Follow up to initial appt

[hazelcats]

Hi all,

I had my initial appt with rheumatologist 19th April, who diagnosed seronegative inflammatory arthritis. He gave me a steroid injection, which does seem to have lessened the swelling a bit, but still stiff and in pain.

But I have yet to receive a follow up letter summarising the appt and findings. I dont see them again until end of May to discuss and hopefully - finally - begin methotrexate.

Are these time lines usual? Obviously I am a bit anxious about everything so probably sound a bit impatient!

[KittyJ]

It depends on the hospital how long they take. My hospital it usually takes a few weeks so hopefully you’ll get yours soon 🤞🏻

[hazelcats in reply to KittyJ]

Thanks KittyJ I guessed that was the case but being newly diagnosed there's a hundred questions going round my head! Fortunately the NRAS website and this forum is helping a lot. Think I just need to take one step at a time. Thanks

[KittyJ in reply to hazelcats]

Keep asking the questions, they will reassure you 😊

[Flowersaregreat in reply to hazelcats]

You might also find the nras helpline to be helpful if you have questions or just to chat things through

[hazelcats in reply to Flowersaregreat]

Thanks so much, I have set up a request to speak with someone at NRAS as there's nothing like talking with someone who actually has similar conditions and experiences. Sometimes the more you find out the more questions come to mind. But there is so much info within the site and of course this forum. Thanks

[Runrig01]

I find it varies between Consultants. My rheumatologist takes around 3-4 weeks. My orthopaedic surgeon, I can get literally 48hrs later. He seems to type his own during the appointment though. Most forward their dictaphone to their secretary to deal with.

[KittyJ in reply to Runrig01]

My old rheumy used to dictate the letter at the end of my appointment and check I agreed with it but of course that doesn’t happen any more 😔 the good old days

[welsh12 in reply to Runrig01]

Mine typed his own during the appointment

[hazelcats]

Thanks Runrig, I shall try to be a little more patient🙄

[Leics]

I’m pleased you managed to get a diagnosis even though it’s not what any of us want to hear. In my experience three months between appointments is standard, I’ve just changed medication and that’s taken 5 months so it’s a bit of a lottery how long it takes. I’ve realised though that although I’ve been put forward for new treatments having no pharmacy staff and not enough biologics specialist nurses are mostly the reason for delay as well as arranging for healthcare companies to deliver the said meds when they’re finally arranged. On top of that docs strikes also create delays. Hopefully you’ll get your methotrexate sorted soon but then again it’s not a medication that generally works quickly. Good luck I certainly hope you improve soon and are stabilised quickly.

[hazelcats in reply to Leics]

Thanks Leics, although I suspected an inflammatory arthritis getting the diagnosis and it's impact is a bit of a shock in reality. I have heard methotrexate can take some time to take effect but I guess I am grateful that treatment should start soon. No doubt I will be back on here with more questions or worries once that happens...!

[Leics in reply to hazelcats]

That’s fine ask as many questions as you like that’s what the forum is for. Getting a diagnosis is always a surprise even if it’s suspected and we probably all can emphasise with that one. We are a helpful bunch so any worry you have or want advice feel free to ask. The only thing we can’t do is give you medical advice but that doesn’t mean we can’t share our experiences.

[Otto11]

Hi that was my original diagnosis too. My Rheumy team are very good at sending letters electronically often the same day. Endocrinology for example however take about 6-8 weeks & I often have my next appointment before the letter from previous appointment arrives. It depends on how many secretaries & how busy they are. I would suggest contacting your Rheumy secretary to chase it up if you can. Either that or ask your GP practice to chase it up. Good luck x

[Shep22]

Hi all hospitals are different I have never recieved a letter from them with

Usually sent to gp

Yet other departments in our area do send the letters ours bad for this

Your follow up is quick

Again they are all different

Ours our rumatologist says after appointment

Book on way it

It is usually 3,6,or 12 months

Good your being seen quick follow ups

[Fluffontoast]

I have just been diagnosed with seronegative arthritis after my knee swelled in January and then my other knee and ankle in March. Only just been seen by rheumatologist 3 days ago for 1st time and have been hobbling for months. I think my delay was partly due to initial misdiagnosis as a cartlidge injury but also, my GP wasn't fighting my corner and I was just sitting on a waiting list and being told that it would be 2-6 months to see a rheumatologist, so I had to kick up a fuss. Had injected steroid by knee surgeon some weeks back which was rubbish but now on oral, which is like rocket fuel! Big difference in 2 days! Wish I had this months ago! Looking forward to the Methotrexate which he said I will probably be on indefinitely provided it works. I think the long duration is also due to all the blood tests and xrays needed. Don't worry, you'll get there. I was told I'd be back to normal soon. Good luck

[hazelcats in reply to Fluffontoast]

Thanks for sharing and reassuring me a bit. I think I had 18 months of tests and assumptions of other conditions to eliminate so that's why it all seems ( in my head ) a long wait! Guess seronegative throws a spanner in the works blood test wise.Least the methotrexate should come soon for both of us,and the lovely people at NRAS have set up a phone appt with me next week to help with information etc. So I do feel I am moving on.

Glad your oral tablets have not the right spot. Take care