I have had Rheumatoid Arthritis (RA) for almost 20 years. It has been a struggle. I was unresponsive to many treatment plans. Finally rituxin infusions eased the pain and progression. Now I am taking only meloxicame and leflunomide.
I have entered "end stage" RA. Which is why I was searching online and found this community. i am hoping to find someone with knowledge or experiencing their own end stage. I understand RA is different for everyone but until recently I was unfamiliar with the term "end stage".
I have questions and concerns, hope someone can relate.
Thank you,
Written by
alwayshome
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I too have had RA for 20 years- been through various drug failures & am now doing well on Rutiximab.
I have regarded a lot of the stages of RA as “the bitter end”......but have never heard anyone describe their disease as “end stage”!
Sadly it just seems to go on & on!
I only came across this term last night when doing some ra researching. I never knew there were stages to the disease until now and have been diagnosed nearly 10yrs. I must admit I found it worrying but it helps to be informed. I hope you can find some answers x
I have had RA for 17yrs and there is still life it the blooming disease yet and I have never heard of the term end stage. I always thought that referred to cancer not RA.xx
Are you in America? I think it’s a description more used in the States than the UK for well established disease that has damaged joints and become quiescent as nothing more to damage.
But how miserable for you to not have responded well to treatment, and have ended up with destroyed joints. I went to a lecture on RA a couple of weeks ago given by rheumatologists and they said that they rarely see extensive damage anymore. You’ve been unlucky. Sorry.
I have read some literature which describes RD in 4 stages, something along:
Early, moderate, severe and end stage RD.
End stage being where the joint synovium is so damaged it is in effect 'burnt out', there is no more damage to be done with bone erosion pervasive. Pain can still be an issue.
However with modern surgery many of the joints can be replaced, so in this respect there is now no end stage !
I suspect the term is a hang over from pre modern drug therapy ?
Well that sounds awful. What happens after end stage stage I ask? Did your rheumy tell you this? I’ve never heard of end stage RA. I have had RA for nearly 30 years and have never been told this even though I’ve felt like it’s the end sometimes 😔
Hiya alwayshome, welcome. I came across this term here a while ago, had never heard it before but recall it was someone in the US who had been told this was what she had entered. I remember feeling a tad concerned, end stage sounds terminal, the end of the road, not a nice feeling anyway. I'm sorry but I don't remember who it was but have a feeling we didn’t hear from her again but that happens sometimes with new members so I didn’t concern myself as I would a regular member who we don't hear from for a while.
Anyway, I'm sorry you find yourself lumped with this term, it must be a concern. Have you been with your Rheumy a good while, are you confident in his findings, that there really is no option for you other than meloxicam & LEF? It seems a backward treatment considering you’ve had biologics. You've discussed the newer JAK inhibitors (or other newer biologics) & they've not been deemed suitable for you? Sorry for the questions but in someone given that RD label I'd be hoping to be prescribed something other than a DMARD & NSAID.
Welcome on board! Sorry to hear your health with RA described in such an unhelpful, worrying way.
Perhaps it just means you need joint replacement/s, as others have commented. RA drugs slow down the progress of the disease but don’t stop long term damage. I hope you might have an opportunity to discuss this with your health professionals at Rheumatology, or call the NRAS free helpline: nras.org.uk/
You’re welcome. Pleased you found them informative though ordinarily of course we wouldn’t know about these 'stages' in our day to day RD life here in the UK. Whether they're actually helpful, other than stage one for the newly diagnosed possibly, I'm not sure.
Joint Deformities so bad that people need to be in wheelchairs and have care givers because they cannot even hold a spoon or fork to feed themselves. These are usually the people that did not get some form of RA treatment such as a DMARD or biological to stop or slow down bone erosion and damage.
However there is some hope for these folks as well. Surgery to replace deformed joints.
Note: RA also can affect many other organs in the body and can reduce life expectancy by 10-15 year.
RA is no joke! A very bad disease that needs MORE research, procedures & medications to CURE, not just slow the progression and treat.
A sweeping statement such as your "Note" should be expanded on not just left if it's not to cause consternation. I'm aware of them but others may not be so do please explain the extensive variables.
I don’t advise that on such a controversial subject, for one it's important the reader is aware they need to only heed the latest advice/findings, not those written in the early 2000's & before which is generally where these more alarming figures are found. I think you'll find the latest info doesn’t comply with yours. It's true RD has the potential to affect our vital organs, although many newly diagnosed aren't always aware of this, they can think we're taking meds only to halt joint destruction. This is why it's so important to be fully informed & bring it under control & have it remain that way, why it's so important keep taking our meds.
Lots of room to expand by the way, text space isn’t limited on these pages. Or, if text is extensive you could always provide links so we can decide if we wish to view the info. It's helpful too if lifting text (copy & pasting) if we provide the link to the original wherever possible, that way if we wish to read the whole text we can. Thanks.
From the moment I was diagnosed I googled and read everything I could find on RA. It’s been almost 20 years. Now I am back trying to get information like you just said regarding end stage or stage 4.
I don’t seem to be satisfied with the dribble of info I am finding. If you have a reference to a website or book I would really like that.
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