Update on first NHS Rheumatology Appointment

[Garnacha]

Hi everyone, saw consultant today, still trying to get my head round it all as it was difficult hearing everything he said, mainly due to the face mask 😷🙄

he had a student with him & when I asked how long is the appointment for he said as long as it takes which gave me confidence.

After taking my history & a physical examination he said that as far as he could tell there was no inflammation today or damage from inflammation but, he said steroids can mask this.

He arranged for xrays of my hands & spine which were all done today, he wants me to taper off the steroids, I'm currently only on 5mg so to try every other day.

Regarding the pins & needles in my feet & legs (peripheral neuropathy) he checked my reflexes which were OK except my left foot wasn't as responsive, he mentioned conduction testing but said to see how it is by my next appointment 17th March.

I said about the side effects I assume from metoject (& possibly lefluminode) & asked about additional folic acid tablets, he said no probs he'd change my prescription 😀 he said its difficult to know if it's the meds or condition that causes them & wants to see how I get on between now & March on 15mg lefluminode, no steroids & additional folic.

He also said the pain in my thumb, knuckles & hand could be osteoarthritis, guess the xray will confirm or rule it out.

He was very nice & said I've had a lot to process by myself for the last 2 years but if there's any problems with pain before March to give rheumatology a ring.

Thank you all for your lovely helpful messages & advice, they've been invaluable, & whilst I have technically been on my own with this I've been fortunate in the help, advice & friendship I've had from you lovely people x

Ps sorry its so long winded 🤣😂 & hope it makes sense xxx

[allanah]

Wonderful, are you happy with the pitcome?

[Garnacha in reply to allanah]

Thank you, I think so, my private consultant had suggested I'd need biologics & today this consultant said at the moment the meds seem to be controlling the inflammation so no need to prescribe them yet, it must be difficult for him in one respect as in the main I've already been diagnosed & tried lots of meds so I fully understand him thinking this way.

I'm just worried that by reducing lefluminode from 20mg to 15mg as of Monday gone & no steroids ill be in so much pain, I want him to see first hand how bad it gets but also don't want to suffer lol I can phone rheumatology if needed before 17th March but I don't know how responsive they are yet.

Time will tell. On the plus side I'm already losing weight 🤣 x

[allanah in reply to Garnacha]

That's really good , well done xx

[Madmusiclover]

That’s as good as it gets. Well done you.

[Garnacha in reply to Madmusiclover]

Thank you x

[Mmrr]

That sounds like a good appointment.

[springcross]

Brilliant, I'm so pleased for you, sounds like he's quite thorough and it's great that you only have a short wait until your next appointment. Good luck with the taper. 🤞x

[Garnacha in reply to springcross]

Thank you x

[Sheila_G]

It makes absolute sense. I am glad you had such a good consultation.

[Garnacha in reply to Sheila_G]

Thank you x

[Hidden]

Hi It is great you such a thorough consultation with decisions made and a way forward. Sounds like you were not rushed either. Good to hear 🌼

[Evie3]

At last a F2F…..and a plan 🤞

[MadBunny]

It sounds like you had a very positive experience . It's good that you don't have to wait long for the next appointment and reassuring that you can ring them if needed.

[Garnacha in reply to MadBunny]

Thank you x

[CagneysMum]

Great positive outcome for you and an accessible consultant 👍👍

[Garnacha in reply to CagneysMum]

Thank you x

[madme1]

Absolutely Garnacha, I can remember thinking my, "My god, how can this have happened? Is it my fault? Could I have prevented it?" What's going to happen next? What's a flare? So many questions at a time when I felt really unwell. The only people who were able to reassure me were the people on this site and those at NRAS. I'd cared for dad along with mum for years and then was caring for mum full time when dad passed away. I lost my lovely mum in April last year, and with all the covid restrictions it was so hard. But you know what? Over time you learn who your real friends are, what your triggers are, what a flare is, what can be done about it and who to turn to. You also learn what works and doesn't work for you. I wouldn't say you accept what's happened more that you learn the best way to deal with it and how to make your voice heard. You learn to like yourself more, and think, "Yes, I have dealt with a b****y lot of crap but I've come through it." You also learn to listen more, especially to the brilliant people at NRAS and the lovely friends on this site. Sorry to sound preachy, but believe me it comes from experience, good luck.

[Garnacha in reply to madme1]

Thank you, you've summed it up perfectly So sorry about your mum & dad. X

[Hidden in reply to madme1]

I can sense what a hard time you’ve had and see you have come through it in one piece. Not easy to do so I’m pleased to read your story.I won’t elaborate with my tale but because if it I totally understand your feelings and state of mind.

Tomorrow is always a better day right! 😀😃

[oldtimer]

You can be prescribed 1mg tablets (or 2.5mg but that's less flexible) for tailing down from 5mg. I have always found it easier to reduce by 1mg at a time especially from 5mg and to do it at my own speed, sometimes every few days. And continue to be as assertive (politely) with your medical team. It's your body, you know best how it feels!

[Garnacha in reply to oldtimer]

Thank you, I did wonder whether to ask for 1mg tablets but I wasn't sure how many of the 5mg I had left, I guessed around 10, I actually had 17, the consultant said to try every other day for a bit then every 2 - 3 days till they're finished, that should give me 3 - 4 weeks so only 3 weeks thereabouts to my next appointment, fingers crossed 🤞 I manage with the pain, guess I'll have to take cocodamol or similar to tie me over x

[Fruitandnutcase]

Great consultation. Must make you feel a lot better.

[Garnacha in reply to Fruitandnutcase]

Thank you, think it's also a relief that I'm being taken seriously & also officially on the NHS for treatment now x

[Knit12]

Sounds like a good appointment and great you have follow up in March

[Marionfromhappydays]

Brilliant xx

[Hidden]

nras.org.uk/resource/newly-... You will find the above resource really helpful to you in these early days of living with RA.

You can also call our helpline 0800 298 7650 with any queries you may have about living with RA, medications etc. We're here to help every step of the way.

[Garnacha in reply to Hidden]

Thank you very much Clare, I've learnt so much from this group when I've felt like I'm on an island in the middle of nowhere, this group has been amazing with support x

[Deeb1764]

Glad to hear it went well being listened too is so important x

[Garnacha in reply to Deeb1764]

Thank you x