Feeling let down ...

[EmmaDR]

Today I had my Rheumatology appointment, it was ok he confirmed I was flaring which I knew, has said I have a lot of inflammation especially in hands so no longer controlled he’s now put me onto 3000mg of Sulfasalazine (as I can’t have methotrexate)

And I have ultrasounds on both hands on 1st of March and he has said as soon as I have had that I have to have steroid injection and keep having them every 6 weeks if I need them and see him in 6 months.

However I went in with a photo diary of my joint inflammation and swelling and all symptoms written down and it’s like he wasn’t interested he wouldn’t discuss them and I said about my horrendous dry mouth and eyes and eye twitch he didn’t even respond all I want is to be made to feel better but also just once to have a conversation about symptoms what to expect as I have never had that conversation and not be ignored and treated like he isn’t interested.

I am not happy and feel down about the lack of information I get as a patient does anyone else feel like this ?

Em x

[Someonesmother]

I feel your pain. I write letters to them. Dear such and such, I just wanted to follow up from our appointment at which I felt........ ,

at least then you get to tell them how you feel about their lack of communication. Give it a go and see how he responds.

Good luck and hope the supha works for you

[sylvi]

I am sorry darling you feel let down. Lets hope with the increase in sulpha you will feel brighter. He need the scans and things so he can target the injections for you. xxxx

[Jackadoodle]

Why can’t you have MTX is it tummy problems with tablets or could you have MTX injections.

[Hidden]

Hi I know how you feel I had the same problem with my rhuemy consultant. I told the nurse at the hospital and she told me to ask to moved to another consultant which I did and the new one is great to me. You could try that

Xx

[Tinat3]

Been there, done that! The only time that I feel I have a proper conversation is when I am feeling ok with a low DAS score!

[Lynnels]

Hi Em.

I totally understand. In the early stages that is exactly how I felt (and still do to some degree but tolerate that appalling behaviour better these days as I feel better) I think it’s a general behaviour pattern of Rheumatology departments. The nurses at my department are also dismissive and take at least 3 days to get back to you on the help line. None of this helps when you are low and trying to adapt your life to this awful disease. I once went to another consultant for a second opinion as I felt I wasn’t being listened to and was convinced they were missing something. He was lovely and did listen. However what he did say was that there was one track of treatments they all had to go down for all different variations of this auto immune disease and although he could diagnose it with a different name the treatment outcome would ultimately be the same. And he added if I’m honest with you I don’t think you’d get treated any better here as we’re so damn busy like all rheumatology departments - and that’s the problem.

All I can say is hang on there, it’s early days, and once they get the right treatment sorted for you you’ll feel a lot better about everything. If you’re still not happy further down the line ask your gp to send you for a second opinion as it’ll at least set your mind at rest

Good luck

[Matilda_1922]

Sorry you are in a flare your joints look very inflamed.

I suffer with dry eyes and mouth. Sometimes when eat something dry it's sticks to the roof of mouth.

I have mentioned this on several occasions but it just gets dismissed.

At work I need to talk to clients and my mouth is so dry that my voice starts to be come croaky.

It's so annoying

I do carry water around with me but can't drink in front of clients.

From what I understand there is no treatment for sjogrens which I think I have.

I hope you begin to feel better soon and your consultant starts to listen to you.

Matilda x

[Hidden]

Sorry that's happened Emma, sounds depressingly familiar! I know theyre busy but had blank stare myself in response to questions. Makes me feel like they don't believe you either. Your photos look sore, hope you get some relief soon x

[Fergie432]

Sorry to hear you're feeling let down, it's so frustrating when you're feeling so rubbish. Re dry eyes, I was having big problems with this, couldn't open my eyes in the morning as they were "stuck" and ended up damaging the surface of both eyes. Prescribed Gel Tears to use every night, and daytime if required - this has sorted the dry eye problem. I drink loads of water for dry mouth, soft drinks don't really help.