Burnt out RA and photos of damage | Arthritis Information

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This is what I have found thus far......there is very little info.

 Please take the time to see why we take the meds we do so we do not have to go through what people did years ago.
 

by Nathan Wei, MD


Rheumatoid arthritis (RA) has a variable course. This article discusses "burnt-out" RA.

In the days prior to the development of effective therapies, patients with rheumatoid arthritis would suffer from severe active disease for a considerable amount of time.

Quite a few of these patients would then, after years of having RA, show no measurable disease activity in their joints. No swollen joints or other signs of inflammation would be present.

What these patients would have is severe crippling deformity in multiple joints. Wheelchair confinement was not unusual.

Blood tests would also show little disease activity with minimal abnormalities of the erythrocyte sedimentation rate (ESR) or C-reactive protein (CRP).

Why this happened is still unknown. While "burnt out" RA still, unfortunately, occurs, we rarely see this type of disease anymore. The more common scenario today is for patients to have treatment initiated with slowing down or actual stopping of disease activity (remission). When remittive drugs are removed, patients will flare and require reinstitution of their medications.

Treatment for the rare patients with "burnt out" disease is still indicated. Supportive measures such as physical and occupational therapy, analgesics to help with pain, and possibly surgery to correct deformity is often beneficial.

Aggressive disease-modifying drug therapy is probably not a good option though since the risks may outweigh the benefits.


About the Author
Nathan Wei, MD, FACP, FACR is a rheumatologist and Director of the Arthritis and Osteoporosis Center of Maryland (http://www.aocm.org). He is a Clinical Assistant Professor of Medicine at the University of Maryland School of Medicine and consultant to the National Institutes of Health. For more info: {a href=" http://www.arthritis-treatment-and-relief.com/arthritis-treatment.html"}Arthritis Treatment


 

jodejjr2008-05-23 18:30:05and this....http://www.abc.net.au/health/library/stories/2006/04/06/1831776.htm
 

As the condition progresses, the muscles around the joint waste away, the cartilage in the joint and the bone underneath erode away, and eventually the whole joint is filled with fibrous scar tissue until it freezes completely. Sometimes other organs in the body – the skin, eyes, lungs, heart, blood and kidneys – are also damaged.

Rheumatoid arthritis affects about one per cent of the population – usually younger women, aged 25 or older, with the peak age of onset at 35-45 years. It's three times more common in women than men. Children and elderly people can develop it, but less commonly. (For more on arthritis in children, see the section on juvenile idiopathic arthritis below.)

Like other autoimmune diseases, it tends to run in families – there's a genetic predisposition to it. We now know that people with rheumatoid arthritis are more likely to have a gene called HLA-DR4, located on chromosome 6. This gene is also associated with Type 1 diabetes.

Rheumatoid arthritis strikes people differently. In some people it can start suddenly, but is more likely to start gradually (the symptoms are often put down to ageing at first). It typically (but not always) starts in the fingers. It can suddenly improve – go into remission, never to reappear. (This happens in about 20 per cent of cases.) In others, it improves, only to flare up again, improve, flare up again, and so on.

Mostly though, it is gradually progressive, getting worse over the years until finally after many years, it sometimes reaches a stage when it becomes 'burnt out – the active inflammation, the pain and the tenderness in the joints disappear, leaving the joints permanently deformed from years of scarring and joint damage. This can give rise to typical deformities, such as the 'Boutonniere' (button hole) and 'Swan-neck' deformities in the hand

http://www.hopkins-arthritis.org/arthritis-info/rheumatoid-arthritis/rheum_clin_pres.html
 
 
 
Those are a bit smaller synovial cysts than I had. They are unbelievably painful!
This is what we strive to not have!!!!!!!!!
 
the one advantage, for lack of a better word,  that we have over those who went before us is the advances made in surgery and rehabs.    As my rheumatologist once said where medicine fails surgery fixes.   Joint replacements, hand surgeries, fusions all go a tremendous way towards repairing some of that end stage damage.  Proper use of physical, occupational and hand therapies can also prevent much of the damage caused by truly out of control disease.  No one in this day and age should have to live with damage like thatI agree fully. THe one with the bumps on hand was what I had only more severe and on both hands. I thank modern science and a very determined Rheumatologist for the fact that I will not have to suffer like the ones before us.
 
We are all very fortunate due to education of our physicians, medicaiton and technology to find this stuff. I am also thankful for the surgeries and the physical therapies that allow me each day to type, to think, and  to function in my everyday life.
 
IT still amazes me that this disease can do so much damage. I feel extremely fortunate.
Snowowl, I did not intend to bring up awful memories for you or any for anyone else.others. I was shocked as well.
 
 
Jode I know it is hard to look at the pictures but I also believe that everyone needs to see WHY we push for agressive treatment.  I don't think that many newcomers truly understand what we mean when we talk about damage.  We can talk til we're blue in the face but a picture drives the point home^ I don't understand the term "burnt-out" RA. Do they mean that the RA just disappears and burns itself out, meaning that it stops, or do they mean that the disease "burns-out" the joints, leaving them damaged and useless?

I was told by my Rheumy that RA never goes away and once you develop the disease, it remains with you for life. Is this study saying that that doesn't happen, that you can be "cured" after a while?

I am confuzzled.
_popupControl(); hi paperdoll i have searched the web for burnt out ra and end stage ra
little is to be found...

i understand it like this... some people whith ra have very severe
or drug resistant .disease.. a mass destruction of the joints occurs..
they are not sure why but the ra burns out.. maybe as it has
ruined all the joints..  this is Not a cure .. allthough there is
very little inflamation which is visible..  this is the stage when
complications may begin  vasculitis.. heart .. neuropathies etc..

sooooo

after  ruining all the joints  the  inflamation  is nearly non existant
so called... Burnt out....

this  is  not a cure...  or remision...

complications can occure at this stage..

i hope i have this somewhere near right....  Ty for posting pics to remind us to keep taking our meds and be thankful to have the advantage of better treatment.
 
lorrie2008-11-23 23:37:01These pictures bring home the point like nothing else can.  Thanks for sharing.  I think this is a good post for all of us to see in case we decide for what ever reason to go slack on the meds. WEll I was  not really aware that the burnt out RA was end stage but it makes sense since I am havingheart pobs and  several other problems. My PCP will be taking care of that and referring me.
 
I was told that it is sort of a remission, my RD did not elaborate on anything else obout it.  Truthfully, there is not much I can do other than go to the Cardio and PCP and do what they say. I have so much to do before the granbaby gets here that I am not going to research this right now....I just want to enjoy my life for now, I will do whatever they say to do and take any and all meds. they prescribe.
 
I placed the pics on here cause mainly I wanted to share what I had/have. I think it is important that all those dx with RA know how far science has come in stopping and /or slowing this disease process. THe meds make us very ill......they have  awful and damaging side effects, but the RD's are genuinely trying to help. When I was a young child and dx with this, I was given ascriptin(SP).......a buffered asprin, that was it. I thank my RD and all the science and all the research  that I managed to escape the worst case scenerio.
Hi jode i have scoured the web.. whith no more info than you
have posted.. this has mystified my brain.. i am going to question
my doc about this..  

anyways..as  you say no good worrying just enjoy..
maybe for you, Burnt out means Burnt out.. and thats it..

Boney    hmmmm  where is Lynn 49 found this interesting...

NTRODUCTION — Despite the availability of methotrexate (MTX), other disease modifying antirheumatic drugs (DMARDs), and anticytokine therapies, approximately 30 percent of patients with rheumatoid arthritis (RA) fail to adequately respond to therapy [1] . Via a variety of mechanisms, the joint(s) of such patients may eventually be destroyed, requiring joint arthroplasty to restore function.

This stage of the disease, termed "end-stage RA," is characterized clinically by the following features:

  • Pain occurring with minimal activity and at rest
  • Periarticular muscle atrophy and weakness
  • A significant decline in functional status resulting in disability
  • Radiographic evidence of articular damage (eg, severe loss of joint space and/or erosions).

The progression of disease which culminates in end-stage RA usually occurs over years to decades. The causes of joint destruction include any combination of the following:

  • Refractory disease, which has failed to respond to multiple therapies
  • Intolerance or development of toxicity to one or more antirheumatic therapies, thereby requiring the discontinuation of agents which may have been beneficial
  • Prolonged delay in the initiation of DMARD or anticytokine therapy
  • Poor compliance with the therapeutic regimen.

This topic will review the evaluation and medical management of patients with end-stage RA. The medical management of patients with active disease and the surgical management of those with end-stage RA are discussed in detail separately. (See "Overview of the management of rheumatoid arthritis", and see "Total joint replacement for severe rheumatoid arthritis").

CLINICAL MANIFESTATIONS — When assessing the patient suspected of having end-stage disease, the principal clinical challenge is to identify whether an underlying inflammatory process is continuing, or if the joint damage and functional deterioration are due to secondary osteoarthritis. The following is a list of clinical findings which may help the clinician determine the presence or absence of ongoing inflammation:

  • The hallmarks of end-stage joint disease are pain and loss of function. Although pain at rest is highly suggestive of end-stage joint damage, an adjacent bursitis, tendonitis, or nerve entrapment syndrome may produce similar pain. These possibilities may be distinguished by findings on physical examination, nerve conduction studies, and radiographs of the affected joint, which should confirm the presence of joint destruction. (See "Overview of soft tissue rheumatic disorders").
  • To minimize the level of stress on a destroyed joint, most patients decrease their activities. Immobilization can reduce the degree of synovitis [2] . However, over time, the lack of activity results in joint contractures, foreshortened tendons, muscle atrophy, and weakness. Movement against these contractures may result in pain.
  • Morning stiffness is a symptom suggesting active joint inflammation; however, its presence may also reflect the presence of severe joint contractures and ankylosis, resulting from end-stage disease. (See "Clinical features of rheumatoid arthritis").
  • Changes consistent with osteoarthritis may develop in joints previously damaged by an inflammatory synovitis. Bony hypertrophy and osteophyte formation can therefore be observed. These features should not be mistaken for the synovial thickening observed in active RA, and can be detected using plain radiography and/or magnetic resonance imaging. (See "Clinical manifestations of osteoarthritis").
  • Examination of more superficial joints, such as the elbows, wrists, knees and the metacarpophalangeal joints, may provide a better assessment for the presence of synovial thickening, which is considered a hallmark feature of active, inflammatory synovitis. By comparison, examination of deep-seated joints, such as the shoulders and hips, may be less helpful in determining the relative degree of inflammation.
i ve always taken burnt out RA to mean that there is nothing left of the synovial fluid to inflame.  this may or may not coorespond to end stage joint damage or not.  I know that when my now replaced joints were at end stage that I was still having active RA inflammtion in those joints.I still feel the RA, Mcrheumy says it is from the damage done from the RA and believe me I have plenty of that.......it still steams me though that the RD here stated I did not have RA and never did and there was no damage evident on my xrays taken here.......grrrrrrr.
 
I am going with the assumption that the RD here is a bad diagnostician......is that spelled right?
 
My Rd has always done so much for me and bent over backwards in my case. I believe what he dx's as truth and something he has researched and learned about. His expertise means a lot to me otherwise I would not drive 3 hours to go to him!  Besides, when I go see him it is play time for me with my friends!
hi buckeye that is very interesting..  as you say end stage ra and burnt out ra
seem two different things.yet can be the same if the synovial fluid  has gone..
confusing myself now

Boney


WE all have synovial fluid, it is what helps our joints move. It is when the ligaments become inflammed that causes the problem and the synovial fluid multiplies and goes into overdrive so to speak.
 
Mine did not subside until the hand surgeon removed the ligaments that were affected. with that I had reconstructive surgery to my hands and a long journey in physical therapy to relearn how to use my hands. I lost a lot of nerve function in them so I do not always feel things with my hands.....something like a neuropathy without the stinging.
 
SInce there isn't much written on burnout RA, it must be a realtively new theory/dx maybe from some longitudianal studies. Dunno. Maybe this is what all people with RA will experience since the onset of biolics........
I am currently fighting with those bumps on almost all my effected joints.  Since meds don't work and they won't let me take more than 5mg prednisone, i live with the lumps and lumps of puss around my areas which makes them hurt far more than normal. gees bubbagump   Boney2008-05-25 13:31:00Oh man!!!!!!!!!!! They are painful! And if you accidentally scrape or cut one..............I cannot even describe the pain. Once one broke open it was so inflammed.....all this white sticky goo came out. I cleaned it and bandaged it and the darned thing was back to the same the very next day!!!!!!!!
 
I took all the meds in line but the kineret which I don;t think they use anymore....oh and the gold.......worked my way up to the Enbrel so I never used the Remicade.
 
I feel for ya, those darned things are so painful! THey are really close to the severe pain you feel when you break a bone.
the damage to the synovial lining comes first before damage to the joint or any of the support tissuesohhhhhhh I didn't know that buckeye, thanks for sharing.wow... I better get onto some meds.. fast
thank you!

Apparently I missed this the first time around............

I am super lucky. I was diagnosed rather soon after onset and started on a DMARD (Plaquinel). When that suddenly stopped, all symptoms raged and I couldn't dress, eat,and everything without help. Methotrexate eventually eased it all to my stable place. But I have never had synovial bumps, nodules, deformities. Getting DMARDS started soon is probably what saved me. I am very grateful. It's reminders of worse situations that always make me embarrassed to complain about my lesser ones, as disruptive to daily life as they are.
CathyMarie
I think it good that this thread be bought back into our view.
We all need to be reminded as to where this disease can take us if left unmanaged.

I of late have had a lot of stress within our lives and the RA is trying it's hardest to resurface.
I needed this thread to remind me that I must look after myself first and others should fall into line after that.
I had forgotten about this post till I saw the pics....it just makes my body ache more but have to remind myself like Bodak that this is what we try to avoid.

I have no insurance presently and am having a horrid time with the weather here in Michigan to the point that my daughter and her family and myself have seriously discussed Indiana again for a place to live. THe seasons are beautiful up here but are by far more extreme and I just cannot endure this much longer.

I look at my hands and can only see the faint scars from the 5 surgeries years ago which led to my RA dx but the pain is increasing, the numbing from all the nerve damage from the surgeries must be lessening.

The older I get the more I worry that this disease will have its hayday with destruction of my body.

Those pictures remind me of the pain my mother had for years and years.  She never took MTX, only aspirin, gold shots, and cortisone shots.  Her hands were so twisted, as were her toes.  She could not straighten out her right arm.  It was a very horrible way to live.  She got RA a year after I was born - she was 35 and passed away at age 77.  I can remember seeing her cry and shaking her hands because the pain was so bad.jodejjr - it was a great thread when you started it, and it still is.  RA is a chronic, debilitating disease that can cripple and kill you.  I take my RA dead seriously, and will spend the rest of my life battling the damage caused before my diagnosis and doing everything possible to stay in remission.  you're right, Cathy.
 
thanks, Lynn..
 
and I miss Boney...........  :(
Yep, it is a good reminder but heartwrenching at the same time.Prior to clinical remission my hands looked a lot like the 1st picture.  The nodules were about 1/2 the size of the ones in the picture.  Now the hand nodules have disappeared entirely along with the elbow, wrist and toe nodules.  All gone with remission.  I think it's pretty amazing.  Lindy
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