How do you handle it? Scared and lost

[Challengedbutenlightened]

I have an incredibly rare autoimmune condition and can be extremely life threatening. I won’t mention the name as it’ll be very outing. I have only had 1 flare which nearly killed me. The consultants said it was violent and aggressive and quick, the part of the body attacked has been fixed. I have annual check ups, which have never shown anything, bloods all good but a PET scan is showing inflammation where I’ve been ‘fixed’. I’m am sat here really scared, with the NHS so over stretched I’ve had appointments cancelled for follow ups and part of the follow ups I let each team know what’s going on with the other consultants (I’m under three different hospitals due to the complex nature of the disease and procedures that have been carried out) how do you handle your disease? How do you handle a flare?

I’ve kinda been left to it other than the annual check ups as it was considered my disease had burnt out due to the aggressive start.

Annual check ups seem a bit few and far between. I have a very rare auto immune disease - like you started with a bang but is (mostly) stable now. I'm now under just two hospitals but one is a days trek to get there and back. I see my main consultant every 3 months though.

I had to push to start with - one to even get a diagnosis and help but after for scans appointments and physio etc. Mine started at the start of lockdown- I was sent home from hospital after 2 months before they rearranged the wards for the covid influx so it was all new and scary and left to it.

I've found a good relationship with my main consultant. I've only had follow ups at the hospital recently with him as registrars etc had no idea about my condition. You'll probably find that you know way more about it than any drs you see(!)

I'm lucky that I can email my consultant via his secretary and he'll call back normally the same or next day. Our hospital also has a helpline where a nurse will call back to help - does yours have anything like that?

I've also found a supportive group on fb, everyone has a slightly different type but I've gained loads of knowledge and support.

Is there an organisation for your illness? Some have fb groups or helplines that might be able to offer support.

It's difficult though, I have to constantly follow up scans and early on, chemo appts, bloods and appts.

Your different consultants should be communicating with each other, do they ever have a MDT meeting, or could you ask for one?

Flares are more tricky, tbh I normally end up as an In patient so can't really offer advice, I have worked out the quickest way to get through the system for admittance though (!)

I keep all my notes on my phone inc letters incase I need to show them to anyone new and have to keep track of when I need to do stuff scan, etc incase they need chasing up. I also email a lot to chase results.

If you're currently flaring with inflammation are you on steroids or biologics? Can you call or email your consultants secretary to request an urgent appt? They should be able to check when the next available one is or speak to the consultant and hopefully fit you in sooner

Sorry you had to push to get seen but happy your stable and are being looked after.

I got on really well with my consultant but, unfortunately after a short illness he passed last year (this is v outing) he was world leading in my particular disease. I used to be seen regularly but everything was fab so it got reduced. I don’t think any of my consultants have an MDT.

I have literally spent today driving to my local hospital dropping off report’s because one department has the PET and they other departments need it (I have three consultants at the same local hospital) and persuading them to release my data. I’ve also managed to get an appointment on Tuesday morning in London from the cancellation the other week but it’s not specifically for my condition it’s from the fix they did which discovered the disease. I’ve rung my rhuemy but not heard back.

I’m back on steroids but no biologics until they confirm if I’m in a flare (ESR&CRP are both under 2 so no help there!), this is from a recent admission where I literally bedblocked all week cos they had no idea what to do with me

there’s no organisation at such in the UK for my disease, there only approx 3,000 cases worldwide, it’s more common in women’s of childbearing age from a specific demographic.

The FB is really supportive but the disparities in care is very evident, I also find it very hard because of conflicting advice, I’m very medically minded and have researched a lot about my disease and the heart (I have another potential condition relating to the heart) and some advice baffles me it’s so bad 😞 I also feel like a fraud as to look at me I don’t look/feel Ill, again some on my group suffer so terribly.