Wrong Diagnosis?

AnnPortsmouth

Sorry this is a long post but I'm not getting any response from my GP or hospital.

I recently had swelling come up very quickly (three days) in both my hands- one looked like a little balloon and I couldn't close my fists. I have had a knobby finger and one bent one for several years. I went to my GP hoping he'd give me a course of steroids for the obvious inflammation. I now feel I have fallen down an RA rabbit hole - he sent me for blood tests and an x ray, then referred me to a rheumatologist. The rheumatologist did a thermal scan of my hands, which DID show inflammation, and he sent me for more blood tests and x rays. I then got a phone call from the hospital saying a nurse would phone me for a consult. She phoned the next day, said I had seronegative RA, and gave me an absolute barrage of information about the meds they want me to take - steroids for 6 weeks and also sulfasalazine. The side effects of sulfasalazine seem to be horrendous. While I was waiting for a response from the hospital, my hands have gone down a lot. I am reluctant to start taking the sulfasalazine, and am just taking the steroids to get rid of any residual inflammation. They did not say why they thought I had RA - and as it is "negative" I understand that means I might not have it. I'm wondering if they have made a mistake. Not sure what to do now. This is really worrying me - I have been up all night for the last two nights because I can't sleep.

MrDJ

Hi @AnnPortsmouth

Sorry to hear of your troubles

Not sure anymore if links are allowed as ive had quite a few removed over time. this is from america but gives an idea of seronegative while you wait for others to reply https://www.rheumatoidarthritis.org/ra/types/seronegative/

Even though ive been diagnosed with every form of arthritis since 1985 its very difficuly for us mere mortals to take it all in and understand whats going on.

It took almost 2 years to work out what meds actually worked for me.

Back in 85 i was started on Froben nsaid anti inflamatory and 6 sulfasalazine a day as well as a massive dose of steroids. the sulfa continued with 6 until 2001 when i switched to methotrexate and anti tnf infusion so had to drop the sulfa to 2 a day and stuck there ever since.

As far as i can tell ive never had any issues with any of the tablets until this year when i got gut rot and was told to stop the froben anti inflamatory nsaid but continue with all other tabs.

Yesterday ive now started on a cox-2 tablet as well which is also a nsaid so a little apprihensive but will give them a go for a while.

Reading anything on the net about meds can scare the you know what out of you but sometimes the good outways the bad and its worth a try. for most of these meds they will monitor bloods for a good few months and if changes are noted then they may stop the meds.

keep us posted on what you decide.

Baloo

@AnnPortsmouth my view is that its unlikely the doctor made a mistake. Doing tests before prescribing sounds like the correct action, otherwise the rhematologist would have been hindered from making a proper diagnosis. Also the barrage of tests would be to ensure the correct diagnosis and to eliminate incorrect diagnosis. As far as I can see you are in as near totally safe hands as possible.

olivia_b

Hello @AnnPortsmouth,

Welcome to the online community! I am are sorry to hear you are going through a rough time with your diagnosis, as you can see, the members here are beneficial with their thoughts and advice on these sorts of things.

If you feel that you want to speak to someone else as well, please get in touch with the Versus Arthritis helpline on Helpline on 0800 5200 520 or email helpline@versusarthritis.org.

Please continue to post as much as you would like, Olivia :))

Baloo

@AnnPortsmouth

Actually, thinking about it, admitting your not taking the medicine takes a bit of courage. There must be a million of us out there who are not taking the medicine and got piles of it sitting around doing nothing.

I should be wearing compression stocking but gave up ages ago. There is a risk my venous exzema will come back as a result, but I haven't discussed it with anyone, and thats because it doesn't worry me. I keep my feet elevated at night and this seems to be working.

No idea what happens if you don't take sulfasalazine though.

jamieA

Hi @AnnPortsmouth

I had similar thoughts when I was first diagnosed - in my case with psoriatic arthritis which also doesn't show an elevated rheumatoid factor blood measure. Even now 4 years on from first symptoms and subsequent diagnosis there's still a part of me that thinks they might have got it wrong as there's no exact test result that confirms the rheumatologist's diagnosis. I'm an engineer so that doesn't sit right with my training.

However there's no doubt in my mind the drug treatment has helped me considerably. I was initially started on sulfasalazine but it didn't help so methotrexate was added. When that combination didn't work the biologic adalimumab was added and the combination of the 3 drugs has worked. I appreciate the downside of taking all this medication but when I think back to my first year before the rheumatologists finding a treatment that worked I wouldn't go back.

I've not suffered any side effects to sulfasalazine other than orange urine. I think steroids are good at damping things down but you can't be on them for ever and they do come with their own possible side effects.

Have you been given access to a rheumatology clinic nurse helpline - if so maybe a good idea to talk over your concerns with them. It may also be worthwhile talking to your GP. If you can you should maybe ask for a second opinion.

Emmasknackeredjoints

Seronegative only means your bloods are negative not that you dont have the condition.

Nurina

I was diagnosed with RA because I had all the symptoms but all the tests I had, including biopsies said I didn't have it.

Arciere

Hi @AnnPortsmouth

There isn’t much I can add to what everyone else has said, save to say I went through a similar process. My bloods are Seronegative but i sure as hell have inflammatory arthritis.

Just hang in there. Your frustration and concern is totally normal. Everything will be ok.

Keep asking questions here, there are lots of wise people with reassuring experiences.

Airwave!

‘zero negative inflammatory arthritis’ is a condition diagnosis in itself. It is outside of the RA definition because of the lack of markers in your blood test but is accepted as within the meaning of ‘RA’.

I have the same, it was originally diagnosed as asthma by my GP, but over 30 years of no treatment has scarred my lungs and damaged and inflamed my joints. 30 years of crying out for help and asking for blood tests! Be grateful your diagnosis has been swift?

TiredWarrior

@AnnPortsmouth

Hi, I don’t think it’s the wrong diagnosis as there are certain criteria you have to meet to get the diagnosis and the response to steroids is also significant.

Not taking medication is a personal choice but be aware of consequences. The inflammation is just a sign of the condition which is an autoimmune condition- so your immune system mistakenly is attacking your joints (& sometimes other organs too). This constant attack cause destruction and poor repair leading to deformities (we don’t see them anymore due to the quick diagnosis and treatments but look up swan neck deformity if interested)

So to stop these deformities early treatment with medication that can lower the specific immune response causing the destruction is important. Sulphasalazine is one of the DMARDS.

But the steroids work so why not take it when needed- it’s because of the side effects of oral steroids- from diabetes, osteoporosis to mood dysregulation & avascular necrosis.

It’s about balancing the pros and cons of having treatment or not, of taking sulphasalazine or prednisolone- so think things through, call Versus Arthritis helpline for advice and make the best choice for yourself

Good luck