I have been diagnosed with rheumatoid arthritis for about ten years, new doctor has now said I don’t have it. He say I have fibromyalgia and has said he will not give me anything for pain, but will see me in a year. When I asked why was I diagnosed with it in first place and put on all different types of med his answer was it might have got better.
new Doctor: I have been diagnosed with rheumatoid... - NRAS
new Doctor
Written by
Deedwards
To view profiles and participate in discussions please or .
Read more about...
42 Replies
•
Oh dear. Is that a GP or rheumatologist doctor?
it was rheumatologist doctor
Maybe NRAS helpline could advise on best way forward? I’d want to see his/her evidence for decision. Have you got the post appointment letter yet?
Did the new doctor/rheumatologist run any blood tests or did he just make that decision after examining you?
If there were no tests I would ask your GP to refer you to a different rheumatologist possibly at a different hospital for a second opinion.
After all, if you definitely have RA you shouldn’t stop your medication.
This must have come as a bit of a shock! If I was you I think I'd be asking for a 2nd opinion - presumably your previous rheumatologist was qualified?!?
yes previous doctor was qualified and really looked after me. This one only goes on my hands and says they look normal although fingers are swollen.
When you were diagnosed were you referred to a Rheumotologist?
Are you on any medications and did they work? Have you had any blood tests ? I think you need to ask questions was this the GP or the Rhuemy? Because this seems very odd and you need to get advice so I’d suggest ringing NRAS helpline to see if they can advise you especially if you still have symptoms.
I was always on meds while with my old Rhuemy doctor such as methotrexate but caused liver problems last one was retuximab.new doctor has not given a blood test .
Another thought…if you have been on Rituximab, & it is working well I know from personal experience if a new doctor just made a brief examination with no blood tests it could look as if you don’t have RA.
Before I had OA in my hands, when on Rtx they looked completely normal……I recently felt almost normal for about 15 months after a Rtx infusion, but blood tests proved RA was still active.
Hi , which blood test showed that ra was still active ? Thanks
Don’t know…..didn’t ask….rheumy emailed all OK..with date of next blood test needed.
After many years with the same rheumy keeping me steady & if I’m feeling OK I just go with the flow.
no blood test with new doctor, just looks at you, not sure what it was with old doctor
yes and have been under them all the time.
Wait unti you get a copy of the letter from the consultant (via your GP) and if it says the same your GP to refer you for a second opinion.
There are several things here that need looking into. They can't both be right. You need to do a bit of research around rheumatology in your area. Do you know anyone else with RA? Call the NRAS helpline and speak to someone there. They will help you. Good luck.
If your fingers are swollen and your in pain then you obviously aren't ok and silly doctor arguing about the "label" they attach to you is a waste of effort. Stay strong and fight for your rights.
That's a bit of a shocker, especially as you've been taking drugs for 10 years. Like others have said, wait and see what any letters say, get a second opinion and ask lots of questions.
Did you have bloods taken 10 years ago to check your Rheumatoid Factor and Peptides, although this doesn't dx RA alone? I wonder what the Dr. based their opinion on, what qualifications they had and are they still practising (see if you can google them)?
That doesn't make sense. To be diagnosed in the first place you would've had blood tests - a positive RF & anti-CCP. You can't argue with the results of those. You need to check your results in your medical records. You can't be left in pain & you definitely can't be left to let RA cause massive damage to your joints.
Golly Deedwards, I’ve just gone through a similar situation. I was told I didn’t have RA, just Osteo & stopped all drugs & referred to Osteo plus dropped from Rheumatology. Diagnosed in Portsmouth Hospital in 2011, although not living there now. I had to pester, chase to try & get back to Rheumatology. After visits to my gp the only drugs to be prescribed was strong ibrufen & steroids, not ideal long term. Then my gp seeing how bad I was contacted Rheumatology & requested I was put back on my meds.. this was over about 18months. I’m only just back on meds.. if what your Rheumy thinks is possible? ask to be referred & re tested , but your bloods will show as did mine hence Gp stepping up in my favor. Frustratingly when I returned to see the Rheumy he brushed it all off & said almost it’s procedure & at least I was there now being treated 😠. A damned painful 18 months. Get referred again by your GP emphasize on the urgency as you shouldn’t have to go through all this again to be re tested. it could be you have another AD, fibromyalgia etc I have been told that in some cases RA can burn out ie I think they mean go into remission, so changes etc are possible, but you need to know to address it, take care & keep on it to get the help you need. 🌸
I’m so sorry you are going through through this, that’s awful that the new Rheumatologist has been so dismissive!! I agree with others, get a second opinion as you are entitled to one. I have Fibromyalgia as well as RA and osteoarthritis and the symptoms are hard to know which of these is causing the pain sometimes. I hope you are able to get this sorted asap. 🤞🏻🤞🏻🤞🏻
I have been through this so many times. Several doctors have said I don’t have RA as my hands aren’t really affected. Different story with other joints. Blood tests don’t show inflammation unless I have an infection but debility and pain isn’t just fibro and osteo. I would most definitely ask for a second opinion. I’m sero negative which can be harder to treat but still RA. I’m so lucky I have a consultant who knows me and insists I see him even though my last appointment was with a registrar he even said out of the blue you most definitely have RA and consultant still popped in to see me between patients. So please don’t feel that your new doc has it right he probably doesn’t. Sorry you’ve been made to feel that way it’s not good enough.
I’m zero negative RA & it was good to read your reply. It helps me to know someone else is out there. And has the same frustrating experiences lol Thanks 
Actually it's sero positive ra that is the most difficult to treat as your body has already made antibodies against itself according to leading rheumatologists, apparently.
I wouldn't except that, ask to see someone else, and get bloods done again maybe. I don't think RA ever goes away
what nonsense! Get another opinion!
Thank you all for your support it means a lot to me. I don’t feel I am on my own anymore
Well, I don't know quite what to say about your experience! 10 years being treated for a disease you are now told you didn't have, is quite something!
There may have been mixed signals to start with - but the "markers" for the disease must have been there. It does happen, from time to time, that the disease becomes dormant - and, if you are lucky, that's the last you will see of it. That was the experience of someone I met at a clinic when I was first diagnosed (1967). She wasn't "cured" - all the markers were still there - but it never reappeared.
Maybe that is what has happened to you. It's not beyond belief.
Good Luck - I hope the RD never "wakes up".
Complain through PALS. My sister did and saw a different rheumy within 2 weeks and then got back on track. Good luck.
Sounds very odd…. I have Fibro, and RA. They can’t just leave you with nothing 😳. Amitriptyline was my magic medicine for Fibro..
Maybe book a GP appointment and have a chat…
I was told I didn’t have RA but didn’t get another diagnosis for the pain and blood results at the time. I continue to take RA medication
Hi. I know exactly how you feel, the same thing happened to me. I'd been on medication since 1997 for RA. In 2018 I moved up country and saw a consultant who told me same as you. No tests, nothing. I was pretty shocked. So a few months later I saw a different consultant in the same hospital. He told me I had nothing wrong with me and said he didn't want to see me again! I'd been on Rituximab for over 9 years. You don't get that for no reason. I wrote to my previous consultant who confirmed my diagnosis with him, and I also sent for all my hospital records. Armed with this I went back to the gp and asked for a referral to a completely different hospital, in a completely different area. What a relief, I'm at last being taken seriously. Inflammatory arthritis, and other problems too. They have agreed that I'm in remission at the moment, probably because of the heavy duty drugs I have had previously but they're not giving up on me, I still have bloods, and appointments, and numbers to call. So, if possible write to your previous medics and go back to the GP. See if you can, like me, request a different hospital. X
So glad you're in remission.
Thank you for your help, I will write to my previous Consultant who is still at the same hospital
😱 did he at least book a future appointment to check you over once off all medicines?
yes but not till June 2024
Well, I sure hope that this new doctor is correct and you don't have RA. That would be wonderful......but then you'd wonder how your other rheumatologist could be so wrong to prescribe unneededed medications for 10 years! At the first sign of trouble, if this happens, be forceful and get some help.💜
Poor you. Get your rheumatologist to help you snd change your doctor immediately. You don't need this hassle. Good luck.
Words fail me. I'd take it further and seek advice.🐕🐕🐕
Good Morning Deedwards,
The same happened to me when I was newly diagnosed, sero positive and anti CPP ESR levels as my hands did not look like sausages the particular day I had my rheumy appt when I told him I was in pain, he said well your fingers look ok. I asked for another opinion, he gave me 3 names and I picked one and was referred to him. When I went back to my rheumy he apologized to me as the other opinion rheumy was his teacher ( unknown to me) and said I def had RA, Sjogrens and was in lots of pain. Since then he has been more attentive and wiser as he was a new Rheumatologist when I was first referred. Be your own advocate, these doctors are busy and human or new Rheumatologists as in my case, so it’s easy sometimes for them to make a mistake. I also have Fibromyalgia but the pain is different for me from my RA pain. I have had it many years before the RA. Be sure to get another opinion as RA is a progressive systemic disease and he sounds rather slack in his treatment plan. Have your questions ready and visible when you see him and keep a diary. After all this is your health and you deserve the best treatments and answers with your health team. Good Luck 👍
Not what you're looking for?
You may also like...
New to UK-need doctor consultation
Hi - I have just came to UK from India. Got RA and HLAB27 in my blood as per blood test report....
New doctor, new (temporary) diagnosis
feet done.
Now I have been for my second appointment to discuss results and the doctor doesn't...
doctors
hi I have been with the same surgery for 70 years got a letter today that we’re out of their...
No doctors...
state and none take patients under eighteen years old so I have to wait even longer until we move...
Doctors...
agony this morning feel like i have been hit by a train....Hope you all have a lovely day...xxx
Confronting the Doctor
Another trip to my doctors
Disappointing doctor visit
Intrigued by the access correspondents have to doctors.
