No more treatment - Dr says - NHS has to be objective!

[Sminty2]

Hi all, I'm a little bit discombobulated and unsure of what to do next.

I was diagnosed with Palindromic RA in 2014, I was on Sulfasalazine, then Methotrexate then my rheumatologist said it had progressed to full RA but sero negative and put me on a combination of Methotrexate injections and Cimzia, a biologic. I felt wonderful, no pain, no swelling.

After a few years, I developed a mass in my lung which had to be removed, along with the top of my lung and this coincided with Covid so I wasn't given any more biologic treatment as they felt the biologic was responsible for the lung mass (it was non Tuberculin mycobacterium lung disease). I continued with Methotrexate injections. I was then put on to Abatacept, which was thought to be the safest biologic but nothing really changed - still pain and swelling, so the dr stopped it, and said just keeping the Mtx.

My rheumatologist then changed after Brexit (she went home) and I was given a new rheumy. He put me on Leflunomide, but it didn't work and since then I have seen the rheumatologist twice, and at his instruction, I had a scan on my hands in March. Today, I saw him for the results of the scan.

He asked how often my hands swell or are painful, I said 2 - 3 times a week. I also said that my ankle, knee and toes swell, and my shoulder is painful.

He replied that at the time of the scan, on the day of the scan there was no evidence of inflammation and that the NHS HAD TO BE OBJECTIVE ABOUT THIS, therefore, he could not say that I had RA any more and he would offer no further treatment, he said he would refer me to a pain clinic if I wished but that I no longer required a rheumatologist.

Can this happen?

If on one day, at one time, on a scan there is no swelling or pain - you are dismissed? That isn't scientific, science requires regular observation and recording of evidence.

I have lots of photographs of my joints swollen and red as my previous rheumatologist liked to see these (she asked me to take them). I also have very dry eyes and am prescribed drops and cream for them.

He isn't interested, saying that it could just be osteoarthritis and implying that it was all in my head i.e. there's no evidence at the time, on the day of the scan and therefore it doesn't exist.

He kept saying WE HAVE TO BE OBJECTIVE AND THERE IS NO EVIDENCE of RA and that Osteoarthritis can cause pain and swelling (contrary to everything I've heard in the past). Is this a cost saving thing - to reduce the number of patients?

What would you do next? Thank you for reading.

I’d go back to your GP and ask for a referral to a different trust .

Ask for a second opinion. Horrible for your own experience and reporting of symptoms to be dismissed like that.

So, is the Rheumatologist saying you’ve possibly never had RA or that you don’t have it anymore? If the latter, I’d be raising more than an eyebrow.

I have RA and the last time I saw my Rheumatologist, I was in a good place. 3 days later I started a flare that lasted 6 weeks.

This sounds to me like cost cutting, as biologics are expensive.

I would make a formal complaint via PALs and insist on a new consultant - and an apology.

If I did not receive this I would complain to my MP and the hospital director. Do not let them get away with treating you like shit just because it’s the NHS and we should all be oh so grateful that we grovel on our knees for crumbs.

Something similar happened to me, new rheumatologist telling me there was nothing wrong with me, she was quite nasty and shouted at me. I made a complaint, received an apology and admission that she had made it up and allocated a new consultant. Please pursue. A single negative scan is an indication of precisely nothing, particularly with palindromic RA. Good luck.

I’ve been hearing such bad stories about rheumatologists lately. There does seem to be a shortage and the waiting lists are huge. It’s so easy in hindsight to have a witty response but asking if I’d discovered the cure for RA would probably have been what came out my mouth. Can you ask for a second opinion ?

i don’t have RA but no two rheumatologists say the same thing. They bat back and forth depending on how senior they are between vasculitis (the more recent senior docs/consultants ) and a mixed connective tissue disorder (the juniors going on word the very eminent profession I saw first and only visit with him 20’years ago) - you haven’t exhausted the biologics so you should be offered different types to try if you still flare badly. Sounds like money saving.

take up the pain clinic as they can also help but ensure you’re kept on the books for at least a year

Not sure if it’s standard across the NHS, but with biologics I was told it’s a “three strikes and you’re out” situation. In other words, they’ll try 3 different ones and if none work, they stop the biologics.

I’m on my “third strike”

It sounds to me possibly like your palindromic rheumatism hadn't actually progressed to RA after all so you are still suffering from that. Is that still there as a diagnosis? It has very different effects on the joints than RA and almost sounds like the rheumatologist didn't see the expected effects of RA and hasn't looked any further than saying you don't have RA?
I had palindromic rheumatism for years (now almost completely gone) and many doctors I've seen over the years have not ever heard of it. I'd expect a rheumatologist to know of it though.

I would arrange for a private consultation with a rheumatologist who doesn't do work at the same Trust. My DH took 10 years to get a diagnosis for ankalosing spondylitis despite having a wide range of symptoms. A private consultant finally diagnosed him and our GP picked up the problem and prescribes etoricoxib and is willing to look to other drugs when required.
I saw a rheumatologist a few months ago who said I had no sign of RA despite swollen hands, feet and knees and practically every joint aching most of the time.
I think it's a very difficult disease to diagnose and manage. Have you tried everything else such as diet etc? My father had terrible osteoarthritis but found cutting out deadly nightshade family and alcohol massively helped.

Thank you. I’ve thought about it and you are correct. He was unconcerned and dismissive.

When he said that the one scan showed nothing, I asked for another scan and he replied that I couldn’t have one due to the radiation risk but it was an Ultrasound, which doesn’t have any radiation involved. That’s a pretty basic error.

I will contact them tomorrow. I know the NHS is struggling but that’s no excuse.

I was diagnosed with PR in 2015 which later progressed to RA.
I had some issues with my rheumatologist a few years ago and my GP said she could refer me for a second opinion. What I actually did was to see a different rheumatologist from the same trust privately. He had access to my NHS records and was happy to discuss my treatment. He then added me to his NHS list.

Rheumatology does seem to be in dire straights. They are a year behind at my local trust.