NRAS
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Why do I feel so down :(

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

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I feel same with my consultant one day I told her about my hips pain she said it’s nothing I feel very bad I think they have allots off patients to deal with every so they should be quick

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Yeah but then you are left without answers you need to know about your health :( x

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Hi Emma

Sorry you're having such a tough time of it!

Firstly the dry mouth and eyes....sounds like Sjogrens syndrome to me. Quite common amongst RA patients. I believe there's a test for this and I'd be raising the issue...maybe with your Gp if your Rheumys not listening.

With regard to being informed I personally have been well catered for. Shortly after every Rheumy or nurse appt I get a copy of a detailed report...the same one that's sent to my Gp. It's basically a summary of everything that was discussed, meds, treatment plan, bloods etc.

When I hear of experiences like yours I realise how lucky I am!

Paul

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Since being diagnosed I have seen a number of different Rheumy consultants, with varying degrees of ‘bedside manner’. I saw one for about 2 years and she was absolutely wonderful, nothing was too much effort to explain and she was super - alas she left to have twins!

If you are not happy with the level or manner of treatment you receive, why not contact the hospital’s PALS team (Patient advice & liaison service). I believe all hospitals have one and they act independently to identify and streamline any areas that require improvement. They will also help resolve any issues. I have found them extremely helpful and very nice to deal with.

Here’s a link to some info:

nhs.uk/chq/Pages/1082.aspx?...

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Hi Em. I have dry mouth from sulfasalazine, but I overlook it because of how horrible I felt on mtx. I use a mouthwash, toothpaste and lozenges for dry mouth to help with it and a lot of omega-3 for dry eye.

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The rheumatologist in my health plan are unfortunately overbooked so it takes a while to get an appointment, but once there she takes the time to address all my questions. I travel an hour (more with traffic) but worth the time for I am comfortable in her advice. If possible try out a different rheumatologist, ask around for recommendations. It is so important to have a doc that cares, and it's their job to listen and educate you!!! Especially when your symptoms are from your autoimmune disease. It's been my experience that the doctors that ignore their patients concerns/questions is because they can't be bothered or don't know....either way time to find someone else. This site is full of generous people willing to share their experiences and knowledge......doesn't replace a good doc but helps. Feel better :)

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