Comments on: Rheumatoid Arthritis Muscle Wasting: Rheumatoid Cachexia

By: Kelly Young

Kelly Young — Tue, 10 Apr 2012 15:27:20 +0000

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…

By: Belinda Langley RN

Belinda Langley RN — Tue, 10 Apr 2012 14:53:40 +0000

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.

By: Kelly Young

Kelly Young — Thu, 02 Feb 2012 03:59:22 +0000

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.

By: Linda Basta

Linda Basta — Wed, 01 Feb 2012 23:17:11 +0000

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

By: TPaplanus

TPaplanus — Wed, 01 Feb 2012 21:17:38 +0000

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.

By: Steph

Steph — Sat, 10 Dec 2011 23:07:06 +0000

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.

By: Cammie

Cammie — Sat, 01 Oct 2011 03:23:48 +0000

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.

By: Linda Basta

Linda Basta — Wed, 07 Sep 2011 03:24:11 +0000

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.

By: Mark

Mark — Sat, 06 Aug 2011 03:34:51 +0000

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

By: Karen

Karen — Mon, 18 Jul 2011 01:06:24 +0000

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.