Need advice on RA not being diagnosed via NHS - NRAS


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Need advice on RA not being diagnosed via NHS


My GPs are not helping me get a diagnosis of RA. I was diagnosed in Cape Town 16 years ago with sero negative post partum RA, but ten years ago moved back to Scotland, where the NHS RA Specialist said he couldn't find any markers. I am in so much pain as medication is now no longer being monitored and my gullet feels like it is disintegrating due to meloxicam and acid reflux. Was in tears to my GP last week, but they refused to send me for another opinion, and have not even suggested a pain management clinic (which I was ony informed about this morning via Patient Advisory Service). I am 60 and cannot get a job and due to not being able to get a 'fit note' am almost suicidal with pain and worry how I will survive if Universal Credit forces me to work in a physically demanding job as GP not providing 'fit note'. I definitely have osteo as my top finger joints are very swollen and twisted. I just don't know what to do anymore and feel helpless to find a solution. Can anyone give me any suggestions or advice? I spend most of my day in bed on my bad days, which have been really bad in this heat wave.

28 Replies

Hiya ZsaZsa22, welcome. Your pain comes through in your post, as does your frustration of not being listened to. Well, 10 years since your second non diagnosis confirmation is a long time to allow RD to have possibly raged through your body, let alone the damage it may/could have caused by not being appropriately treated. An NSAID will ease the inflammation of OA & RD but will not tackle RD, be it seropositive or seronegative.

Have you tried seeing another GP within your Practice? I wonder if a new pair of ears & eyes would recognise signs of inflammatory arthritis, aside from your OA which exists & is obvious from your affected DIP joints. It only takes a relatively inexpensive blood test to confirm if your inflammation markers are raised & though your RF may be normal/low as your previous diagnosis was seronegative it isn't unusual for it to change to seropositive but without testing you'll get nowhere. If they will take it ask if you can have an anti-CCP blood test added on, this is more sensitive than the RF but more often than not is taken by Rheumys over GPs.

Do you think it would help if you took someone along with you, someone who knows how bad things are for you now, your husband or partner? Sometimes it helps to have someone support your case & be listened to.

Going back to meloxicam for a mo. Are you prescribed a ppi (a stomach protector capsule, omeprazole of similar) to be taken alongside it. If not do request you are.

Another option is going private. It shouldn't be necessary but if you do consider it be sure that the Specialist also sees his patients on the NHS, then you can ask to be transferred.

Meantime it might be helpful to have a read of this from the NRAS You may find tips you haven't used previously to be understood that bit better.

I hope some of this helps & your next GP appointment is a positive one. You can always ask for any other help here or if you'd prefer to talk to someone the NRAS helpline are very helpful... Freephone Helpline: 0800 298 7650

ZsaZsa22 in reply to nomoreheels

I only have my 17 year old son who is on the Autism Spectrum. We are very isolated socially. So I have no-one to come with me. I have seen a few of the GP's at that practice over the years, but none of them are helpful and seem arrogant and dismissive of me. They flatly refuse to help me. As I have been unable to work for many years, I have no money for private healthcare. I was a full time carer for my mum who had RA and who passed away last year. Her poor hands and feet were horribly gnarled by RA. She was never given any medicine for it which makes me so sad. I just need a referal to someone who will diagnose me through the symmetrical symptoms on both sides of my body, the way I seize up completely if I come off the Salazopyrin, Meloxicam, and yes Omeprazole, and the burning, tingling sensation in my hands and feet and the extreme fatigue and tendonitis. Surely that should be enough to confirm a diagnosis?

J1707 in reply to ZsaZsa22

I’m S - negative and I don’t show inflammatory markers in my blood but I have all your symptoms. I too was dismissed at first (at least 8years)but eventually someone listened I was told I didn’t have RA but 5 years later was again sent to a Rheumatologist who said I definitely had it due to my symptoms. Had a relatively good 3 years on methotrexate but things became more aggressive this year had to fight to be seen was eventually seen last week . Again my blood tests showed no inflammation but he could see things had deteriorated. I had a photo diary to show him it really helped. I wish i could help you.

Bet someone on here will be able to advice you there usually is

Good luck

ZsaZsa22 in reply to J1707

Thanks so much. It helps to know there are others who show no markers. Gives me strength to persevere x

nomoreheels in reply to ZsaZsa22

I didn't realise you are actually on a DMARD (sulfasalazine). That being the case you should be under a Rheumatologist & having reviews in the department if not every 6 months then certainly annually as it's a specialist prescribed med. GPs can repeat-prescribe but not prescribe it initially so how, if your Rheumy from 10 years ago was unable to find any RD markers, you are still considered suitable to take it I'm not sure. If this is typical of care at your Practice then truthfully they aren't serving you well, in fact they could be seen as being negligent.

It seems you're in a difficult position but I really do think you need to be reviewed as SSZ obviously isn't helping enough & the NSAID is causing you problems.

When I suggested going private in meant just a consultation in view of getting a firm diagnosis, no need to take out private healthcare. This is why I said to be sure he also sees patients on the NHS, so you can transfer over once you have a diagnosis. Consultation fees vary but possibly around £100 one off payment but I understand if this is a stretch, I just want you to have either a diagnosis or RD ruled out & be treated for whatever is ailing you. It does seem likely though with your Mum having had RD, you're obviously aware it can be genetic. I'm sorry, it sounds though she suffered greatly. Was there a specific reason she wasn't treated with the appropriate meds, DMARDs or anti-TNF's/biologics? Wondering if she also had issues with being referred or given an official diagnosis.

The only other thing I can think of is to change GP Practice, if that's feasible. Some GP's take further training in Musculoskeletal Diseases or even Rheumatology, as it states in the link so it would be ideal if there was one in the Practice you choose, if you do. I was fortunate that the one & only GP in the village I lived in was a GPSpR so recognised I had RD after only a month of symptoms, I appreciate I was very fortunate in being formally diagnosed within a fortnight of being referred.

I really would consider calling the NRAS Helpline, they may well be able to offer very good advice.

ZsaZsa22 in reply to nomoreheels

Thanks so much. Senior GP asked me in for an appt today and bloods and is sending me for c.t. scans of my hands. Will see what comes out of this.

nomoreheels in reply to ZsaZsa22

That's a turn up considering they usually dismiss you! Well, good, let's hope both the bloods & imaging are conclusive. If not request they ultrasound your hands & feet, it's better at picking up even the slightest inflammation.

Keep us updated.

ZsaZsa22 in reply to nomoreheels

This result was because of your support. It helped me push that little bit more xx

nomoreheels in reply to ZsaZsa22

That's nice, I'm just pleased to have helped. Do continue pushing, be your own advocate because no one else will be! It's only the squeaky door that gets oiled.

J1707 in reply to nomoreheels

nomoreheels has given you the best advice. I really feel for you good luck

If you are on salazopyrin who is monitoring your condition? This would not be indicated for osteo-arthritis, so presumably someone thinks you have inflammatory arthritis and with a family history of Rheumatoid...that's the most likely.

It would be worth writing down your worries as a list and booking another appointment to discuss your management. Explaining that you are not managing currently quietly but firmly.

You might find looking at the NICE guidelines helpful?

ZsaZsa22 in reply to oldtimer

Will look up link. No, no-one is monitoring me. They are just repeating original prescription because I begged them to.

I had same question as old timer - who is prescribing your salazoprin? If it is your GP’s surgery then they are being negligent if they are doing so without monitoring you.

Do you have anything to show your previous diagnosis?

My suggestion would be to set this down calmly and politely in a letter to the practice manager. You need to make clear that you are not happy with the care you have received and are going to make a formal complaint if nothing changes. You have a previous diagnosis of RA that is not being acted on, and your current treatment is not working effectively. Also despite numerous requests and obvious pain there has been no action to identify the cause or refer you to a pain management clinic if no diagnosis can be confirmed.

Ask them to review your case urgently, as your interest is in getting effective treatment and not pursuing a complaint via the health board.

But a horrible situation to be in, so I feel for you. Good luck.

Thank you for the sympathy. It helps to know people care. I feel I have pushed this practice as far as I can now. Will see what comes from today's plan.

I would support all that has been said above. I am sero negative and went through almost 2 years of very poor quality care and computer says no scenarios. What worked for me was building a case and launching a big challenge. Everything I do now is written down, no more verbalisations, write things down , letter or e mails , with a request for submission into your medical notes (very important) it makes people take action.

I'm always very polite, but very firm. I ask , I question, I requestion and I get copies of all my notes. I write down what is being said to me at each appointment.

It is very sad, but people take notice when they cannot wriggle out of what has been said by either party. I'm happy with my care now, my appointments are efficient, no time wasted.

So don't give in ask , ask , ask , ask and ask again...all in writing of course.

ZsaZsa22 in reply to Mmrr

Do you mean you built a case to challenge them in court?

Mmrr in reply to ZsaZsa22

I challenged the consultant at my appointment. She had been claiming I was depressed for 2 years , I wasn't. She ignored many classic signs of RA, using blood results as evidence for not having RA, spraffing on about the need for scientific evidence. But using her ( very uniformed ) opinion saying I was depressed without any proper assessment or scientific evidence. I got all my notes through freedom of information, build a case myself of why she was wrong. She gave in, re MRI'd me, I had active synovitis in my wrists, hands, ankles and feet and DAS score of 5.4. I insisted on her doing my DAS, she had never done it before.

I started biologics 21 days later and received a letter from her saying my treatment had been 'sub optimal' over the past 2 years.

ZsaZsa22 in reply to Mmrr

What is a DAS?

JFlay in reply to ZsaZsa22

DAS is disease activity score.

ZsaZsa22 in reply to JFlay

Thank you. You are helping me a lot, with much needed info.

Welcome to the site!

I have a son on the autism spectrum too, had to fight for benefits (because no notice given about State Pension delay) but at least I got a diagnosis before I was left with absolutely no savings. Sometimes life throws us several horrible battles at the same time.

Good to know you finally got some co-operation via the GP route.

As others have commented, prescribed medicines that have potentially rather harmful effects mean patient must be monitored, and the good effects desired are reflected too in regular blood tests.

I hope you soon have positive progress to confirmation of diagnosis as well. Being seronegative does make it a longer process but x-rays and/or ultrasound would pick up RA signs.

Wishing you all the best!

Thank you. Having my hands scanned tomorrow but although they are very sore, I only have swollen hibberdenes nodes (top joints) which is osteo. I hope the see issues with other joints.

I had the same problem.

I suffered, undiagnosed, for five years, so I threatened to take my GP to court and was diagnosed in under a fortnight!

That was six years ago.

Patience has limitations.

Your stomach problems maybe down to ulceration.

Three antibiotics over ten days solves this.

If this isn't the cause, then one of the 'prazoles will work.

Be polite, but be firm!

Good luck.

Thanks so much. My GP's keep telling me they can ONLY go by what NHS RA consultant has told them...i.e. No markers : (

And they were telling me the exact same things, but *suddenly* and threatened with legal action, they came to the realisation they were wrong.

I hate to sound uncharitable, but it seems to me some doctors are actually reluctant to spend resources, at least in my case, on someone they've already diagnosed with another progressively, terminal illness.

I've become somewhat cynical, I'm afraid. Lol.

But it's not 'their' resources. But I agree with you and thanks for the advice. Can't say I would feel comfortable going back to a GP who I'd threatened with legal action. Have they treated you ok since?

Would you antagonize a patient, knowing there'd be repurcussions, either with your governing body or a medical specialist lawyer? Lol.

My policy in life is it's nice to be nice.

Some folk have mistakenly taken that for being soft.

We learn by our mistakes. ;)

Well, I'll try the same approach, but I'll probably be told to find another Practice. Watch this space!

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