Felling low and a bit sorry for myself

[GracieOS]

I have rheumatoid arthritis as well as heart failure. I was on methotrexate and my arthritis well controlled. My Cardiologist told me to come off methotrexate as it maybe contributing to my heart failure. I did so in march 2019. Since then my arthritis has started flaring up. Recently it has only been affecting my wrists and hands so at my last rheumatology appointment I agreed with my rheumatology consultant the way to go was in-joint injections into my wrists. I was waiting for my first injection when lockdown was announced and all clinics cancelled. I'm now in pain, often significant pain. I struggle to dress myself in the morning. I struggle to prepare and eat food and have lost 3kg in weight over the last few weeks. I'm not overweight and have no need to lose weight. I struggle with personal hygiene and to wash my hands, a key concern at this time. All this is entirely avoidable and my condition entirely treatable, but I can't get treatment. I should also add that rheumatoid arthritis left untreated can affect other organs, including the heart. I rang up yesterday pleading to be seen but was told that while I will be a priority to be seen when clinics restart, all clinics are cancelled for the foreseeable future. I'm, like many others, collateral damage in fight against C-19 or that's what it feels like. Not expecting any solutions, I just need to vent my frustration.

[Hidden]

I feel your pain, quite literally. After 10 years of back and forth, I was finally diagnosed with psoriatic arthritis in January, which presents much like RA, but your bloods are usually normal, which is partly why it took so long to get diagnosed. Unfortunately the severe delay in diagnosis means that I’m a lot worse off than I needed to be, with significant damage to my spine, hands, wrists, one elbow, one hip, both knees, and my toes, and my current flare began last October. I was started on mtx as soon as they diagnosed me, but spent much of Jan, Feb and March on steroids because the pain was awful whilst waiting for the mtx to kick in, and in the end it never actually did. I was due clinic at the start of April, but they cancelled due to covid, and then my GP said they were unwilling to continue providing steroids without specialist input. I know you weren’t looking for solutions, but the advice I can give you from my own experiences is this:

1. Anyone with an inflammatory arthritis in the UK should have access to a rheumatology nurse specialist service. This is NICE clinical guidance. If you phone the switchboard of the hospital that provide your rheumatology care, you should be able to ask to speak to the nurse specialist, who can then consult with the doctors, provide advice and get this sorted. All specialist nursing services are (or should be!) running ‘as normal’ - hours may be reduced due to covid redeployment, or absences, but there should still be a service available.

2. Even with the current situation, you should still be able to speak to a rheumatologist on the phone: if you are experiencing a flare, you are suffering permanent joint damage for as long it goes unmanaged, and run the risk of organ issues as you said. After my appointment was cancelled, I phoned the secretary and explained what was going on: that the mtx wasn’t working, my flare was ongoing, my symptoms were as bad as ever, and I couldn’t get off steroids as a result and she completely understood that this was not a situation that could be left for any meaningful length of time whilst waiting for covid to do one. I got a call back two days later from a senior rheumatology reg, and between her and the consultants redeployed to the covid ward, we organised starting a new DMARD in addition to an mtx dose increase. It took nearly 7 days in total to sort, and I had to get a complete stranger to go to the hospital to collect the drugs and blood forms for me as I’m in shielding with my daughter, but it got done.

3. If you have RA and you’re experiencing a flare, unless another condition prohibits it, you should be on steroids. This is standard practice in arthritis management, and the GP should be able and willing to prescribe these in the interim whilst you try and sort out DMARD therapy with rheumatology. I hate being on them with a passion, but I would have been literally crying with pain in a corner by now without them.

Vent away, by all means, but I hope some of the above might help in more practical ways.

[GracieOS in reply to Hidden]

Thank you. I have been in touch with the RA nurse and while she was very sympathetic and has put me top of the priority list to be seen when clinics resume she says there are no plans to resume clinics anytime soon. I've been on steroids, had a kenalog injection about 6 weeks ago as an emergency stopgap but it is starting to wear off. GP wont give more without consultant seeing me. And I can't be seen as they aren't running clinics. Catch 22. I have written to my Assembly Member (I live in Wales) and he has just replied to say he's written to the health board CEO to ask for clarity on when clinics will resume.

[Hidden in reply to GracieOS]

Ah. Well, I’m really sorry to say that from my own experiences, the Welsh angle explains an awful lot - I moved my 12 yo daughter and I back to England last summer, having lived in West Wales for 18 years. The main reason was the very poor quality of medical care we were both receiving - small person has complex needs including quite severe cystic fibrosis, I have a complex medical history including cardiac and neurological problems, and I have no doubts at all that one of us would have died well before our time if I hadn’t got us out. The ten years of back and forth for the arthritis was all in Wales, but they had me diagnosed within 3 months of going to the GP here. I was repeatedly also told my neurological symptoms were all in my head when I actually ended up needing two rounds of brain surgery. My post-operative pain was actually meningitis that saw me spend a month in hospital, and I’d literally had to beg them for a lumbar puncture even though I had all the classic signs. Took them 16 hours from presenting in A&E to do the test: I quite literally could have died in that time. There are so many absolutely awful experiences I could share of NHS Wales, but it’s not even limited to one health board or hospital, as between us we were receiving treatment from 4 UHBs, and had done every hospital south of Aberystwyth bar Newport. At the point we moved, my daughter was coughing up blood every day and her lung function was down to 46%, even though the tertiary team in Cardiff were convinced she was fine. It’s taken this long just to stabilise her with her new team in London, but they’ve also categorically proven that all of my concerns were correct and she has widespread, permanent lung damage that for the last two years the Welsh team had denied was even possible. Which they would have known had they agreed to do a CT scan, but they wouldn’t even do that.

Now that my own rant is over...there is still absolutely no justification for the rheum NS not to speak to a consultant on your behalf or get a doc to phone you. That’s just ridiculous. Try your AM as you say, you could also try PALS, as I had some previous success with them over some things, but they’re likely to be even more snowed under than usual, so don’t expect a particularly quick reply. Depending on how assertive you are and how able you feel, you could phone the consultant’s secretary, explain the situation, and point blank request she get a doctor to phone you. If she says no, very politely explain that you fully appreciate the situation, but that under current NICE guidance on inflammatory disorders and covid-19, this is a situation that still requires action: you’re coming to avoidable harm, it’s tantamount to negligence, and whatever the outcome you will be making a formal complaint. Sometimes the threat of a complaint is enough. Or you could even take that tack with the nurse or at least get her to explain in detail why she can’t speak to a doctor on your behalf or get a doctor to phone you. What’s the point of her being in work if she’s not actually doing the primary part of the job????

I really do feel for you - not much help, I know, but it’s genuine.

[GracieOS in reply to Hidden]

I live in West Wales. I've experienced very significant delays in getting tests done, over a year to have and get the results of a cardiac MRI following my heart failure diagnosis for instance, but treatment has been fine to be honest once these delays are done. That said delays are extremely worrying and could result in harm. My current situation is very concerning, my father who lives in England and requires the same in-jiont injection as me is able to get it at his GP surgery and his treatment has continued throughout this crisis.