seronegative inflammatory arthritis, symptoms have diminished - should I still start methotrexate?

[Joannahopkins]

About 8 weeks ago, I was diagnosed with seronegative inflammatory arthritis. The joints in my fingers had been red, incredibly swollen and painful consistently for two months leading up to the diagnosis. As seronegative, all my blood results came back as normal but apparently this can be quite common. My consultant prescribed methotrexate, it took me a while to process the diagnosis and treatment plan and I’ve been apprehensive about starting the methotrexate and have put it off. However, my flare up has since subsided and my fingers are pretty much back to normal so I’ve made the decision to not start the methotrexate in the hope that it was a one off flare up and will go away on its own (wishful thinking?). A rheumatology nurse called me yesterday and although supportive of my decision, naturally she felt that avoiding the treatment was a risky approach and could result in permanent joint damage later down the line (she mentioned that even one flare up can cause significant damage).

Has anyone else been in this situation?? I’m not sure if I’m in denial. I think being seronegative doesn’t help as part of me isn’t 100% convinced it is inflammatory arthritis (even though all the symptoms presented points to it being that). Where I don’t have any symptoms at the moment, I’m reluctant to start the methotrexate however I’m also aware another flare could be imminent and the sooner you start the treatment the better. Would love to hear thoughts or similar experiences!

[Fruitandnutcase]

When I was first referred to rheumatology I commented to my GP that my fingers didn’t look lumpy or deformed and he said if people are treated early enough then there is no need for their fingers to be like that.

I also have sero- negative inflammatory arthritis but I was started on a three month tapering course of steroids which overlapped with hydroxychloroquine. I’ve never ever had a flare - I just didn’t have the strength to pull plugs from the wall, my hands felt ‘weak’ and my fingers and especially the base of my thumbs hurt .

I didn’t realise that methotrexate was a ‘first line’ drug but obviously I’m only an expert in my own case so I could be completely wrong on that. I’m sure someone who knows more will come along and tell you.

[helixhelix in reply to Fruitandnutcase]

The first line drugs are methotrexate, hydroxychloroquine and sulphasalazine - either individually or in combination. The rehumatologisy will proposes what he/she thinks best suits the patient.

I did read one study which I have never been able to find again that said if people with early arthritis took lifestyle changes seriously they could stop more flares triggering. It was only a small study but showed that stopping smoking, getting to or staying at normal weight, sleepimg well, limiting stress and daily exercise were linking to smaller number of flares.

[Fruitandnutcase in reply to helixhelix]

Gosh that’s interesting helixhelix, I always thought hydroxy was the starter drug. But then I probably never really thought about it 😉

You’re right I think they all have their own ideas. I remember years ago the guy I saw was talking about stopping my hydroxy - he was also thinking of stopping the pharmacy assistant at my GP surgery. She was not impressed, I wasn’t sure because I’d say I have no real symptoms - well nothing really bad. At my most recent appointment I asked about stopping and the woman I saw was horrified!

I stopped my alendronic acid because I felt so ill and while she was trying to persuade me to start it again she muttered something about not being able to see how I couldn’t take alendronic when I was taking hydroxy - as if they were both on the same scale of nastiness.

Interesting about the lifestyle changes because I’d say they all apply to me so maybe healthy or fairly healthy everyday habits are what’s keeping flares away.

[helixhelix in reply to Fruitandnutcase]

I’m sure that my lifestyle changes have helped me tolerate the drugs and have helped them to work as well as they (normally) do.

[AgedCrone in reply to Fruitandnutcase]

Back in the 1990’s my first rheumatologist was a believer in softly softly using only one drug at a time. He started me on prednisolone …but that had really nasty side effects for me….so never again.

He then prescribed SSZ….disaster for me…..but eventually Mtx did the trick & like you I have very few flares.He also recommended “no smoking, moderate alcohol intake & plenty of gentle exercise ..then just get in with living….don’t let RA rule your life”.

OK….not too scientific ……however it works for me….but my downfall has turned out to be OA in my hands … &they are a bit of a mess…but they are not too painful…..so I just think you can’t win all the time…..& I consider myself very fortunate.

[Fruitandnutcase in reply to AgedCrone]

Good advice from your rheumatologist. I’m sorry your hands have gone to pot. Even if they are not painful I bet they make life difficult. My hand hadn’t been the same since I broke both bones in my wrist in 2020 then developed CRPS. The fingers have remained curved which can be surprisingly awkward at times. I don’t think it’s RA or even osteoarthritis- it’s just how they’ve ended up but I’ve got Dupuytrens on the little finger of my other hand so although the fingers on that hand are nice and straight my pinky stops that hand from flattening out so between them both I haven’t got a decent hand. I should have gone for the ‘big Dupuytrens op’ but I was such a wimp I opted out and over the years things have only deteriorated.

I agree you can’t w8n all the time and I also feel very fortunate ☀️

[AgedCrone in reply to Fruitandnutcase]

Actually I just had a carpal tunnel decompression procedure, on my R wrist…& my two worst affected fingers on that dominant hand are getting much more useful.I have much more control in my hand. I can now unscrew lids on jars & unscrew my toothpaste tube…but still can’t use a corkscrew on a wine bottle!

I too fractured my left radius…about5 years ago, & that wrist now measures 21cm against my right which only measures 16cm…but so what? Therec are far worse things in life…so I just put it down to that wretched DOB, But realistically…on a winning streak so far! 👍

[Fruitandnutcase in reply to AgedCrone]

Indeed there are far worse things in life. DOB or as my other half says ‘too many birthdays’ has such a lot to answer for! That’s quite a difference in size isn’t it - my wrists haven’t thickened at all which surprises me because when my son was about ten he broke both wrists in an accident and his wrists were much thicker after that.

Way back in 2005 I broke my other wrist - a freak accident where I actually sat on my wrist when my feet went out from under me on a rocky shore while I was trying to stop the camera in my other hand getting damaged - similar sort of break but the A&E consultant at the hospital - he was pretty horrible to the young doctor dealing with me - told him out loud for all to hear that he ‘shouldn’t be peering at X-rays!’ Then he turned round and boomed at me there was nothing broken and I could go.

At that point I was in agony, was being sick and couldn’t stand up, couldn’t even sit up to be honest. I had been carted off to hospital in an ambulance. As I was being discharged - well thrown out really - I sort of squeaked ‘could I have a splint or something’ and got a Velcro wrist splint and off we went. We arranged the car seat so that I could lie as flat as possible for the journey to Glasgow but boy did I feel awful.

I had to do something with my NHS app the other day and it has now given me access to my medical notes so I had a fun session going through them and discovered I had actually broken my wrist back then!

It was obviously nothing like when I broke both bones in my right wrist recently - that was a horrible break and I couldn’t move my fingers until it was manipulated back into some semblance of shape - that hurt but I didn’t feel faint and I wasn’t sick. Just goes to show that a broken wrist can heal fairly normally without a plaster cast. Suspect it was just luck though.

So when the triage people asked me this time how painful it was on a scale of 1-10 I opted for 8 because a 9 means I feel so faint that I can’t stand up and a 10 means I’m vomiting. The lady who kept replacing my plaster casts said if there’s one thing that gets her irritated it’s when she asks someone about their pain level on a scale of 1-10 and they say 11, or 12 or more.

[AgedCrone in reply to Fruitandnutcase]

My NHS medical history reads like a Fairy Story…..I have no recollection of half of the ailments I am accused of having….some on dates I didn’t even live in the UK…let alone have NHS treatment! I found one when I was in hospital having a procedure that according to my NHS record I’d already had previously.The surgeon assured me afterwards it was definitely incorrect….but I couldn’t get it altered.

[Fruitandnutcase in reply to AgedCrone]

Exactly what I found! I would have thought I would have remembered if I’d been a former smoker for a start. It’s weird isn’t it and like you say there isn’t anything you can do. No wonder they give you a warning about what you might discover and how it may upset you,

My most recent rheumy check up was at the hospital, face to face with the rheumy yet when the letter to the GP finally arrived it says that we had a telephone conversation and that I gave certain permissions - can’t remember what for but it was a complete load of rubbish. As was being weighed fully dressed and my height being measured with my shoes on, the whole idea of measuring your height is surely to see if you are losing height. I’m thinking of turning up wearing progressively higher heels/ platform soles and becoming a medical miracle 🤣

You have to wonder about all the paperwork and red tape that is grinding doctors / NHS down when so much of it isn’t correct.

[smilelines]

I would probably hold off on the methotrexate if you are back to normal. I think there is a type of reactive arthritis that is brought on by a virus and the arthritis goes away. My understanding is that the serionegative artgritis is usually milder so if you flare you would probably be ok and at least you would know for sure that you need the methotrexate. I am not claiming to be right or really know lots but that is what I’d do.

[Gilliancheche]

I am sero negative, took a long time to get diagnosis. Just had odd finger swelling which would go down. Sadly things did start to get worse and it took an ultrasound to get diagnosed. Symptoms do come and go . I understand your reluctance to start methotrexate. I was very scared. Take some time to get used to the diagnosis. Talk to the nurse and make your decision when you are ready. It helped that I had an elderly aunt and could see the damage she had incurred over the years to make my choice. Good luck xx

[Ascidian]

I would be in favour of taking the mtx now.

Although I hadn't felt 100% for several years and had experienced what i now realise were a few early symptoms, I hadn't had an obvious flare and it didn't register that I might have a form of arthritis until 2019. Then I had a definite flare, mainly affecting my right hand, initially. My GP was convinced it was osteoarthritis as my bloods were normal, but I pushed for an X-ray, which showed clear evidence that a specific form of joint damage had already occurred. So I was diagnosed with psoriatic arthritis (and like 50-60% of sufferers, I am seronegative). Given how quickly the gp had arranged my x-ray, I suspect that the damage must have started long before i was aware of having a flare.

I appreciate smilelines' point about reactive arthritis, and would completely understand if you decide to wait and see if you have another flare. By the time I actually saw my rheumatologist for the first time, my flare had ended but I had several more flares over the next couple of years, affecting more joints. Now, I have had over a year with no real flares, but it took a couple of years to find the right meds and for them to really work fully. I feel so much better than I did, but several of my joints have permanent damage. The sooner you get on the meds, the better chance you have of avoiding the permanent damage. Like I said, I am seronegative. I do think that my condition is relatively mild and my pain is usually not severe. And yet, the damage is there...

[oldtimer2]

That's quite a dilemma and I wouldn't know what to do either. My inclination when there isn't a clear cut answer is to wait and see (like you). Although I can follow the argument for preventive and early treatment, I would be reluctant to start methotrexate too!

[Aliceeliza]

I was diagnosed sero negative 3 years ago and started mtx. I have intermittent pain in diffetent joints but mainly my right wrist.. I would dearly love to cut down or preferably stop the mtx but have been advised to carry on. I loathe the side effects of nausea, heartburn and indigestion I suffer with most weeks ( but not every week) and will ask each visit if I can reduce or change the drug.Sorry that is no real help to you but I do sympathise with your dilemma and I have had reactive arthritis in my youth. Best wishes

[smilelines in reply to Aliceeliza]

I was on methotrexate 🤢 and switched to leflunimide. 10 mg in the morning and 10 mg at night. The leflunimide was so much better for me., I just feel so angry when I read about people suffering on the methotrexate.

[smilelines]

I just came by to see if you had an update. Wondering whether you have started on the methotrexate and how you are.

[Joannahopkins in reply to smilelines]

aw this is so kind. Everyone’s messages have been really helpful! I’m waking up with swollen and stiff fingers every morning now which “backs up” the diagnosis. I’m definitely leaning more towards starting the methotrexate now as I think deep down I know I need to but building up the courage to start it is another thing…

[smilelines in reply to Joannahopkins]

if you are swollen and sore it is best to just start for sure. You can start and see how it goes. The thing that happened for me was the medicine made me feel so much better that it became a friend rather than a scary thing. Methotrexate wasn’t good for me but my friend has been on it for 20 years. Leflunimide was the one I ended up on. I waited awhile before I started my medicine, too. It was a lot and I cried and was sad to need to take these drugs. I am accustomed to it now. Hope the methotrexate works well for you. ❤️

[Joannahopkins in reply to smilelines]

Thanks smilelines 🧡 I’ll keep you posted!