Just wanted to say hello. I’m a 36 yo, single dad to a 12yo with complex needs, finally diagnosed with inflammatory arthritis in Jan of this year after 10 years of back and forth with Increasingly widespread joint pain and swelling. I was always completely seronegative, so told from day one it couldn’t be any form of arthritis, but having moved countries within the UK last summer, I went to my new GP with my worst flare ever in October. Bloods were all perfect, even crp and esr, but one of my fingers was swollen like a sausage, so they sent me for a scan that revealed fairly severe synovitis, and within a month I’d been seen by a rheumy and provisionally diagnosed with psoriatic arthritis: I’d had a patch of psoriasis on my calf for 18 months as a very young teen, and first began having problems with my back around the age of 16. An MRI since then shows that I do have spinal involvement, along with frequent symptoms in my hands, wrists, one me elbow, one hip, both knees, and my toes, some of which show changes on x-ray. The very first major flare I had was actually a solitary big toe that lasted nearly 9 months and the docs were initially convinced had to be gout. Started on mtx straight away, but they’d started me on pred over Christmas whilst waiting to be seen and I ended up stuck on it for almost 4 months - I couldn’t successfully stop it at all until they added leflunomide in at the start of April.
Some days are better than others, and there’s no rhyme or reason to that, but I’m in a lot better place than I was a couple of months ago. One question I do have, though, is: what does well managed arthritis actually look like? Should I expect to be mostly pain free the majority of the time outside of flares? I’m on a decent dose of mtx (20mg) but a very low dose of leflunomide (10mg), and given that the lef is clearly helping where the mtx on its own was almost useless, I’m wondering if some of the ‘bad’ days I’m having suggest I could do with a dose increase, or if it’s just par for the course...🤔
Well, what a journey. I too had another health condition that went undiagnosed for year. When I finally saw a consultant I was rushed in for surgery (they thought I had cancer, I was 30 - it wasn't but it was life changing) so I can empathise a little.
I have only been diagnosed with RA for 8 months, like you am seronegative. I was told that I had a very good chance of remission, meaning perhaps only 1 or 2 joints are affected ( I think) but I'm no where near there yet but it's an aim. You are young and with a fair wind behind you should strive to seek remission. I suggest that you give a drug /dose a good chance but if it doesn't work- ask for a review sooner rather than later. There are many drug options out there, but there is still a lot of quess work to find the one that will work best for you. So the main advice I can give is don't accept'par for the course'- yes, there is a new reality to adapt to but I'm aiming to get it as close as possible to the best it can be. Be a lovely nusiance (if you know what I mean!) You will find lots of lovely people on here who will be able to give advice, guidance and support. Best wishes.
Welcome to the club that no one really wants to join... although hopefully you'll find that the support and advice in this forum is as useful and reassuring as I, and many others, have.
With regard to your question about what does well-managed arthritis look like, I actually found myself asking a very similar question just recently and got some very useful answers here...
... the summary of which seems to be that whilst you do need to be prepared to give many of the drugs some weeks (and in some cases months) to have effect, there is absolutely no reason not to keep pushing for "better" and though it can take some time to find the right combination, and of course, it varies from person to person, many people do eventually reach a place where they are relatively, if not completely, symptom-free for much of the time.
Having only started this adventure just after Christmas, it's certainly not a place I've reached myself as yet, but things are already considerably more manageable than they were and I fully intend to keep exploring the options if/until I get to a point that I feel I can live with long term.
Good luck and hopefully we'll both get there eventually...
Hi Charlie....Tough luck being diagnosed .....But you seem to have hit on a good thoughtful Rheumatologist who is looking after you well. Listen to him, talk to him & ask questions when you need to. Getting on the right drug regime for you can take time...but don’t assume because a drug doesn’t work straight away that it’s not for you.....give it time.
It’s early days yet....give the Leflunomide a chance......there is every chance that your “bad days” will settle down. Good days & bad days are par for the course at the beginning, but once you are well controlled you should have many more pain free days than Ouch days. You will probably still have the odd flare, but as you get settled on the right drugs they will come much less often .
When you read posts here, do try to remember that more people post when they are having a flare & are in a bad place......don’t think what is happening to them will happen to you......be optimistic & believe that you will be in the majority group, who are getting on leading good lives.
RA does not need to be all doom & gloom.......20+ years on I can still have a really good life despite the present situation......we are not invalids...... unlucky yes , but there is definitely a good life to be had....so go for it.
Hi Charlie. Welcome to the site. As others have said, it is early days yet. We are all so complex and it isn't a case of one size fits all so can take a while to find what suits you. Once your meds are established and doing their job you can look forward to better times ahead. All the best to you and your daughter. x
Hi Charlie, I was diagnosed 18 months ago and it took a good 8-10 months to get it under control with gradually increased dosage and additional drugs. Nowadays I’m almost pain free, just minor if I overdo things. I do get tired quicker and have learnt to do a bit, have a breather, do a bit more and so on. It is limiting (for me), but compared to how I was 18 months ago I feel great. It will take time but I’m sure that you will get there. Best wishes.
Hi Charlie, I am very glad for you that you have been diagnosed and are on some treatment that appears to help. On this forum we are not allowed to give medical advice, so I can't help you there. Each one of us probably reacts differently to our meds, but what we have available these days is brilliant. Ups and downs are to be expected during several months of initial treatment, I certainly had them, but with the right combination and your determination to "live with RA" and not "suffer from RA" you'll hopefully get back to leading a good active life. I wish you all the best.
The trouble with RA as you say there is no rhyme or reason to it. One mans flare is another mans hiccup. You would need to speak to your rheumy. Do you have a phone you can ring?
You have found the best site for advice, but at the end of the day it is down to your rheumy, but we can help with ideas for questions you can ask when you get through. xx
Hi Charlie sorry you have had to join us but honestly this is a great place for information, understanding or just unload.
Like you I was misdiagnosed was told s-negative bloods clear so no not RA. Kept being told I was depressed I argued this but no one listened.Fast forward 10years (showed symptoms 5years before that) I was diagnosed 4 years ago stated methotrexate and did pretty well with a few flares. February 19 things changed dramatically. I couldn’t walk or use my hands other joints chosen by RA at random fatigue so bad I didn’t leave my house for weeks at a time. Lost my dream job and am only working 1 1/2 hours a day. Tried and failed various drugs now on a Biologic and a low dose methotrexate and I’m starting to see hope. Walking still painful as Achilles playing up but I’m in the land of the living mentally and now able to communicate with my family and each day I’m doing more( lockdown has helped) I walk the dog most days (once a day) over a mile a day I have a rowing machine and each week I increase my workout. It’s slow but I am improving bit by bit and I’m really hopeful for the future.
Patience is a must with this disease. Don’t leave things I did I thought I could fight it and just ride a flare. I learnt my lesson there. Be proactive ask questions do not accept pain stiffness or swelling it’s a sign your disease is active and doing damage. If you think your meds are not working call your clinic. Keep a diary note which joints hurt or swollen how fatigue effects you. Thus will help both you and your consultant. Hang on in there you will get there eventually.
Welcome, and although it has been a tough ride to get diagnosed at last, there is hope for more relief ahead. The usual period for drugs to be fully effective, at the correct dose, is at least 12 weeks. Early days for you yet, so I hope 🤞 it goes well.
I was diagnosed with seronegative RA in 1987, I was seronegative for 13 years then suddenly changed to seropositive. I also take MTX with Leflunomide and also Predisalone and occasional infusions of Rituximab. Also have Osteoarthritis, Osteoporosis and Vasculitis. Wishing you well for the future.
Hi Charlie I was diagnosed 4 years ago. Agree with everything that’s been said- but just to say , I’ve had a bit of a treatment journey ( been tried on quite a few) but I’ve had some long periods of time when I’ve felt totally normal . Then a flare can appear and when you are in it you can’t imagine feeling good again. In other words be positive and keep pushing for the best drug management . When I’m gd I work full time, can do 5 mile walks etc. Good luck with it all!!!
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