Thank you - and an update

[mjrminor]

I wanted to say thank you to everyone who responded to my post last week about getting nowhere with rheumatology and my GP after suspecting my meds have stopped working. Your support really picked me up from the floor.

As recommended I contacted PALS. This morning I've received a hastily typed letter ( judging from the errors) from a consultant apologising for the lack of response and treatment. He said my rheumatologist left a few months ago, and said that obviously there are severe backlogs in patient appointments due to the pandemic, so the earliest he can see me is 13th October....

He did say it's not right that I've been left to suffer, but then went on to say I should be reassured though that my last test results were all in the normal range.

My heart sank a bit at that because as I mentioned here I'm seronegative and apart from two occasions my inflammation levels have always been low. At least I have an appointment I suppose. Still, I think paying to see a private consultant once we've moved house is looking more and more inevitable.

[Mmrr]

Good progress, but perhaps a follow up written response to the rheumatologist asking what he is offering as a 'stop gap' until the appointment in October ?

[mjrminor in reply to Mmrr]

That's a good suggestion. Thank you Mmrr.

[oldtimer]

I know how difficult it is when the consultant leaves and there is no replacement - it happened to me too and the overstretched nurse practitioners could not cope with the extra workload or take any decisions about changing treatment. It's an explanation of the problems, but doesn't solve them!I'm afraid your only option is to go on pushing for adequate treatment. You have an appointment but that's only the beginning. Keep good records!

If you do decide to go and see someone privately, it would be sensible to chose someone you could also see later on the NHS. The tests and medications for Rheumatoid Disease are too expensive to be manageable privately.

[mjrminor in reply to oldtimer]

Hi oldtimer, lots of good advice. I've been keeping a pain diary using an app on my phone, and I've been taking photographs of when my hands become inflamed. I'm looking at getting a consultation at the Royal National Hospital for Rheumatic Diseases in Bath, which is NHS run, so I'm hoping I'll be able to switch over to their care if necessary once I've paid for a private consultation.

[Egpa in reply to mjrminor]

Hi, I go to the BRI Rhumatolagy consultants they are very good, helped me through some rough times. Just thought you might like to know incase you can't get into Bath. Good luck.

[mjrminor in reply to Egpa]

Thanks Egpa, that's really useful to know.

[Egpa in reply to mjrminor]

Also I notice you take methotrexate as well as montalukas, I was told when I started taking mtx to stop my montalukas as they did not mix well. I have both ra and bronceactsis to taken a few years to get both under control. Hope you feel better soon.

[mjrminor in reply to Egpa]

Oh I don't take methotrexate anymore. It really triggered my asthma. So did Leflunomide. Now I'm on Sulfasalazine and Hydroxychloroquine, which were working for a while, until earlier this year. I'm glad you've managed to get things under control. I'm determined to get back there too.

[Sheila_G]

I agree with Mmrr. Don't suffer in silence.

[mjrminor in reply to Sheila_G]

Thanks Sheila. You're both right.