Diagnosed wrong?

[My123]

I'm so confused about my diagnosis and I cant stop thinking I've been diagnosed wrong , basically I was diagnosed with rheumatoid arthurites in april , started treatment about 7 weeks ago now on sulfasalazine 2 gram a day , I only have pain in my left index finger that's all no other joints are really sore, could I have been diagnosed wrong ? Why is it only 1 joint that's hurting just that one finger ? I have been taking naproxen for this sore finger but that's not helping the pain in that 1 finger ? Has anyone else had similar experience? What should I do ?

[JFlay]

Hi, I assume when you were diagnosed they did all your blood tests, x-rays and ultrasound? the rheumy's look at all of those along with examining your joints and taking a history from you to arrive at a diagnosis. I have most of my pain in both my feet and one little toe is the worst! some hand and general stiffness.

I think we are all both similar but different with this condition! never quite the same! It will probably take quite a few more weeks for the Sulfa to work fully. Maybe ring your rheumy helpline for advice/reassurance. All the best.

[Stayloose]

Sulphasalazine is a mild drug in the whole arsenal of drugs for RA so if they change their minds about the diagnosis, no harm done. If not there are other drugs to add. I hope your finger quietens soon.

[woodstar1]

Sounds like they caught it early and can start treatment before it takes hold.

Good luck with it.

[Tattoo72]

Hi there , if you had a blood test specifically to test for ra and results come back positive that’s probably why they have started to medicate you before the disease starts to affect a lot more than one finger . It’s only the beginning and the medication that has been prescribed to you is very mild . Good luck hope you sort it out

[Fra22-57]

I know its shocking when you get a diagnosis you are not expecting but you only have this very mild so the rheumatologist is trying to slow its progress for you.On your next visit ask for more explanation or ring the nurse helpline.If you don't agree you can ask for a second opinion

[Shalf]

Hi, I was diagnosed with seropositive RA following a physical examination plus blood tests of my swollen and very painful right index finger.

I also had pain and stiffness in right shoulder which I was being treated for, wrongly diagnosed as a frozen shoulder and given physio therapy. It is indeed a confusing illness. There is no definite pattern but usually starts in the hands/wrists as that is where approx 25 joints live together. My right hand still suffers greatly today. Diagnosed 3 years ago.

[Kerensa21]

I’d email advice line & ask for copies of letters to GP (or ask gp for copies) which should explain reasons: you are entitled to be kept informed& inmho they’re not v good at explaining disease or treatment on initial diagnosis. It is a daunting diagnosis & I went all around the houses trying to think of anything else it could be ☹️ All the best x

PS most of the dmards take up to 3 months to be fully effective

[Linz2209]

I’ve got pain in one of my fingers, around the knuckle. I haven’t bothered the GP but might ask on my next appointment. If it is rheumatoid that you’ve got I would’ve thought naproxen would help unless the dose isn’t high enough

[My123]

I have no pain anywhere else. Its now just that 1 joint in my finger

[JDQuinn75]

Usually if you have rheumatoid arthritis it affects both sides de of the body not just one. Now osteoarthritis doesn’t affect both sides at the same time. I was diagnosed with that four years ago. Osteo can get aggressive as well. Osteoarthritis only affects areas like your should joints, knee joints, hip joints plus fingers and the spinal area as well. It sounds to me like that you have OA and not RA .

[My123 in reply to JDQuinn75]

How common is that though of your 26 ?

[My123 in reply to My123]

If *

[JDQuinn75 in reply to My123]

Most of the time . It doesn’t matter what age you are . Rheumatoid acts differently from osteoarthritis . Plus rheumatoid can affect organs as well . Osteoarthritis doesn’t do that. But neither form is pleasant to deal with. I now have mine in my shoulders , knees , spine feet and hand as well. It all started in my hands six years ago. That’s when the signs started showing. Actually my hand and feet the first year. Then it went to my shoulders and knees. I now have it all down my spine as well . It’s been in my spine for about 3 years now. When it get in the spinal area that’s when you’ll notice that the aching is constant. Mine is always there especially in the middle of my spine . I now have it in The lumbar, thoracic and cervical area of my spine. Yes it is painful as well. Some days more so than others.

[Mall in reply to JDQuinn75]

At 26 years old it is very unlikely to osteo arthritis and really you shouldn't be making such a diagnosis on such little information in contraction to medics who have the full facts, tests results etc..

[Mall]

Sounds like your drugs are working if only one finger is sore. Hopefully your finger will settle down soon too.

[Elmo333]

Hi there. I had literally one knuckle on my left hand that would flare up and down in pain (not really swollen). That was it for a couple of years. My inflammatory markers were always raised but we ignored it. THEN my whole hands suddenly had times of being so painful and was diagnosed with seropositive RA. Now I have lots of painful joint episodes all over and taking methotrexate and hydroxychloroquine. I know sometimes the treatment can seem heavy handed but it’s probably a good thing if the rheumatologist is certain enough to diagnose that early and start you on treatment. Good luck x

[Vonnie10]

I wish it was just the one finger ...

[nomoreheels]

For a direct answer you really need to discuss your concerns with your Rheumy but you can check back on your timeline to possibly reach a conclusion beforehand. Doing this may also help you draw up a list of bullet point questions to ask your Rheumy at your next visit.

Think back... what prompted you to see your GP initially? What were his thoughts & which tests did he order, bloods etc? What did he say when he discussed referring you to Rheumatology? What were the pointers that suggested he considered it appropriate to see a Specialist? When you saw him at your diagnostic appointment did your Rheumy examine you, perform tests/imaging? Did he comment on specific joints? What was his resulting conclusion? Were you diagnosed seropositive or seropositive? Why did he choose sulfasalazine as your first DMARD? Did he discuss what options there may be for you further down the line if it fails to control you? Lots of questions but it might be prudent to see if you have a result prior to asking your Rheumy. Not that it's right but many old school Consultants (should yours be one) don't like their diagnosis questioned.

Usually if it's not clear if you have RD or another inflammatory condition a course of corticosteroids are prescribed, to see what the reaction is. Did your Rheumy do this?

Whilst it's more common to be aged 40 - 60 for symptoms to be noticed it's not unheard of to be diagnosed earlier. In fact we have a few members around your age, maybe if they see your post they'll be along to share their experience of being diagnosed. Do remember though, & I'm thinking of a couple specifically, they may not be around often as they're doing well, one is in remission, but some do pop on now & again.

Rheumatoid Arthritis/Disease can present differently in people though so not all our experiences may mirror yours. When I first went to my GP it was because my feet hurt & were swollen, I had no other joint involvement at all. I was diagnosed early, only 6 weeks after the first sign of problems. I was prescribed hydroxychloroquine.

SSZ, whilst less commonly used as first line treatment is nevertheless a DMARD, they're not prescribed unless they're thought necessary so it would seem your Rheumy was confident you have disease activity. Your dose is lower side of norm, 500mg daily is usually the starting dose, increasing 500mg weekly to a regular dose of 2000/3000mg (2/3g) daily. It's feasible that you have little joint pain because 2g is working for you, even after only 7 weeks. You may know but usually DMARDs can take anything up to 12 weeks to work fully, sometimes more, but often we feel improvements just weeks in. Should you be required to halt it you may find more than your finger causing you grief. You don't mention if your wrist is ok now, has the pain eased in the joint? It could maybe be that SSZ was chosen over say methotrexate (the commonly prescribed initial DMARD) because you don't have an aggressive form, or simply that you were diagnosed early on & he didn't think MTX was necessary. We're reminded that the earlier we're diagnosed after early symptoms the better the prognosis so it could be that you're in the fortunate position of not needing anything stronger than SSZ, hopefully it will control you for a good while.

That you responded to naproxen confirms you have inflammation, that could be due to RD. I don't really like asking this but do you think you're being sensitive about your diagnosis, a bit of being in denial going on? Some people go through a grieving process, it could be your way of just not wanting to accept that you have a diagnosis & will more than likely need some form of med or another & a change in lifestyle for life? Questioning & denial isn't unusual, in fact it's normal to question a life changing diagnosis.

I hope my viewpoint is of help, sorry if I've upset the apple cart but sometimes another angle of approach helps. Hopefully your Rheumy will be able to sort your worries out. 😊

[Evaibrahim60]

Hi, my blood test showed I have RA in 2013 but then was told it was falsely diagnosed. At this time I only had a few flare ups per year where my fingers swelled an very painful also stiff. Early this year was told I had lung fluid and had to be taken out and checked, the result was that it consistent with RA. Also blood test revealed I had latent TB which has to be treated before receiving RA treatment. If I went 2013 and asked for second opinion I would of been ongoing treatment by now avoiding more and stronger flare ups. So please check again before final opinion to avoid more pain.

[Hidden in reply to Evaibrahim60]

I was told 8 years ago that I didn’t have RA even though my gait had changed and my feet were so stiff in the morning and the fatigue!!!! And constant flu. 5 years later was diagnosed with RA feet in a bad way knuckles now deformed. RA was doing ok until Christmas but has been rampant all this year .

[Evaibrahim60 in reply to Hidden]

Sorry to hear that is the case as it looked with me my fingers are deformed and I did have the stiff feet in the morning before finally confirmed it was real that I have RA.

[Coriander18]

Just wanted to say I was diagnosed with RA before I had any pain. I went to my GP for something else and asked her as a side line whether it's worth consulting about a lump I had on the back of my leg on the joint above my heel. Her response was that she didn't know whether to send me to a rheumatologist or a surgeon. I said, "You're the doctor, you decide".

She rightly chose the Rheumy and I was diagnosed within three weeks, having had a bone/join scan, ultrasound and blood tests.

Big shock to find I had Inflammatory arthritis and I was put on Methotrexate straight away.

Didn't start having typical RA symptoms until about 9 months later when I had my first flare. Gradually diagnosis changed to the more specific one of RA (seronegative).

I've read that the long term outcome is better the sooner you start treatment, and I've certainly been blessed in once I started a biologic having 6+ years almost feeling I've not got the disease. Though just before I started the biologic (DAS 6.3) I thought I wasn't going to ever be able to walk round the block or prepare a meal again and even ensured my work pension would kick in earlier should I need to finish work!

In the UK there is a pathway for doctors to follow so that inflammatory arthritis is treated early as the research shows better long term .

A biologic pharmacist came to talk to our RA group, and said how exciting it was that a group of people who had a biologic as first line treatment went into remission fairly quickly and so were taken off it and are now just being monitored in case the disease can back.

My neighbour opposite had a form of inflammatory arthritis and was on sulfasalazine for 3 years and he's been off that 3 years with no return symptoms.... so being treated early works for some. I think I was lucky to be treated early compared to 3 other people diagnosed at the same time as me, but already had had the disease for much longer (who I know through the group I attend). So I admit I'm biased towards early treatment knock the RA hard.