Feel you’re not being listened to

Kayleigh33

Hi, I have Rheumatoid Arthritis, I recently had a Rheumatology appointment with the consultant, but it seemed like she just wanted me out the door. She barely spoke to me about any pain I'm experiencing and she rushed the physical exam. She even told me I’m not swollen and was trying to get me to agree that I’m not swollen before she touched each joint. It had been a year since my last appointment and the next appointment is booked for another years time. I’m currently on Filgotinib which is also difficult because it’s a new medication that none of my GP’s have heard of and it’s not even on the GP’s record that I'm taking it. Despite what the consultant said, I am experiencing pain and aching daily, as well as fatigue. I’ve also been diagnosed with dry eyes, which can apparently be caused by RA and now the GP also suspects i have another autoimmune condition. I’m unsure on what to do from here. Has anyone else experienced anything like this? Should I try and contact rheumatology? Is anyone else on Filgotinib? Does anyone else have two or more autoimmune condition that can offer advice on how to manage or even tell me what that means for you? Thank you for any help or advice in advance

noddingtonpete

Hello @Kayleigh33 and welcome to the Community. We are a friendly and supportive group and I hope that will be your experience as well.

I understand that you have rheumatoid arthritis and that you have been prescribed Filgotinib and looking for advice on how to manage. I am sure that others will connect with you to share their support, but in the meantime have a look at the following from our website.

https://www.versusarthritis.org/about-arthritis/treatments/drugs/filgotinib/

and

https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

Please keep posting and let us know how you are getting on and I am sure others will connect with you soon.

With best wishes

Peter (moderator)

LouH00

Hi @Kayleigh33 , I had a similar appointment with a nurse specialist. My appointment should have been cancelled due to staff sickness but admin didn’t call me. I turned up to the appointment and was fitted into another clinic. I felt like she wanted me out of the door and at the time thought it was because I was an extra person added to the clinic. Her joint assessment was very different to any other person I had seen. When I explained about pain she dismissed it and said there was no sign of active disease because I could make a fist 👊. My main issue is my feet and all she did was take one look and because there was no obvious swelling she again said I had no active disease.

Please trust yourself and how you feel. I pushed back and the nurse suggested an ultrasound to confirm I didn’t have active disease. The ultrasound revealed active disease and bone erosion in my feet. The consultant explained that some assessments are subjective so ultimately I was right and the specialist wasn’t quite right on that occasion with her assessment. I wish I had pushed sooner for the ultrasound rather than just wait for my next planned consultant appointment in pain.

Magiciansgirl89

Hi, I am having exactly the same issues by the sounds of it. I have been diagnosed with Peripheral Spondyloarthritis and have been prescribed Sulphasalazine. This medication is not something my GP is able to support and so far the side effects far outweigh any benefits. I am in constant pain and extremely tired all of the time. My Rheumatologist only sees me every 6 months for a 10 minute appointment and doesn't have time to answer any questions or to listen to my concerns. I don't feel like I am on the right treatment and I am not 100% clear on the diagnosis itself. I really don't know who I am supposed to contact for support.

I really do empathise with your situation and hope that you find a way through this.

Trish9556

Hi @Kayleigh33

I really do sympathise.

I had a conversation with the senior GP at my surgery one Friday morning in may, after being unable to sleep for a week and unable to get through to the surgery. Her response to me was well you have Arthritis so you should be used to being in pain and will have to live with pain for the rest of my life and there was nothing she could do for me. It's a good job it was a phone appointment is all I can say.

I now have a very good GP who has promised to look after me and so far has delivered in that promised.

I had another appointment with the practice physio last year after being in a lot of pain in the wrist I had trapeziectomy on in 2020. She told me I couldn't possibly be in pain as I'd had surgery on it. A year later, in even more pain, my nice GP had my wrist x-rayed with a diagnosis of osteonecrosis in my wrist so now I have an urgent referral back to my surgeon for that.

I refused to see that physio when my hips went and opted for a referral to the msk team. I now have a referral to a private hospital in the NHS for my hips, referred last Monday and my appointment came through last Friday. The msk physio also phoned me straight back after that conversation with the Dr and helped me and said I dont have to live in pain.

All in all there are two people, the lead GP and practice physio that I will flatly refuse to see ever again.

If you dont get the help you need keep badgering your GP or your consultants secretary until you get some help.

Good luck!

Trish xx

jamieA

Hi @Kayleigh33 @LouH00 and @Magiciansgirl89

When I was first diagnosed with psoriatic arthritis in 2020 the consultant I was put under could not have been less helpful and my GP was just as bad. By my 3rd consultation I'd written a letter to the consultant detailing my concerns about his lack of assistance and finished it by stating if he wasn't prepared to help me I wanted to be referred to another consultant. I've now a different consultant who couldn't be more attentive. Similarly my GP was less than helpful and I've now moved GP.

I've realised over the last 3 years that I need to fight my corner and assert my need for treatment when required. There are many people I've come across in the NHS who have been helpful but there are also a significant number who seem indifferent to their patients suffering. I'd echo what @Trish9556 has said badger them and if you don't get help put your complaint in writing to the consultant/GP. That way it becomes official.