Rheumatoid Arthritis Muscle Wasting: Rheumatoid Cachexia | Rheumatoid Arthritis Warrior

Rheumatoid Arthritis Muscle Wasting: Rheumatoid Cachexia

Wasting time on Rheumatoid Arthritis muscle wasting?

Rheumatoid Arthritis is famous for bone erosions and joint deformity. That’s bad enough, but RA doesn’t stop there. Rheumatoid Arthritis is a systemic disease which can affect all organs and systems in the body.

One of the first RA symptoms I experienced was extreme weakness in muscles and tendons. As RA moved through my joints, they could no longer support any weight. I might fall as my hip just gave way. Trying to lift a mug was impossible. It would cause my wrist to droop or my fingers to pull out of line. Will power did not matter. This from a girl who could do dozens of push-ups only weeks before.

Early in my RA treatment, I worried out loud to the rheumatologist about muscle wasting from being unable to do very much. The RA doc said, “This is not a concern.” I still worried because at the time, I couldn’t wash my own hair.

Almost overnight, I went from lifting 50 pound bags of concrete mix or fertilizer to being unable to hold onto a glass of water. Maybe it’s just me, but I became convinced that RA must be affecting my muscles, tendons, or ligaments. I have not found many clear answers, but one that I have found interesting is Rheumatoid Arthritis muscle wasting or Rheumatoid cachexia.

What does Rheumatoid Arthritis muscle wasting / cachexia mean?

These words refer to the loss of muscle mass and strength which is typical of certain serious diseases, including Rheumatoid Arthritis. Rheumatoid cachexia refers to cachexia in Rheumatoid Arthritis patients.

Here’s a ten dollar answer from Revista Brasileira de Reumatologia June 2009: “Frequently, patients with chronic or terminal diseases, such as cancer, AIDS, congestive heart failure, tuberculosis, chronic obstructive pulmonary disease, cystic fibrosis, rheumatoid arthritis (RA), Crohn’s disease, and others, present cachexia. Table 1 shows the main metabolic changes found in cachexia. Cachexia associated with RA was first described in 1873 by Sir James Paget; this term refers to body cell mass loss and high energy consumption at rest, which occurs in RA…”

One recent (2009) study about Rheumatoid Arthritis cachexia found that cachexia was present in 1of every four to five Rheumatoid Arthritis patients of low disease activity (“controlled RA”.). Rheumatoid Arthritis muscle wasting was found not to be associated with improper diet. They looked at metabolism changes as a possible connection to the cardiovascular disease of RA, suggesting “the increased prevalence of coronary heart disease in RA patients may, at least in part, be attributed to inflammation and change of fat metabolism.”

Some facts about Rheumatoid Arthritis muscle wasting /Rheumatoid cachexia

Here are some valuable excerpts from the associated editorial in Arthritis Research and Therapy:

  • Weight loss and muscle wasting are common features of untreated RA, as originally described by James Paget in the 19th century. However, rheumatoid cachexia, from the Greek meaning ‘bad condition’, was not recognized as a common problem among patients with RA until relatively recently.
  • Rheumatoid cachexia refers to the loss of fat-free mass, predominantly skeletal muscle, that occurs in RA. Loss of body weight does not always occur; in fact, loss of body fat-free mass is often accompanied by increased fat mass and stable body weight. Rheumatoid cachexia may affect up to two-thirds of all patients with RA
  • Despite great advances in the treatment of RA, it appears that rheumatoid cachexia persists even after joint inflammation improves.
  • Rheumatoid cachexia may be an important risk factor for cardiovascular disease and excess mortality in RA.
  • Elkan and colleagues demonstrate a link between rheumatoid cachexia and metabolic syndrome, further reinforcing the need for therapy directed beyond inflammation and at the metabolic consequences of RA.
  • Evidence from cancer, heart failure, and HIV infection strongly points to weight loss as an independent predictor of poor outcome (reviewed in). The average loss of fat-free mass among patients with RA is between 13% and 15% – approximately one-third of the maximum survivable loss of fat-free mass.
  • Loss of fat-free mass and higher fat mass are each associated with greater disability in RA, and low body weight (that is, both fat and fat-free tissue) in patients with RAis associated with threefold higher mortality. Thus, rheumatoid cachexia may be an important contributor to increased morbidity and premature mortality in RA

Was it Rheumatoid cachexia?

I don’t know if cachexia is what affected my muscles so greatly. Actually I doubt that was the only factor for me because of the suddenness of the symptoms. I have a few other clues to pursue. The quest continues.

Recommended reading:

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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62 thoughts on “Rheumatoid Arthritis Muscle Wasting: Rheumatoid Cachexia

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  • July 7, 2010 at 11:08 am
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    Wow – I have been feeling weaker and weaker. Maybe I should look into this. My diagnosis is PsA but the pathology is similar it seems. This disease leaves more unanswered questions than ones with answers. I read your info often, thanks for taking all the time required to keep this blog going. Your a wonderful asset to the RA community.

    Reply
    • July 7, 2010 at 11:17 am
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      Thanks Debbie. 😀 I don’t know if there’s a way to monitor this. I wonder?

      Reply
  • July 7, 2010 at 12:11 pm
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    I was just talking about this, this morning, about how I have loss the muscle mass, my concern. So yet again my friend, you have given me information on exactly what i was thinking about.

    Reply
    • July 7, 2010 at 12:30 pm
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      Let’s keep asking questions Taf. Maybe we’ll get somewhere together.

      Reply
  • July 7, 2010 at 12:12 pm
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    Ever since my symptoms started in earnest (I’ve had intermittent joint pain for years) I’ve had a lot of soft tissue pain. The doctor says this is part of the arthritis. (It’s starting to look like I might have both RA and PA). I definitely feel weaker, but have attributed this to being less active and the habit of protecting my joints and inflammed tendons. I noticed this alot with my grip which is quite weak now although I have only very minor hand involvement. Did you find anything that connects soft tissue pain with muscle weakness?

    Reply
    • July 7, 2010 at 12:39 pm
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      Protecting and immobility is def not good for muscle. But read the page where the image was taken. Cytokines are involved in muscle depletion & changes in metabolism. This is not dietary or behavioral. For me the weakness was literally overnight. That was not the effect of gradual deterioration from loss of use. I’m glad researchers are beginning to look more at why RA kills. The articles I read said the heart disease of RA is not like other heart disease patterns, so the usual ways to treat that are not sufficient for us.

      Soft tissue pain is in all the old books/ lists as RA symptom. Makes sense when you see what it does. Btw, my hand involvement has gotten steadily worse. From what I read, it eventually does get the hands as I said on that Myths link. I’m glad I spent the first year doing knitting & crossstitch even though it hurt. No way I could do it now.

      Reply
  • July 7, 2010 at 2:54 pm
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    I was windsurfing for the last time the summer before I was diagnosed with RA. The next summer I could not cut all the oranges for my daughters soccer game.( My 12 year old son finished the job) Some of it was joint damage, my feet and hands. My Rheumatologist also sent an occupational therapist (with RA too!)to my house for several visits to teach me how to protect my joints yet still be able to function. My hands and feet had almost immediate damage from the first few months of RA.
    I had to get full, custom made othotics for my shoes. I was given wrist braces and instructed when and how to use them. I was instructed to get myself to an Aquafitness class, but the lowest level. The theory is that RA weakens the tendons and ligaments, muscles have to make up for it or the joint is pulled out of alignment. That is why they want us to exercise. To build muscle. But it has to be done gradually, and there are limits. However it is definitely worth the effort.

    Reply
  • July 7, 2010 at 6:16 pm
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    “This is not a concern.” -your doc
    Well, it isn’t a concern…for them. All things are relative. I’m not sure what does concern them. Sorry Kelly, that’s some total bull, they pretend as if we like to make things up for attention or something.

    Reply
    • July 7, 2010 at 6:31 pm
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      I’ve come to believe that many of them may be trained to think that way. They don’t want us to panic out of hand; but we are grown-ups, so we need to be able to discuss facts. And have our concerns taken seriously.

      Reply
  • July 8, 2010 at 10:29 am
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    wow.. and wowerwoman you are!! Thanks Kelly for all you do for yourself and for us.
    This article has described me to the tee!
    Now I know.. and no thanks to my battery of physicians.. and their “battery” of hush-mouthness.
    No your heart irregularities are not caused by RA..see your FP…
    No- your gastrointestinal problems are not caused by RA…see your FP…
    No your shortness of breath are not caused by RA..see your FP
    No if you had such nausea and lack of appetite as you are discribing..you would be losing weight… see your FP
    No your suddenly out of control blood pressure is not caused by RA..see your FP
    OK so I did in each case.. i saw my fp
    my FP gave me oxygen…and changed my blood pressure meds…put me on nexium…and did a 2 week cardionet monitoring and told me that it is normal to have pvc’s
    (my pvc’s..skipped beats…come two and 3 in a row and several over a minute’s time.. making me dizzy… that is NORMAL???
    heeeeeeeeeeeeeeellllllllllllllllllllppppppppp
    you have helped me with all this info Kelly.. thanks to you i know why they aren’t doing any more.. they can’t.. but why the heck dont the used honesty and be forthcoming..
    do they want to incite hopelessness in their clients by minimizing our “complaints”?? or do they truly think that we are so ingorant and only THEY can take the truth..
    BULLoney… now my anger is on the table and in 2 hours I just so happen to have a Rheumatoligist appointment..
    PERFECT TIMING KELLY THANK YOU THANK YOU THANK YOU THANK…

    Reply
    • July 8, 2010 at 10:32 am
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      good luck w/ your appointment Dianne!! So hard to get in there and advocate for oneself. I find it much easier when it’s for my kids. But we have to…

      Reply
  • July 9, 2010 at 9:50 am
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    appointment done… and now set up for echocardiogram and appointment with pulmonologist.. and she put me on a diet saying that i am killing myself with what i am eating..
    (gained 2 lbs in one month) blaming my shortness of breath on that?? how about blaming my shortess of breath on the swelling and prednisone and RA??
    hmmmmm
    diet it will be… she will get to see everything that goes into my mouth this month
    by the way.. she added humira for the symptoms that ARENT there?? and ARENT part of RA??????????????? hmmmmmmmmmmmmmmmmmmmm
    oh well… off to get my prehumira ppd..

    Reply
  • July 9, 2010 at 6:17 pm
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    I am so glad that you posted this. I was wondering if anyone else had this problem. I don’t know about muscle mass but I do know that at times, always at night, I get so weak that my legs cannot hold my body up on their own. My boyfriend, Marc, has to help me walk. Once this happened after leaving the movie theater, it was embarressing.

    Again, thank you for posting this. I will have to bring it up to my rheumatologist and see what she thinks.

    Reply
    • July 9, 2010 at 9:14 pm
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      Hi Alecia, Can you tell when it’s mucsles & when it’s joints making you weak? It’s also hard because it could be tendons! I hope you can get some answers from your doc.

      Reply
      • July 11, 2010 at 1:07 pm
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        Hello Kelly, I’m not sure. All I know is that at night if I’m not relaxing my legs will give out on me and I’ll fall. Also I won’t be able to walk without help nor be able to get off of the ground. It’s been happening more and more and I’m starting to get worried. Thankfully I have my rheum appt in two weeks.

        Reply
  • July 11, 2010 at 6:10 pm
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    Alecia, depending on your history and the specifics of your joints themselves, two otherr things to rule out are MS and polymyositis. You weren’t trying to taper off of steroids at those times, were you?

    Reply
    • July 11, 2010 at 7:55 pm
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      No I wasn’t, I haven’t used steroids in a few months. I have an uncle with MS so that could be a possibility. My PCM, physical care manager, doesn’t believe that I have RA while my rheumy believes that I do.

      Reply
  • October 3, 2010 at 7:59 pm
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    So what this article is saying is that there is no help for me? That this will continue and i will die of RA Cachexia? there is nothing i can do? Or is there domehing i can do? This RA is bad enough, has changed my whole life, now i find it has shortened it with no help in sight
    depresred

    Reply
  • January 26, 2011 at 4:38 pm
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    Hi, I am not the one with the ra, my hubbi has had for some years now. He was recently given a course of steroids. Oh my god i can’t beleive it! I had my old hubbi back. Don’t want to go into detail but the muscle power it bought back was great. He was eating good, he had energy in more ways than one. Has anyone had this same effect and any advise please.
    Caring wife of sometimes loving husband
    Jean

    Reply
    • February 1, 2012 at 6:17 pm
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      Sorry JeanMac….
      It’s a deception. prenisone is known as the Sleeze drug. Makes you feel wonderful, but it will kill you slowly.
      I know have ostoporosis, glaucoma & cataracts, a huge belly, a round flat face, and my skin tears with the slightest rub. Always say…if I was 80, I’d triple my dose & have a few yrs of quality life. (Im 59 and been on it 15 yrs)
      Just be careful…Keep it as low as you can, cuz he may need bursts of it later on.
      Meanwhile…hope a biologic will work for him

      Reply
      • February 1, 2012 at 10:59 pm
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        I never heard prednisone called a “sleeze drug,” but mixed feelings are common. It is a double-edged sword. When you call it “a deception” that reminds me of my rheum doc who was very anti-pred who called it a “mask” and a “lie.” Of course if a reality is very bad, a mask that covers it can be helpful at times.

        Reply
  • February 6, 2011 at 9:48 am
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    Tuft’s university did some research on strength training for RA to help counteract muscle wasting issues back in the late 90s. They seem to have had some success. You might want to look at some of their work. Miriam Nelson put together a layman’s book “Strong Women and Men Beat Arthritis”.

    Reply
  • May 3, 2011 at 5:00 pm
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    I’ve been struggling with this issue as well…I’m a former marathon runner and went from running with no difficulty to running with an insane amount of muscle pain afterward. I have RA — rheumatologist indicated it was just “disuse”, which I knew was not the case. I started taking bioidentical hormones (testosterone) and the difference has been amazing. I do time-release pellets. It starts to wear off after about 2 months. I did a half marathon (in San Francisco, no less) at about the two-month point & two weeks later could not do a 3 mile run. It’s not a perfect solution but better than nothing!!

    Reply
  • May 3, 2011 at 10:56 pm
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    A few studies have also found that a 12 week course of amino acids (HMB, arginine and glutamine) helped significantly with muscle wasting in both RA and cancer. It looks like there are several products out there that offer this combination — found one called “Juven” and another on a body building website. I have no idea what kind of concentration they used in the studies but I’m planning to give it a shot…

    Reply
  • June 17, 2011 at 12:28 pm
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    Interesting. Now I more clearly understand one reason why I stayed so thin from age 5 into my early 20s, when treatments weren’t so advanced and my disease wasn’t well controlled. One reason was my pain and fatigue level left me with zero appetite; the other, I theorized at the time, with the heat in my joints it was like my ‘engine was running’ 24/7.

    As I’ve gotten older, the treatments have gotten better, and my disease is better controlled – and I can’t lose weight to save my life. Exercise, good diet, doesn’t matter – I never build much bone mass and my “fat pads” stay right where they are. I now wonder if the introduction of Enbrel to my treatment cocktail is the cause of my 15 lb. weight gain in the past 18 months??

    Reply
    • July 17, 2011 at 9:06 pm
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      I’m glad you mentioned Enbrel… Now I realize that at least 10 lbs of the weight I’ve gained has been since last November, and that is when I started Enbrel. I blamed it on lack of activity and the holidays at first.

      Reply
  • June 17, 2011 at 12:29 pm
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    Er, I meant “muscle mass”, not bone mass. LOL It’s a Fosamax day so I’m bone fixated. 🙂

    Reply
  • July 11, 2011 at 8:16 am
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    Love the info. I’m so glad I stumbled upon your page. It is very upsetting when you used to work out a lot and suddenly it takes great effort to throw the ball for the dog. Sometimes I do think I’m becoming a hypochondriac or going crazy so it’s good to see I’m not alone and it really isn’t in my head. Now if we could only find a fix…Having a hard time accepting it for what it is.

    Reply
  • July 12, 2011 at 3:27 am
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    I’m getting muscle fatigue when walking faster on flat ground (um, very relatively speaking on “faster”) or on uneven ground, particularly in the back/side of one leg. Don’t know if it’s RA related or prednisone muscle loss or something else. A few visits back my rheumy did notice quadricep muscle loss.

    Reply
  • July 17, 2011 at 9:03 pm
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    I definitely haven’t lost weight. I think I’ve gained about 50 or 60 lbs since I first started feeling symptoms in 2006. And even though I am not totally sedentary (I do still work full time), I am very surprised at how little muscle strength I have anymore.

    Reply
  • August 5, 2011 at 11:34 pm
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    I am having this issue. I’ve had RA for some 13 years. Methotrexate (20mg/week) is beginning to seem to have little effect. I switched to a Paleo diet 6 months ago (and lost 10 lbs) but my muscle wasting seems to continue. I’m 5’9 and down to 135 lbs. Upper chest is just bone basically. What does one do? Will a biological drug prevent this? Should I jump on Enbrel?
    Need to fix this – don’t like the “threefold increase” in mortality issues.
    Mark

    Reply
  • September 6, 2011 at 11:24 pm
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    I have had quite a lot of muscle wasting. It’s very upsetting how week I’ve gotten. I do get PT & OT regularly and I do think it helps. I also just starting taking a Whey Protein powder.That form of protein has been show to be helpful in muscle wasting especially in AIDS patients. Hope it can help in RA as well.

    Reply
    • October 12, 2014 at 12:39 pm
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      Linda–

      I’m 58 and have had RA for about a dozen years. Am on Enbrel which my rheum. and I think works best for me. I’ve also gotten progressively weaker over the last dozen to where I struggle to stand from sitting because my quads, gluteals and “core” muscles aren’t doing their jobs. (The low point came when I needed help getting off the toilet!)

      Finally I decided to start physical therapy and am also seeing an OT once a week. Also similar to your situation, I have also tried to drink a protein shake per day. Seeing a little improvement after about a month but I still have my moments!

      I hope things are better for you. God bless you and Kelly and all my fellow RD sufferers…

      Reply
  • September 30, 2011 at 11:23 pm
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    Wow. This explains a lot for me. I have already had a near ruptured tendon in my left hand. I had to wear a splint for my thumb for several weeks in the hopes that it would heal so I wouldn’t need surgery. My rheumy told me that the RA wreak havoc on your tendons. How to adequately care for yourself is very difficult when you have RA. There are days when I feel overwhelmed with all that this disease brings to my life.

    Reply
  • December 10, 2011 at 6:07 pm
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    I have this problem as well, I’ve lost approximately 50 lbs or 28% of my pre-diagnosis body weight. Does anyone have any experience with anything that might increase appetite or slow metabolism (in general)?

    I’m on methotrexate and its doing good things for the arthritis but not really for the weight loss ( no gain yet and I eat ~2900 calories a day). I don’t know what kind of arthritis I have yet (my doctor didn’t think that was important, and only said it wasn’t RA) but it might be Psoriatic.

    Reply
  • February 1, 2012 at 4:17 pm
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    So, the 50 lb weight loss I’ve experienced may not be the “good thing” I’ve been told it is? It happened after I was diagnosed but also after I had been taking 100 mg of Topamax to control migraines (one of the side effects of Topamax is appetite suppression). It was a fairly rapid weight loss, during which I began to notice muscular weakness in my legs and trouble standing for any length of time. The pain in my hips and lower back increased with standing time also. Could this be related? Do I need to discuss this with my Rheumy? Will she even listen? All good question, I think.

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  • April 10, 2012 at 10:53 am
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    Does your rheumatologist monitor your weight, and question losses and gains? I have pointed this out to every doctor I have gone to, but I have never heard the term rheumatoid cachexia until today, when a friend led me to an article on chelation. I looked up rheumatoid cachexia, and was brought to your site Kelly. I’ve poured over numerous articles this morning on rheumatoid cachexia. I am preparing myself for my next visit to my rheumatologist. I’m not sure how much muscle wasting I have, but I have had an approximate 20 pound weight loss over the past 3 years. I think it’s because I am in a constant catabolic state. Rheumatoid cachexia is associated with severe disease activity. I have had to poke and prod my rheumatologist to do anything so far, and most times, I feel bullied by him. I’m just going to start dropping articles on his desk. Thank you again for a very informative article. I am curious to know how many rheumatologists pay attention to this very important factor.

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    • April 10, 2012 at 11:27 am
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      Hi Belinda. Thanks for your valuable feedback. I do hear similar stories so I worry that not very many rheum docs are aware of it – only the really good ones. And even then, they can be influenced by poorly informed sources that tell them certain RA disease symptoms are “rare,” leading them to assume we are exaggerating or imagining symptoms.

      Personally, every doc I’ve had weighs me at every visit. (Although they never take my temperature – I have a fever often.) I was very lean to begin with and I’ve lost a pound a year. They never mention it. Once, an MA (never have seen a nurse for my rheum care) remarked “That’s odd” about the weight loss. Not so much, I thought to myself since I know my disease is constantly active over the past 6 yrs.

      It worries me since I know what I’ve lost is bone and muscle. If you are getting “aggressive” treatment, not sure what else can be done. New guidelines are a bit more aggressive about monitoring and adjusting, but weighing is not part of any disease measure I know of…

      Reply
  • June 15, 2012 at 1:29 am
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    I know someone with RA who is about to blow away because she is so very underweight. I think she must have anorexia also. Her friend says she is prescribed two protein drinks per day. Do you think it is possible that on RA is responsible for this extremely lean body? Is it possible to eat your way into a normal weight? This person is around 30 years old and has had RA since age 18 months. THanks.

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    • June 23, 2012 at 9:57 pm
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      I guess anything is possible, but I’d doubt an additional diagnosis (anorexia) if RA is already diagnosed. RA is a wasting disease. Eating more may help a little, yes, but ideally, the disease needs to be suppressed. How does she respond to prednisone? Many patients respond well to low doses that can lessen the inflammation & most do gain at least some weight on it. What does her doc say about this? I’d ask the doc about what can counter this.

      Reply
  • August 8, 2012 at 8:29 am
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    I am new to RA but not new to losing my strength! I used to be able to paint a room in one day if I wanted to. Now I can’t open a new jar of pickles or a two liter bottle. I was always strong. I have terrible muscle wasting in my thighs but have had bilateral knee replacement. I do know that I am not as strong as I used to be. I am beginning to think it is from RA…..

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    • August 8, 2012 at 8:50 am
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      this happened to me quite suddenly – overnight – so I think it can be due to the inflammation which means that if the disease can be got under control, then you could get some strength back. Long-term damage is harder to overcome than sudden weakness, but the key would be to find a treatment that works for you.

      Reply
  • February 3, 2013 at 8:07 am
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    Sir,
    The matter is very useful,in addition i want to know,that,as a patient of Rheumatoid cachexia,is walking and doing exercise,will be useful for me ?,or being this a muscular disorder,and weekness, it could be harmful,that might led to swelling of joints/muscles ??, kindly advice.
    Regards,
    Sunita Jagtiani ( 42 years- female)

    Reply
  • April 16, 2013 at 4:49 pm
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    I have RA and was on Orencia in IV form for 3 years and never had a problem. Then this past January my insurance told me I had to go to Sub Q injections of it. In 8 weeks I have gone from feeling good, to being in the ER 3 times for various RA related side effects. This last time, my leg has swelled up to a point that I am unable to walk. After many tests, I am being told that the RA is now attacking my muscle tissue in my leg. is that what this is, and if so, what can I do? I am trying to get put back on the IV form of the drug, as the Sub Q are not working.

    Reply
  • December 19, 2013 at 12:14 am
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    i am a fitness instructor, and what seemed overnight i lost 13kg, i was rh- but had bad joint issue with feet hands knees elbows jaw, neck chest and shoulders which were debilitating one minute and fine the next. i suffered from reynauds phenomina and carpal tunnel syndrome, I became rh+ this year and was officially diagnosed with mixed connective tissue disease, it was good to read your article as it made sense of my weight loss, and as everyone knows that has this disease you are limited to what you can do by the fatique and lack of strength, so in my line of work this was extremely hard, but i did manage to pull back and only instruct, i lost a lot of weight and i was worried it was a cancer but i think i have had just about every test known to man to be clear of that, so thankyou because nobody has been able to tell me this could be why, and i do feel that when i am at rest that my heart rate is elevated.
    exercise is still important in my opinion as I feel that without it my symptoms would be worse and the bit i do each day helps me fight the disease.

    Reply
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  • December 28, 2014 at 9:55 am
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    I’ve lost strength in my wrists and hands very quickly. I seem to be dropping things several times a day, having difficulty opening doors, etc. Has anyone found wrist splits to be helpful for this? Though immobilizing the joints will make them hurt more, I’d like to be able to pick up and hold onto objects better.

    Reply
    • December 6, 2015 at 5:34 pm
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      When you can find one that fits right, they do help. But yes if wrists are very inflamed, it can be too painful to wear a brace at times.

      Reply
  • June 2, 2015 at 2:12 pm
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    I have had RA for 20 years and about 10 years ago I mentioned loss of muscle mass to my rheumatologist and she said it was unrelated to RA. Not that I’m looking to blame it on something, but good to know that there may be some reason for it! I started yoga about 4 months ago and it has really helped! Why didn’t my doctor tell me to start doing yoga 10 years ago? I sometimes feel that other than the drugs, I doctor myself. I want a doctor who will tell me about diet, exercise, etc.; not just suggest it, but emphasize that my quality and quantity of life depend on it!

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  • June 26, 2015 at 12:17 am
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    i am 60 now. some twenty years ago i suddenly got pain and swelling in my joints one by one which last about 4 or 5 days and disappear automatically without any treatment. ten there was 10 year period with any kind of pain or symptom. after 10 year the disease appear again and this time, it not only attack my joints but hard core of my eye. with all medical treatment and tests nothing happened or diagnosed. after one year the inflammation of eye hardcore also disappear. at present i have wrist pain called nerve compression and i am going to loss body weight and muscle tone rapidly. pls tell me what should i do.

    Reply
  • September 11, 2015 at 1:03 am
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    This site is beyond amazing. Thank you so very much for your dedication Kelly. I am unfortunately one of the RD’ers with extremely bad test scores. Although my official diagnoses was in July of this year I have been very ill for quite sometime. I lost 65pds this past year and a half. I am 55, 5’2″ and now a whopping 101 Pds. I have been reading anything I can get my hands on for weeks. The latest C-reactive protein shows a significant reduction in inflammation ( from 84.5 to 1.8) however the symptoms have been getting progressively worse. I now have a much clearer understanding of why. So once more thank you so much for all you do??

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  • November 19, 2015 at 4:15 am
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    So glad to have found this site. I have mild lupus and moderate sarcoidosis which are pretty much under cobtrol with low dose prednisone…but since the onset of my diseases I have suffred from weight loss and muscle wasting. Being on steroid and taking a high calorie diet I have gained fat but my muscle wastibg is progressive, which is a classical feture of rehumatoid cachexia and which many doctors are not even aware of.RC does deeper than disease activity…and while good disease control helps lessen it, the cachexia continues at cellular level due to chronic inflammation and metabolic changes. The protein degradation is the root cause. What my understanding is of RC, after reading thousands of article’s on it, is that it has to be addressed at many levels…good dusease control, controlling inflamation at cellular level with anti inflamatorry diet (paleo for RA has good info on that) supplements, certain amino acids like proline to control protein synthesis, resistance training and correcting hormonal imbalance which is very common in auto immune diseases. I always flare around my periods.

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  • December 30, 2015 at 4:01 pm
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    Hi, i was diagnosed with RA 15 yrs ago. I’ve been on xeljanz for 3 years. I’ve had muscle weakness going up stairs and exercise intolerance for awhile now. has anyone experienced this on xeljanz or associated with RA. I’ve been to neuro with normal EMG & don’t know what else to do. Recently thought it was due to spinal stenosis but surgeon ruled that out. I am 52yrs old and very frustrated over this.

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  • January 26, 2016 at 11:32 am
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    Dear Kelly: I discovered your website a few years ago and consider it the most reliable source on RA available. I thought you might like to see these websites on rheumatoid cachexia (you might well know of them already). Thank you for your fine research and compassion–Robbie

    http://www.hopkinsarthritis.org/patient-corner/disease-management/rehabilitation-management-rheumatoid-arthritis-patients/#exercise

    http://absc.bangor.ac.uk/Muscle-notjustforathletes.pptx

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  • October 17, 2016 at 11:27 pm
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    My rheumy, ( I love her) explained that sometimes if you have active inflammation in for example, your wrist, the active inflammation likes to travel along your tendons and ligaments like little highways. That explained why sometimes I felt more weak than pain. Like a coke can would fall out og my hand because I couldn’t grip it. Luckily I haven’t had much muscle involvement, but rather I have inflamnation in my chest bone where the ribs join up, and my collar bone.. really weird and distressing areas to have pain.

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  • February 20, 2017 at 10:39 pm
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    I’m going to say this. I have dealt with this for years and finally found a way to gain muscle back. I am on actemra shot once a week and dropping to 2.5mg of prednisone now. I went from a fine tuned machine to a completely weak man. I started a month and half ago with cardio on an elliptical with a seat. This started getting my energy back. Then I started trying to lift 15lbs 20 times every day with 30 minutes of cardio. I started getting 30lbs 3 weeks ago and added a whey protein powder plus creatine. I am 45 and for some reason this seems to be working well. I started small and have managed to move from 30lbs to 60lbs in a week. Now today I am able to do 170 with my legs, back, biceps, and pretty much jump from 12 feet up and barely have any issue. What I found was muscle mass wasn’t lost. It was like a sun dried fruit. We are losing the nutrients our muscles need and our joints. I’m still taking my shots because 2 days of a missed shot seems to start a small flare and I’m worried it will become major if I try to a week without it. Main thing I have noticed is if I do some form of cycling in the morning I feel great all day now. I just wonder how many of us were over active and became less active before RA set in. My job now doesn’t have me running all the time like the jobs I was doing 2 years prior to my RA hitting me.

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  • March 14, 2017 at 5:00 pm
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    I refuse to see tMhe rheumy I was seeing, she is useless. my regular doc is keeping me on a low dose of prednisone for now, mean while,,, I’m in Physical therapy because my cervical spine is twisted and compressed, and yesterday was told by the therapist that I have no muscle mass between my shoulder blades,,which is why my chest feels so tight and I’m having a hard time breathing,,,, I hope I remember to mention this ‘cachexia’ when I see my doc in a couple weeks, what is the point of physical therapy,,, which is causing more pain,,, if I cannot regain my muscle ? feeling frustrated and trying not to feel hopeless

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  • June 11, 2017 at 10:16 am
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    I am currently online searching for some possible answers for this sudden onset of muscle weakness. Happened onto this site and after reading so many comments, at least I don’t feel alone. I was diagnosed 12 yrs ago with RA and have had a few changes in meds during that time. I can tell you I had rather deal with pain than weak muscles!

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  • June 24, 2017 at 3:12 pm
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    I found you site this morning .
    First time to find muscle loss and weakness explanation.
    63 , diagnosed last November with aggressive RA . This was excellent help

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  • August 10, 2017 at 7:17 am
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    Hi

    Yes, bedridden for several years in agony and alone, falling down, unable to do much but a true fighter in me, I started to walk bit by bit unsteady at first. I noted my super strength little body was now thin, I lost bone and muscle mass and weight and hair. Inject immunosuppressants now. However, I learned lysine Amino Acid can rebuild muscle so I eat cashew nuts hungrily and walk my dog every day and talk to people in the park, this is giving me my strength back and muscle back. Painful it is but I am getting there bit by bit. The pain is a barrier to rebuilding your muscle for sure but ignore it if you can, I know it is horrendous, but keep it up. Little exercise is better than nothing, even lying on your back try to raise your feet of the ground and do this until you can, maybe a year away but what else are you going to do anyway? I make myself walk and carry things, I make myself do little things and suffer the pain and exhaustion and frustration afterwards then do it all over again next day. I am walking again and have had medical help but nobody to help me at all. I have found brandy and ice cream helps as well as a vegan diet otherwise!! Imagining a favourable outcome is powerful too, dream of being disease free! My walking is limited but I can do little bits and have not had a fall in over a year. I ache all the time and feel fizzy and that dark downer feeling, neck, head, jaw, all joints, all tendons, hips, ribs, shoulders everywhere but stay joking a lot. Was bedridden for five years pretty much with the odd day I could move but in burning broken glass pain. I love animals so getting my pup made a huge difference from being completely isolated except for all those blood tests. Cranberries and soya, balsamic vinegar, various oils in food, no cheeses, no acidic foods except on really sunny days. When the air pressure drops I am back where I started though and too hot makes me lose co-ordination hilariously things fly around the kitchen when trying to wash up. Stress is bad news. My neighbours smoke outside their own house but it comes into mine and go nuts at them! Best cure is a walk in the park to breathe in the air, watch the wildlife, the wild flowers, the trees, the dogs and children and chat to other old fogeys for fun. Practice using your body people and curse if you have to, get mad, get laughing, try to dance when you have brandy in your system it seems to ease up the movement quite a bit to do what you cannot do sober! Never say can’t, never say die.
    Good luck
    Cat

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