychological without a very good grasp of psychology themselves ie also being a qualified clinical psychologist or psychiatrist.
If severe OA rather than RA was cause of such widespread pain then I’m guessing it would likely be referred from your husband’s spine. I do have quite severe lumbar and cervical OA confirmed by MRIs and I do have pain in hands, feet and knees. But then I also have systemic sclerosis/ scleroderma (rare and seropositive) and Sjögren’s and Ehler’s Danlos Syndrome. It’s taken many years to get all of these diagnosed correctly. None of my family have been diagnosed with autoimmune diseases although my late dad had gout and diabetes and my late mum may have had Lupus and almost certainly had Ehler’s Danlos and my gran probably had PMR.
This doesn’t really sound like my OA but pain is very subjective - it could be something rare like a form of Vasculitis perhaps? If your husband feels it isn’t OA or a chronic pain syndrome such as Fibromyalgia then good MRI imaging would key and also bloodwork for rarer conditions such as Vasculitis.
Thanks OldTed60 - that is really helpful and a lot to think about. Sorry also to hear it took a long time for your diagnosis. Our friend (a retired physio experienced in IA/OA/etc) also thinks the rheumatologists would be biased being in the same hospital so she suggested taking the hit and getting a private consult in a different hospital further away.
You’re welcome. I have been down private route as one off previously done years ago and then again last year. But I’m in Scotland so chose this because we can’t get referral for second opinion out of area on NHS - let alone to England. No regrets for either although once sought a private second opinion locally and the old chap was a total waste of money and time as he couldn’t even interpret my blood test results -so not always the best way.
In my case though I was incredibly careful to choose experts in my rare rheumatic diseases and selected two renowned experts in knowledge that a) I was already diagnosed with Sjögren’s by lip biopsy and b) my local team would have no choice but to heed their expert wisdom. So research who you see with good care and try and find someone who can switch your husband to their NHS list if the diagnosis makes this necessary. So if just RA/ IA then most decent rheumatologists are used to diagnosing and treating but if something rarer such as Sjögren’s, Lupus, Vasculitis or Myositis or scleroderma then you really need someone who does primarily NHS and can think outside of the box, run expensive, less common tests and who specialises or knows a lot about which ever of these they suspect.
In my case I have an excellent rheumatologist but her specialism is Lupus and RA - not scleroderma or Sjögren’s. So she initially took her lead from the Sjögren’s expert I saw first in Swindon.
Then, at both women’s advice, I travelled to London last year and saw one of World’s leading authorities on systemic sclerosis/ scleroderma and he diagnosed me “unequivocally” with systemic sclerosis then and there. I was already on the main treatments but he advised on important organ monitoring. It’s helped knowing that none of the local NHS team would dream of refuting a word he said as he’s studied this disease for 40 years and Royal Free is one of the World scleroderma centres. Also I didn’t have to pay for any tests as my NHS rheumatologist had all these forwarded to him. Best of luck!
You clearly aren’t happy with the diagnosis given. I would gather all the results, including: rheumatoid factor, anti CCP, ESR, CRP bloods. Also any X-ray and scan reports and book a private appointment with a rheumatologist, to go through the results. As Musiclover says, with the severity of his symptoms you’d expect those tests to highlight that there is inflammation within the body. There are many types of inflammatory arthritis, so I would keep an open mind. Drs will always look at the whole picture, even when damily history suggests, a particular condition, they need evidence to confirm their suspicions, and without evidence they are often restricted what they can diagnose. I have ankylosing spondylitis, which there is very strict criteria for. You can contact medical records to request copies of all test results including reports, consultations etc. They have around 30 days to send them after you provide 2 forms of ID. Although we say Drs stick together, I don’t know of any who would ignore evidence, that a colleague may have missed, it’s their registration at risk. Most actively encourage you to seek a second opinion from one of their colleagues. I worked for 34yr with consultants, and never came across any ignoring results that would contradict their colleagues opinion. If you can afford to see one privately, ensure they work on the NHS so you can be transferred to their nhs list. The records from that consultation should also state his findings on the ultrasound, which would be useful to show the next rheumatologist. Good luck, and do keep an open mind, you don’t want to push the rheumatologist down a rabbit hole, and miss something. If you can’t afford private, ask your gp to refer to a different Trust, but waiting times are long at the moment.
Thanks Runrig01, lots to think about and getting his records sounds like a great idea. I promise we're not pushing for an RA diagnosis - we just want a positive diagnosis of whatever he has so he can get some relief from the pain and function again.
I do agree with most of this. And yes inflammatory markers would usually be raised in an untreated systemic autoimmune disease but if taking NSAIDs or low immunoglobulins then sometimes not. I agree that any consultant is most unlikely to be ignoring the tests done so far but we don’t know what these have been. If they were only looking for inflammatory arthritis then they could be failing to see a bigger picture with a rarer type of rheumatic disorder such as Vasculitis - which can present similarly in extremities ie MSK - but may not show up in same way in imaging tests. There are rare autoantibodies for rare autoimmune conditions and some hospital labs don’t even look for these.
For example there are only about 70 people in U.K who carry my scleroderma antibody so it wasn’t looked for - and nor even was ANA in first hospital I was under - just RF, ESR, CRP and anti CCP. Sometimes too autoantibodies only show further down the line. This is why many rare diseases and rare presentations of more common diseases such as RA often take 5 years+ to diagnose and why many of us with rare diseases end up becoming more expert about these, by default, than most general rheumatologists. A good rheumatologist will acknowledge all of this because it’s such an inexact science.
My husband tried halving his morning dose of celecoxib at the weekend and his pain (particularly) in his hands was even more intense, so it looks like the NSAIDs are doing something! However, it hadn't clicked that the fact he's on high-dose NSAIDs would mask any inflammatory marker tests, and presumably ultrasound too?
Sorry I can’t help there as can’t tolerate any NSAIDs now with scleroderma but cox inhibitors work differently I think so may not be as masking? Others here would be better placed to advise on this. I only distantly recall that taking max dose ibuprofen 4 hours before my 2nd rheumatology apt in 2011 was a big mistake as all the swelling in hands eased up temporarily. So it took another 4 months to get (mis)diagnosed and treated for RA. You really need you husband to access his notes and test results and work this stuff out. X
I would suggest you get referred to another hospital for another opinion or go private if you can. It would help give you peace of mind that you have tried everything possible.
Hi So sorry to see your issues getting a RA Diagnosis It's not unusual I too had trouble trying to find out in 2019 what was up with me, they tried all sorts of tests even tho my markers CRP AND ESR were and logged as abnormally high I was given all sorts of stuff , try this oh try this one so my GP(no longer at my surgery) to send me to see Orthopaedics he cut tendons in my fingers that were locking up and found a little nodule so he sent off to lab to get it checked for synovitis as he was 99.9% it was RA, still kept being sent everywhere, my husband was in Merchant Navy and they and family can go to "dreadnaught" hospital as it was but its now Guys and St.Thomas so I got Dr to refer me, I was there in Hospital from 9am till 4pm having lots of tests done saw 2 consultants, foot MRI and at 3.30pm called in and yes defo RA offered me a steroid jab in bum (I declined) but they sent everything to my GP and she referred me to Condultant who issued me Sulfasalazine and Leflunomide(small dose) and I have never looked back. You should have gone to a different hospital for 2nd opinion, I know it's hard but keep fighting, if you can afford a private Rhumatologist go for it for diagnosis but don't go to the hospital you have been too, take info you have explain why you don't trust 1&2nd review, and see what he offers but don't use same crowd.
I wish and your husband well and hope you get some light at the end of the tunnel, but keep fighting!!xx
my RA diagnosis came after a well women check at my gp no problems there but as soon as I mentioned that my hands ached and were stiff in the mornings she did a blood test and the results came bac with a positive sign forvA , a further blood test when I got to see a rheumatologist was done , a one off to prove or disprove RA it came back high so definitedefinitelynI had RA. Has your husband had blood testtests to help with any diagnosis. Also I would request anther appointment at a different hospital if it's possible. I hope things start to get better for you both
How are his bloods does he have high inflammation indicators? He doesn't have to have the rheumatoid factor he could have sero negative arthritis. I don't understand why they don't just try him on Rheumatology meds and if they work then bingo....some consultants have no people skills at all I did have to be firm with mine about her manner. I saw a rheumatologist previously who looked at my husband and asked if I had a lot of stress and suggested neurological pain..I had a hugely swollen locked knee and a swollen foot at the time and bright red face with fever. Keep pushing, act confident even if you don't feel it and challenge. It shouldn't be like this noone want a diagnosis of this horrid disease we just once answers and disease management xxx best of luck be arsy if you have to x
Did your husband have the covid jabs? If so did this happen after having them? Some people have had weird musculoskeletal skeletal issues afterwards. If so, I understand it can be treated. A friend of mine had a similar issue. It doesn't happen to everyone, and may not be an issue in your husbands case. Just a thought. He's clearly in pain and there must be a reason for it. All that said, I was dismissed for ages before rheumatology discovered what the issue was. I feel your frustration.
I'm sorry if I have misread your post but a sign your husband has actual RA would be deformed hands or toes. I don't think unless he's seropositive blood results like CRP or ESR are that reliable. First actual signs of deformation in hands is cupping. Basically your thumbs and fingers twist and bend and cannot be straightened.
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MRI SHOWED NOTHING!!!
What now?
In hope of getting advice on RA symptoms 
Has anyone had blood tests for RA and trey have been normal.
OA question
