miffed!!

[J1707-]

I had a letter last week with the results of tests to see if I have RA or PsA. Rheumatologist has said it’s RA even though I have PsA symptoms.

My hands show extensive grade 2 synovial thickening on both my hands and wrist . Right hand worse and changing shape. The wording of the letter made me mad . I have tried so many drugs some not worked others I either allergic or they caused other problems. He said if I wish to continue with extensive treatment to contact his secretary. The next drug is ritumixab I can’t get funding for PsA drugs. He made it sound like it was my problem. I’ve always gone with his suggestions and tried what ever he suggested. The fact I have damage to my hands obviously means I need treatment. . I’m struggling at the moment with various joints/tendons and enthitis. Perhaps I’m a bit sensitive.

[Biofreak]

You're not sensitive J. It's your doctor that is insensitive. As you say, of course you need treatment. Sometimes doctors make you feel as if your Illness is your problem when it's their job to alleviate the symptoms of your illness. I would definitely get back to his secretary and tell her that you want him to help you further and that you didn't appreciate the tone of his letter. He has a duty of care and needs to get off his pedestal and do his job. Xx Rant over xx 😘

[Marionfromhappydays]

I would mad really quite mad if I'd received that letter.

Do they think you are trying these drugs as a jolly?

Their dismissive reply is not constructive and they as the "experts" should be (as the NICE guidelines state) be working as a team with you to construct a care plan.

I'd wonder what the costing would be between drugs and maybe it would be beneficial to keep you under a generic diagnosis of inflammatory arthritis, seems short signed to cut off other possible drugs(not that I know the criteria needed for these drugs but hey).

Keep on keeping on, its not their hands that are suffering. Keep going xx

[Madmusiclover]

You could ask your GP to get referred to a different Rheumy or ask someone at the hospital if you could see someone else. Not sure who you would ask. Maybe GP could advise? I once complained about a nurse and said I never wanted to see her again, I never have! Keep going warrior.

[springcross]

I wouldn't say you're sensitive J. I agree with biofreak about going back to his secretary and also, maybe contact NRAS for advice. Good luck.

[Bagpuss2021]

Hi, Sorry to hear about your letter. I myself have tried so many meds for RA both oral and injectable, and nothing has worked. I had my first IV infusion of rituximab this week, and need a 2nd in 2 weeks. like every medication it is going to take a while to work, and I can tell you I am keeping my fingers firmly crossed and hoping infusions are the one that works for me. I am so fed up of being in pain. Will keep going with infusions until I find the one that works if rituximab doesn't work for me. All I can say is anything is worth a try, and infusions are not as bad as everyone thinks. Good luck with everything.

[wilbertjellyfish]

The constant pain coupled with constantly having to advocate for yourself gets to us all. Sometimes we just don't have the energy to fight and we can all misinterpret the sentiment in letters. Doctors are there to give us options it's always our choice what treatment we take.

Take a few days then contact them for a face to face....if you can get one.

I don't get bogged down in my specific diagnosis as the treatments all seem to be similar either way.

[Hidden]

Nope. He sounds rude.

Hope you get better help soon. Maybe ask for a different Consultant??

[J1707- in reply to Hidden]

I have always had a good relationship with him and never had this tone of letter before… I will talk to him

[Hidden in reply to J1707-]

He may have been having a bad day I suppose, or not read it through before sending…

Hope it all works out.

[cyberbarn]

I wonder if it would be an idea to contact PALS and ask for help with this. They could get onto the consultant and secretary and explain how the letter came across. And it might be that others have contacted them about these letters too.

My son got a similar letter from his gastroenterologist. I wonder if this is a new template that they are using which they think will encourage patients to not bother having another appointment thus shortening waiting lists.

Mind you, if they really wanted to shorten waiting lists the doctors wouldn't all be going on strike!

[Hidden in reply to cyberbarn]

They are protesting against understaffing. Asking nicely on repeated occasions hasn’t worked…