Hello, I'm new to this forum, but have been on Health unlocked for a long time - so hi to anyone I already know from there and apologies for repeating the saga of my recent diagnosis (?) of remission.

I've had RA since 1999. By 2002 I was given anti-TNF (infliximab) + methotrexate. I retired about three years ago from quite a high-pressured teaching job and moved to Scotland where we are planning to stay for the rest of our lives. So my stress levels have recently fallen quite a bit. Back in October (a day after my father died - so not a good time) I was told by the consultant that I might be developing lupus and anyway I was in remission. No chance to discuss, she was going to remove all my meds. So I argued as much as I could in the circumstances, and she allowed me to have the next infusion but that was going to be it she said. I left with a lot of unforumulated questions which I then wrote to her in the form of a couple of letters. No really satisfactory response, just an appointment with a rheumy nurse who thought I should see the consultant. So, I took some advice and asked to be transferred to a different one who I saw at the end of January.

This new person, Dr A, gave me a thorough examination, took bloods, asked a lot of questions and booked me in for an MRI scan of my hands which happened on Wednesday of this week. She rang me yesterday (!!) to tell me that she already had the scan results which were excellent and showed that I had no inflammation and that, along with blood tests also done on Wednesday, confirmed that I was in remission. She wanted me to have time to take this in and promised an appointment with her shortly.

So! here I am wondering how to prepare for the appointment. I have a lot of questions - apart from the psychological adjustment about being in remission. Does anyone have any advice about what to watch out for?

So far, I want to discuss the fact that I still have pains which I think she will say are about Osteoarthritis.
I'm still taking 25mgs of methotrexate a week and am wondering - if she suggests we withdraw this - should I ask to do it gradually and by injection? I'm thinking that OK being in remission while still on medication isnt the same as being in remission without any ! Its a bit like having the safety net removed.
And I still have a lot of fatigue. My partner has been working away from home for a few years now and this is coming to an end next week, so perhaps depression linked fatigue might be part of the reason for this.

Anyway, I have a lot of other questions and thoughts but will be contributing to this forum in future and look forward to getting to know others!

I was under the impression that once you're in remission you stay on the dmards to KEEP you in remission so I'm mystified that there is a suggestion that you come off altogether. Is the consultant saying that they suspect it's lupus and not RA at all or are they saying you may have Lupus too. Maybe this is relevant and they want you to try medications more suited to Lupus instead. I think I'd have as many unanswered questions as you if I was in this situation and I think you deserve some answers. Could you write down a list of questions for the consultant and put them in a letter? Do keep us posted on what happens. I wish you luck with it all and hope you manage to stay in remission. best wishes from Naomi.

Hi Cathy,
I'm a frequent visitor to Health Unlocked so know your story from there.
I too am in remission, only as Sylvia says because of the MTX and Hydroxy, no one has ever suggested I stop the drugs. I still have a few niggles, fingers, feet, knees but they are only niggles.
It seems as if you are now receiving good care and they are trying to fathom out your problem.
All the best.
Mary

hi Cathie,

it's great news that you are in remission .. but i am also puzzled as to why your drugs would be stopped?

the fact that the drugs are working for you is what has made you become in remission! i am in Clinical Remission but my drugs have stayed the same since then and will continue too.

unfortunately i have awful Osteo-Arthritis in both knee's which make's me disabled in the fact i can't walk distance, but i know that's wear and tear that can't be un-done.

why not give NRAS Helpline a call, i found them very helpful in the early days, as i know you are feeling confused by all of this. is your Rheumy Nurse a good support as well or perhaps your GP.

i think fatigue is a factor of RA whether in remission or not.

keep posting and let us know how things are going,

Suzanne

Hi Cathy,

Thats good news about your results.

Remission I believe is usually clinical remission which means you still have RA and not cured but that the disease is under control and shown as symptomless (though might not be 100%!). So in my mind you would still be on drugs and usually if somethings working they will leave you on it unless theres a good reason not too. I think probably the other doctor was a quack.

Good idea to get together a list of questions. I suppose my main questions would be about the strategy for your medication and care. Remember you are your own CEO and are in charge of your life and body so ask the questions you need answers to. At the beginning I would bring my partner to my consultations as I found it hard to absorb the information so think of doing that. I also changed hospitals because of the way I was treated and have a consultant that I can work with and so its less stressful. So good for you for taking control.

All the best