Seronegative, one joint only.. will it progress

[Robejo]

Hi,

I have had a swollen knee for about 5 years now, apart from most of 2022 when I was prescribed 15mg methotrexate which reduced the swelling significantly. I gradually tapered off the MTX during 2023 and the swelling stayed away for ~9mths until it randomly reappeared over the xmas period.

So I'm now on the verge of reconnecting with my RA doctor and getting myself back on 15mg MTX. I'm reluctant because it made me feel rough for 48hrs every week, hence why we experimented with tapering.

Even though I had arthroscopy and scans etc 3-4 years ago to rule out any kind of injury that might have caused the swelling, I still keep trying to convince myself that this is not RA!

After all, it is only in one joint, I'm sero-negative, and it has been going on for years - does anyone else have similar experience of only one joint being affected? I feel like a strange case.

I obviously count my blessings in only having one joint affected, especially when reading through some of the experiences people have described on this forum, and I admire everyone's courage.

[Cheesechurch]

I started off with only my left fingers affected then it went to my other hand. My diagnosed was delayed because at first it was only one hand.I then stayed stable until after lockdown because my medical were reduced and now have it in both feet.

So if you go back to 15 mg of the methatrexate it will stop it progressing.

May you stay with only one joint effected.

[1330-30 in reply to Cheesechurch]

I had zero negative RA, with only the right hand knuckles badly affected 22 years ago diagnosed by a full body scan which indicated that many joints were, which I had related to a very active lifestyle. Methotrexate has saved my life. I am still zero negative RA. Hope this helps.

[Robejo in reply to Cheesechurch]

thank you for sharing your story. BAck on the MTX track I think!

[lilyak]

What you have does not meet the criteria for RA, so its not RA. But clearly your doctors have ascertained its a form of inflammatory arthritis, and its very important that you get proper treatment. RA is a type of inflammatory arthritis, and you probably fall to the side of the usual diagnostic categories.

If I were you, I would reconnect with a rheumatologist, the same one, or maybe a new one. There are other treatments that may keep your disease under control, without feeling rough for 48 hours every week. Depends how much you told your previous rheum about the side effects, its worth seeing them and telling them. e.g are you on tablets? Injections are often much better side effect wise. Have you tried other medications? There are many other options, but only if your under the care of a rheum. I would urge you to make an appointment. At the very least, to get this flare under control. It might only mean a few months of mtx (or something else) and then a few years of remision again. You never know.

[Robejo in reply to lilyak]

thanks Lilyak, I think I'm guilty of using 'RA' as an umbrella term whereas I should really have been referring to it as Inflammatory Arthritis. My Rheum, upon initial examination, stated that it was a mono-articular inflammatory arthritis (also having seen results of a biopsy that was taken during my arthroscopy before I was told to go to rheumatology).

When I went to the GP last week to get a referral for NHS rheumatology (I was fortunate enough to be employment-funded private before), he pulled up my notes and it said 'psoriatic arthritis' of the knee) I was surprised to see that term appearing, but I do recall the rheumatologist's eyebrows raising when I mentioned that my father had psoriasis late in life. However, to my knowledge, I've never had it. I guess I needed to be pigeon holed and he chose that one as most likely! I have nothing but praise for the rheum I saw last couple of years, so fingers crossed I get him again on the NHS. Maybe I'll ask about the injections (as long as I can do it myself). thanks so much!

[wilbertjellyfish]

Have you been retested for rheumatoid factors since your initial test. I was told in the beginning that a lot of people convert within the first year or two.Still at least you got off meds for a short period, sorry to hear it has flared again. Hopefully it won't be long before you get the Mtx and maybe this time it won't make you feel so crap. It might be worth seeing if they will give you the injection,

[Robejo in reply to wilbertjellyfish]

Hi, I was only tested for the rheumatoid factors once after my initial contact with the rheum. I'll see what he says this time. Yes, it was very nice to be off the mtx, but I think I now finally need to admit to myself that I have a chronic condition which is going to continue to rear its ugly head! injection might be the way forward.

[wilbertjellyfish in reply to Robejo]

The chronic disease thing is a hard pill to swallow. Injection mtx might have fewer side effects and if that works and is all you need happy days. You can still have a normal life (apparently, six years in and I'm not on any stable meds that work..bar steroids). Main thing is keep moving.

[bpeal1]

When you reconnect with your Rheumatologist you could ask if a synovectomy is an option. If it is just one joint affected if they removed the synovial lining from that joint then it can’t get inflamed. I don’t know if that would be an option or not but definitely worth a discussion.

[Robejo in reply to bpeal1]

So, when I had an arthroscopy before being passed to rheumatology, the surgeon was expecting to find a torn meniscus or some other structural damage which hadn't shown up on the MRI, and which would explain the lack of flexibility and the swelling. At pre-op he said to me, 'whatever I find, I'll deal with it there and then'. This justifiably filled me with a sense of dread When I came round, he informed me that there was no structural damage whatsoever, but he had performed a 'partial synovectomy' to get rid of all the excess tissue (can't remember the scientific term for it) and he took a biopsy - which confirmed 'rheumatoid like inflammatory cell infiltration,' or something like that. My Rheum was unimpressed that they had deduced that from the biopsy alone. So, basically, I've already had one, but I guess the part that wasn't removed is the bit which is now swelling (mainly top of knee cap).

[cathie]

rheumatologists seem to be confused about the difference between osteo and rheumatoid arthritis but problems in one joint suggests the former but use of mtx the latter. I hope you can get clarity and pain relief

[Robejo in reply to cathie]

thank you - seems like a very tough area for diagnosis and prognosis! At least medication has come on leaps and bounds over last few decades.

[OldTed60 in reply to Robejo]

There are many types of inflammatory arthritis . I was diagnosed with seronegative RA initially 13 years ago because they only tested rheumatoid factor, inflammation, anti-CCP etc and my pain was bilateral.

However, 5 years on there was no erosive damage from either RA or OA so I was tested for other rarer rheumatic autoimmune diseases. It turns out that I have seropositive systemic sclerosis/ scleroderma, seronegative Sjögren’s (biopsy diagnosed and Ehlers Danlos Syndrome. Despite +ANA and a scleroderma antibody I had to see an eminent professor of experimental rheumatology- specifically scleroderma - last year to get all fully diagnosed.

My rheumatologist is a lupus expert who only sees Lupus, Sjögren’s and RA patients but she’s explained that Lupus can often present with unilateral synovitis without the erosive synovial damage of RA. You’d likely have other more unpleasant systemic symptoms and signs with Lupus by now though, same with all the rarer rheumatic autoimmunes. If MTX helped the pain and swelling then it’s probably some other form of inflammatory arthritis rather than OA.

[Robejo in reply to OldTed60]

Thanks for sharing your story, you've certainly been on quite a journey, and I hope things are currently under control for you. I never knew that synovitis doesn't always lead to erosive damage, I guess it depends whether gremlins have infiltrated the fluid?

[OldTed60 in reply to Robejo]

I guess I’ve been around these various diseases for a fair old while now so I’ve picked up a lot of info along the way. At a quick Google glance I took the first of many reams of links on synovitis in SLE/ Lupus and other CTDs for you. Yes definitely non erosive synovitis is more a Lupus thing than any other of this connective tissue disease family. You’d also likely have skin and some other systemic symptoms - but not necessarily - if it’s still evolving or UCTD for example: hss.edu/conditions_top-ten-....

sciencedirect.com/topics/so...

[BillyJayDuncs]

This sounds similar to me Robejo. I started with inflammation in just my left knee totally out of the blue. It took about 7 years, an arthroscopy, an amazing physio (who suspected something else was the underlying issue and encouraged me to push for a referral), a battle with my GP for the referral to Rheumatology and then finally seeing a Rheumatologist and starting meds, which helped massivelyMy right knee has also been affected since then, along with my ankles and toes - always on the same side as whichever knee flares up and but it has only ever one side at a time too.

I have been under Rheumatology for about 10 years now and always been seronegative. They swapped my diagnosis to psoriatic arthritis instead of inflammatory a couple of months back following a bad flare that steroid injections, 20mg Methotrexate and 6 tablets of sulfasalazine weren't touching. On amgevita now and 🤞🤞🤞it seems to be helping. I am hoping I can ditch/reduce the Methotrexate at some point - I really hate the side effects from it, but have kept going because it's worked!

[Robejo in reply to BillyJayDuncs]

Thank you so much for posting this BillyJayDuncs. Before diagnosis with inflammatory arthritis, the various medical folk I saw had a whole variety of theories for the lack of flexion in my knee. After my arthroscopy, the surgeon instructed the physio to focus 100% on straightening my knee through brute force stretches. I still squirm when I look back. I'll never forget the change in the physio's demeanour when he read the biopsy result suggesting ' rheumatoid features' and recommending 'sero-correlation' or some such. I think he suddenly saw my low pain threshold in a different light!Anyhow, thanks again for sharing your story, it feels very important to have finally found someone who has had similar characteristics, and I'm going to drop any further delusional thoughts RE incorrect diagnosis and permanent remission - back to the rheum with tail between my legs (he was VERY reluctant to taper me off mtx in first place!)

All the very best with your current struggle, and I really hope the amgevita does its stuff for you

[BillyJayDuncs]

Thanks Robejo and you too. Are you on the injections or tablets for the methotrexate? I'd definitely recommend swapping to the injections if it's tablets. I still get side effects, but can actually function with them whereas the tablets were a different story!Totally get what you say about the denial - I have been there several times over the years and asked to reduce the meds, only to flare up again and have to have my knee aspirated and a steroid jab.

[Robejo]

He started me on 15mg worth of tablets with a view to increasing to 20/25 if sufficiently well tolerated. Turned out the 15mg did an ok job of reducing swelling. Not perfect, and he wanted to up the dose, but 15mg was unpleasant enough, so we compromised, after all I5 was allowing me to excercise ok and stay fit etc. When I was adamant on tapering, he did suggest injections.. so I think I'll pick it up there, thanks for pointer. First things first, aspiration + steroid. The aspiration is such a relief - bit like finally being able to hear after an ear syringe / breathe after a cold - or maybe that just me!

[BillyJayDuncs in reply to Robejo]

Totally agree with the aspiration being a relief, as horrible as it also is!

[Robejo in reply to BillyJayDuncs]

Yes, I do remember looking at the syringe after the first extraction and feeling a bit bemused - he was very quick to tell me it was of a clinically sound appearance so I assume my bemusement came across as panic! I think I was still half expecting to be diagnosed with Lyme's arthritis at the time (I live in tick-ville) and thought the joint fluid might be somehow tainted accordingly.

[Kracker55]

I would hope you would be put on a biologic now as they are one to two injections a month and work way better than MTX.

[KittyJ in reply to Kracker55]

Or four 😊

[Robejo in reply to Kracker55]

I suspect biologics are a little bit more expensive than mtx in the uk - so there might be some NHS resistance, especially as mtx worked ok for me in terms of reducing swelling at least. Maybe I'm wrong!

[KittyJ in reply to Robejo]

They would have to meet the criteria and one swollen joint wouldn’t do that I should think especially as mtx had worked before for them and that’s all they’ve tried.

[BillyJayDuncs in reply to Robejo]

It's only now I have had a flare that hasn't responded to the methotrexate and sulfasalzine, steroids and multiple joints have swollen that the consultant has been able to get a biologic agreed to for me on the NHS. I'm not sure how much of a postcode lottery it is though. 🤞you have some progress soon

[Ailsa-NRAS Partner NRAS]

My journey with IA started in one knee only but progressed ultimately to symetrical disease. Suggest as others have that you see your rheumatologist rapidly and get onto treatment asap. I'm seronegative, Anti-CCP negative and I have the Ank Spond gene HLAB27 as my father had AS. There are different types of RA and IA but rapid treatment will get things hopefully under control again. Ask to try MTX injections as this is likely to improve symptoms of nausea. Good luck - Ailsa

[Robejo]

Thanks so much Alisa - really appreciate you sharing your story, together with the other kind people on this thread, you've convinced me to get back on a treatment path. Now just got to force myself to dial the phone number and not put it off any longer!