No RA

[chockers]

I was diagnosed with it . Lots years ago took Mtx now experts tell me I never ever had it

[Pythagorus]

How come?

[denvajade]

I too wonder if I ever had ra.was on methotrexate 8 years not been on it for about 8 years. Something is obviously wrong but don’t think it was ra

[Gaz227]

So what are they saying was wrong with you to justify 8 years on MTX , and what dose where you on ?

[Rhiannon1970]

Ooh how interesting

[sylvi]

WHat do they say is wrong with you then darling.? xxxxxx

[Mmrr]

Do you have a new diagnosis?

[Sheila_G]

I am wondering who told you that you had it in the first place. Strange!!

[Constance13]

How can anyone deny RA? What is all this dreadful pain then?

[Hidden]

Looking at your profile and your last post, it seems you’ve been told you have other autoimmune conditions instead? As there are overlapping symptoms, my understanding is that it can be difficult to correctly diagnose some of these conditions, but mtx is also an appropriate drug to try for patients with scleroderma.

[Durrell]

Hi I was diagnosed over 12 yrs ago, an old retired dr who did a bit of stepping in when needed, told me it’s not unheard of that it can burn itself out?? I have tried to research this and found nothing to back this up. However recently I have a new Rheumy & he is under that very impression that could be the case with me. I did ask the question re the old drs conversation & he said yes it can. I do eat carefully re inflammation diet say 80/20 so not overly strict , but I don’t do sugar & keep to very low carb & I’m convinced for me this has helped..

[tina-shelley in reply to Durrell]

Durrell, I’ve also heard this. My question therefore is, if it can go into remission how do the clinicians know because if we’re always on the same levels of medication, which reduce the inflammation, control the progression etc how will they actually ever know if it’s gone into remission. I also had PMR and I mention this because you know if the condition has gone into remission as throughout the ‘live’ process as I call it you reduce your steriods until you no longer require them, them you know the condition has gone into remission. Tina.

[Durrell in reply to tina-shelley]

Yes I wish I could answer that question, I will ask at my next Rheumy apt. It’s very confusing like you say if your controlled on meds & bloods show this, how do they get to that decision?? Very bewildering 🤫. I will follow it up & report back when & if I know more..

[tina-shelley in reply to Durrell]

Thank you so much Durrell.

[Kags1068 in reply to Durrell]

Hi DurrellI developed RA(JIA) at 13 (diagnosed just after turning 14). For a while I used to get told by some docs that it might burn itself out - especially if it was aggressive (it was), and you're young. Unfortunately, nearly 40 years later I'm still waiting - I think that ship has sailed now!! I just remember noticing that as the months/years went on, nobody said that anymore. It all became about trying to control it and limit damage, which hasn't been very successful. I have heard of people whose disease has supposedly "burnt out" but I've never actually met anyone who fits that bill. I hope you are one of those mythical people, and that things stay quiet for you.

I've never been able to do this, but I believe when some are believed to be in remission, with the supervision of their consultants, they are allowed to slowly start reducing some medications and see what happens.

I don't know if this could be appropriate for you if the idea appeals? Best wishes with whatever you decide in the future 😊X

[Durrell in reply to Kags1068]

Yes it is interesting isn’t it. I feel for you as that’s been a long journey for you to live with the disease. Mine started in my mid 40tys but very aggressive like yours. I’m not sure if it’s truly gone?? But very happy to at least try & withdraw slowly off drugs, as I really mentally struggle to take them with all their side affects etc.. Golly the thought of walking away from the disease would be fab, though early days. Time will tell …,

[Kags1068 in reply to Durrell]

Thanks for your kind reply. I really hope you do get to literally walk away from the disease and reduce those meds. Thankfully, I'm generally OK with taking them as I suppose it's a way of life for me now - can't really remember what it's like not to take them! Good job, eh?😉

[Durrell in reply to Kags1068]

Your welcome 👍

[Zara0123 in reply to Durrell]

You are so lucky. I hope my RA burns itself out one day. That would truly be a blessing for me. I hope you remain in remission for good. Did you start your treatment as soon as you were diagnosed. Out of fear of RA meds I delayed my treatment then became so ill I had to start taking Mtx. I've just been on Mtx for two years now. Still lots of sickness and fatigue the day after taking Mtx. It's got worse recently so I need to talk to my rhemy. Wishing you good health and I hope you can come off all your meds soon. At least it gives some of us hope that we might be lucky enough to get better in the future.

[Vonnie10]

If only mine would burn out I wished it was true fir some of us. Never ending slog

[AudreyJ]

I was told a few ago that I could have had acute inflammatory arthritis (I think that's what the consultant said) rather than RA and that maybe I could stop the MTX (after 8 years or so) it's a bit bewildering.