I was searching around for an official definition of RA and came across the word 'progressive' a few times. This was on reputable websites, too. It didn't state that RA *is* progression, just that it *can* be.

I'm not sure how I feel about this word, it's quite sinister sounding. At a push, I suppose I would say my RA is progressive, although it's not a description I would choose to use.

I'd be interested in other people's thoughts.

16 Replies

  • Unfortunately I have to agree with the description. My disease has certainly progressed over the past few years. Fingers crossed that a cure can be found for us all one day. x

  • I'm sorry you're in a similar, crummy boat. I am only 26, so hopeful that I will see a cure in my lifetime. I am anxious about the damage that has been left behind though.

  • crashdoll... You are young, I was diagnosed at 39 years old.. I am 40 now.. but My Doctor seems to think with the level of damage and "progression" of my disease that I have been suffering from it for at least 5 years!! I am HAPPY to meet younger suffers, as well as those my age, to get different perspectives! My father suffers from RA as well and he is in his 60's... Hang in there and KEEP HOPE and Faith and we CAN ALL COPE TOGETHER!! :)

  • Progression is the word I would choose for RA Less than 2 years ago I had the odd flare up now It's 24/7 constant flare ups and the agonizing pain to go with it. mattcass

  • I'm sorry, it is so, so, so tough. Have you tried any pain management? I've always believed that I know enough to manage my pain but I'm thinking of asking to be referred to a pain clinic.

  • mattcass... I am suffering from what seems like a CONSTANT barrage of flare-ups !! its AWFUL, but we have to HANG IN THERE TOGETHER!! Thank GOD for this SITE and ALL YOU WONDERFUL, Honest like-minded People that Share and Help me COPE, You are all like a SECOND family I feel like I can TELL ANYTHING TO ! ! and Share almost anything with ! THANK YOU ALL SO MUCH ! :)

  • Hi Thomas, Thank you for the kind words you are right this is a great forum the help advice and support is second to none. Matt

  • Wow!! It is getting out there that it's not all about arthritis! My thoughts are it's all too individual, there is no "one size fits all" aspect of the disease. My journey with the meds I've been treated with must have slowed down my personal progression but I'm confident enough to say without those meds it would have progressed further than it has. Do you think that's the angle they're seeing it at? I might be talking poppycock, my head is fit to burst & this is a little woo out there for my poor brain lol! ;)

  • That's a good angle. I knew I posted my ramblings for a reason! ;) Not poppycock at all.

    Yes, without my meds, I would have more damage. So, reverse the concept of "RA can be progressive" and I can say that the meds have (mostly likely) slowed down the progression.

  • You're too kind! Exactly where I was coming from but in fewer words! I do think though there is so much even the scientists don't yet know about the disease & how it throws curveballs. This is why I'm so pro research & so anti alternative. They don't know why it is some of the DMARDs work well at damping down the symptoms but they do yet they don't work for everyone, or sometimes do for a length of time & then stop working, why? Is this progression or the disease mutating into a different form therefore no longer reacting positively to the meds? So many questions & I'm not sure how close to the answer they are but I hope one day it's as simple as a jab given in childhood.

  • Since there's no cure for it, and the best that the various meds do is slow things right down, how else can you describe it but progressive? And life is progressive too, so it kind of goes hand in hand?

    But overall I don't mind that as a description as maybe it makes it more interesting for researchers which could encourage people to work harder for a complete cure.

  • That makes sense to me. Bizarrely, despite living with RA since 2009, I've never thought of it like that. I think it's just a word aversion for me.

  • Hi crashdoll

    I'm sorry the word " progressive" has upset you a little. This disease is of course mostly progressive though.....sometimes it will progress very slowly and sometimes more quickly. If it wasnt progressive we wouldn't be needing these strong drugs/ dmards etc, we would just be told to manage any symptoms we had with painkillers etc as no further harm would occur. As others have said, there would also not be this constant search for new and better drugs, and hopefully a cure!

    Perhaps try and think that although it's progressive, the drugs you are taking are slowing this down, maybe even halting it, and if you reach anything like remission, then happy days :-) x

  • It is certainly potentially progressive, but I do know two people who have had it as a monocyclic disease. Lucky things. They were definitely diagnosed with RA, and all the blood tests verified that, but one is down to 2.5 mg methotrexate and has no symptoms at all. the other, who was pretty bad for two years and does have a bit of permanent deformity in one hand, is now completely drug free and has never felt better. So, it would seem that progression is likely, but not inevitable. And remember, that people on this forum are likely to be the more seriously affected .

  • Mine hasn't progressed beyond the point of slightly deforming all the fingers on my right hand when it was bad. I have confirmed RA and confirmed autoimmunity but where it's heading no one knows. I would even go as far as to say my RA is probably in remission. However I don't feel always especially lucky because I have a broader spread of autoimmunity than some people with much more aggressive/ erosive/ classic RA and I don't tolerate drugs well at all.

    Personally I think autoimmunity is scary whichever way it heads and I have never had good health from babyhood onwards - but nothing has progressed to the point of destruction yet. Instead mine roams unpredictably in any direction it fancies - playing havoc with my mind rather than my joints these days.

    But I'm very interested in Jo's friends who have it as a "monocyclic disease". Depending how old they are they might not be so lucky if it suddenly comes back with a vengeance of course - but if they have no other type of autoimmunity then they are lucky just now to have a non-progressive type of RA - as long as it doesn't go wandering off in new rather alarming directions as mine seems to have done!

  • With current medical knowledge about RA disease processes being pretty good, the chances of treatment controlling RA completely are actually loads higher than it ever used to be - bearing in mind you don't see too many folk who are in complete control on this message board, because they don't need to be getting support or asking questions any more. Potentially RA can be controlled so that it doesn't progress, and that should always be the treatment goal. If that isn't happening for you, then be firm in asking your rheumatologist or rheumatology nurse what you can try next. Getting the disease under good control early is also the reason that national targets for RA focus on early diagnosis and treatment. Stay positive, and don't accept not feeling good - keep on reporting back to and working with your treatment team until your treatment really does work for you.

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