Appointments keep getting cancelled

rollsaroo

Hi, I'm new here and based in NI.
I'm 31 and have a diagnosis of psoriatic arthritis and joint hypermobility. I'm really struggling with pain management, I keep having joint injections cancelled (3 times in 3 months and won't have seen anyone in the last 9 months).
I'm currently on sulphasalizine and celecoxib, cocodamol mostly helps DMARDs is doing zero. My consultant is not considering biologics despite my best efforts, instead recommending pregnancy so I'll go into remission.

I currently work full time but I'm struggling with exhaustion, limited mobility and fatigue and hoping gif some tips or advice in navigating dealing with my consultant (through NHS).

[Deleted User]

Hi rollsaroo,

Welcome to the forum, it’s great to meet you.

You have psoriatic arthritis and currently it’s pain that is causing you most concern. I don’t know how long you have been diagnosed but I do know it’s around 12 weeks before you expect to notice a difference in any change of DMARD's (disease modifying anti rheumatic drugs). Even so flippant remarks about pregnancy aren’t going to fill you with confidence with your consultant. I’m glad you are noticing a benefit from co-codamol

Keep requesting those steroid injections. They don’t work for everyone but when they do work they can be brilliant.

This is a link to the inflammatory arthritis pathway, you are already well along the route but it gives you guidelines on how regularly you should be seen and has some links that may be helpful to you.

https://www.versusarthritis.org/about-arthritis/treatments/the-inflammatory-arthritis-pathway/

This is our information on pain management which covers many more things than tablets, hopefully you will find help here too, I have some favourite distractions and have worked out ways to get the best nights sleep or maybe rest that I can because that means I can cope most days.

https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

Let us know how you are getting on, keep asking questions of us and your health team, it would be great to hear of any possibly changes in the was arthritis is treated in NI compared to England.

Take care
Yvonne x

rollsaroo

Hi Yvonne,

Thanks for replying, I shouldn't expanded on some of those details.

I've had the diagnosis since March 2018, and I've been on DMARDS for 6 months now and I'm just struggling with understanding what my treatment plan is.

Thanks for including the links, it's difficult to keep positive when living with pain all the time. Working full time is not good anymore but I feel like if there's a lack of understanding how it affects me in my place of work.

From what I've seen I'll have a lot of difficulty getting near biologics in the next while and need to be better at advocating on my own behalf.

Thanks B.

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helpline_team

Hi rollsaroo,

Sorry to hear that you’re not having the best experience with your consultant. It is good hear that you find co-codamol helpful.

Yvonne seems to have covered it. Keep pushing for a review of your medication and treatment. If need be, and if possible, ask for a second opinion. This way you may be able to get further support.

Do look through the links provided by Yvonne for further information. If you’d like to have a chat with one of our advisors over the phone, please don’t hesitate to give us a ring on our helpline number: 0800 5200 520.

Best wishes,
Sharmin – Helpline Advisor 😊