Random appointment

[Haylz2109]

Hey all, Hope you're all doing as well as can be 😊

I've recently started azathioprine and I'm tolerating it surprisingly well not having any of the stomach side effects etc and my bloods were showing ok only just gone up to the 150mg dose which will be my maintenance dose if all goes to plan. However this morning I've had a text for a seemingly urgent face to face appointment to see my rheumatologist next week which has thrown me completely for a loop as this is not something I was expecting due to the last phone call I had with her it was left that if all was well with the bloods and azathioprine that it would just continue so no mention of appointment to be coming.

I contacted the appointment line because I was unsure why this appointment was sent to find out that if I didn't go the next available appointment isn't until next year which makes me think this is an urgent face to face one and she also mentioned its a lupus follow up? This has never been said to me before as I'm only diagnosed with UCTD.

Sorry for babbling I'm just really worried now what this appointment means and such given that its within a week and really unexpected.

If you got through my babbling thanks for reading 💕 xxx

[OldTed60]

I wouldn’t worry about this. Have you had bloodwork done since starting Azathioprine and if so, is this being done by your GP practice under shared care? If so then maybe phone your GP practice to make sure nothing untoward has shown up. When people start immunesuppressant treatment then it’s protocol in some areas to be seen in person so the consultant has a better benchmark to go by. The specific diagnosis is probably irrelevant to the need to see a rheumatology patient when they are about to start or have recently started a new treatment.

I’ve been getting the opposite follow up care in that my rheumatologist hasn’t seen me herself for nearly a year due to such heaving clinics, likely full of “new” referrals who have been waiting way past the guideline timing for early diagnosis to be seen. I don’t mind much because I’m feeling okay and I have her direct email for when I’m not. But since I last saw her I’ve had a portacth placed, surgery for a colostomy, first Covid infection quite badly and started Rituximab. Also Scleroderma patients should be seen or reviewed 3-4 monthly as priority due to the seriousness of this disease. But for the first time she’s written “6 months in-person follow up” in her letter last month following phone review. Personally I think they should prioritise patients with symptoms and signs of very active disease for reviews but the NHS is a law unto itself!

[Haylz2109 in reply to OldTed60]

Sorry for the late reply. I have been having blood tests every 2 weeks but as I say only started on Azathioprine about a month ago so only just recently got to the maintenance dose of it. I did speak with my gp as they are doing shared care and it's shown that some items have come back different however my liver enzymes etc are always up and down so it's to be expected in the bloods and my rheumatologist has been dealing with me for 5 years so is aware this can fluctuate.

Ah is it? I didn't know that there could be that protocol in place, that would make sense though so thank you for that. Surprised she didn't mention it when we last spoke on the phone though and it's usually months I have to wait for appointments.

Ah no have you? I'm so sorry to hear that, I completely agree they definitely should be keeping a closer eye on people with an active illness especially like you say with the added on issues you have had since last seeing her.

To be honest I'm surprised I'm even seeing her because usually it is like getting blood out of a stone but I have been having treatments or procedures regularly for the last 5 years so I don't know if things will change now going forward due to being on hopefully the right medication but time will tell.

I agree with the prioritisation too as even if you're in a flare and ring the helpline it's a minimum of a 3 week wait for a call back and even if you go to a and e (which I have done in dire need) they don't know how to deal with any of your symptoms etc. Would be nice to also know follow ups so when the next appointments would be and things but they always just say they are struggling with staffing which is why the next available appointments aren't until next year.

It really just makes things a lot more complicated for people who are already struggling with their daily life and symptoms doesn't it? Thank you for taking the time to reply, it's much appreciated ☺️ xx

[Haylz2109]

Sorry for the late reply. It would definitely be a good thing if they are taking UCTD more seriously and providing further support for people with this condition. However because I've been under my rheumatologist for 5 years and numerous investigations etc I'm used to how she does appointments and so on so this is very out of the ordinary for her especially given that I only spoke to her on the phone the other week and it was left that all should be good to continue on the Azathioprine and no further appointments or anything scheduled.

Usually it's an absolute nightmare to get hold of them even if i am in a flare so I'm definitely not complaining and at least I don't have to wait too long to find out the answers of why she needs to see me so suddenly. Thank you for taking the time to reply also ☺️ xx