Rheumatoid Arthritis and weight loss (cachexia)

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weightlossWeight loss is a touchy subject.  In the ‘healthy’ world it’s a touchy subject.  It seems almost every woman wants to lose weight, whether she needs to or not.  We’re conditioned to believe that weight loss is good.

But sometimes people lose weight because they are unwell.  They may be very unwell, and weight loss is a sign of many serious diseases.  But this doesn’t occur to us, because weight loss is so revered in our culture.

So this post is just asking people to please, stop and think.  Remember not all weight loss is good.  What if a person is losing weight because they are sick?  What if they have an autoimmune disease that is completely out of control and ravaging your body?  What do you get?

Well, this is what I got.

You look great! (Genuine compliment. Er, thanks…)

How are you losing so much weight?  Tell me your secret! (Stops listening at the mention of the word ‘arthritis’)

You have lost too much weight now – you are starting to look gaunt! (Jealousy rearing its ugly head.  Yeah, that’s right.  Be jealous of the sick girl. )

One of my close friends actually told me what the mummy crowd was saying about me behind my back.  Too thin.  Looking old.  Looking tired.  Funniest comment was that I had developed a turkey neck.  (Turkey neck.  LOL.  Yep, that’s really going to upset me when I have full blown rheumatoid arthritis…but thanks for your support!)

My friend just continued to tell me I looked great and she wished she could lose weight too.

At least she wasn’t bitching behind my back.  She was trying to enlighten me about what people were saying about me.  It hurt, but it actually helped me turf these people out of my life. Added fuel to the other insensitive things they had done.  One of the women was the one who told me ‘rheumatoid arthritis is not a serious disease anymore’.

At no time did any of them consider that I wasn’t well.  That I couldn’t keep food down.  That my body was fighting a disease 24/7 and it wasn’t weight loss, it was wasting they were seeing.  Even when they noted that I was looking too skinny for my height, and that I looked ‘tired’.

Still no one bothered to think that this weight loss might not be on purpose.

My rheumatologist was very concerned.  He would see me once every three months or so, and I would have lost another 5 kilos.  I lost nearly 25 kilos in all.  He continued to run more tests, he has always been convinced that there is something more serious going on than seronegative Rheumatoid Arthritis.  Technically he diagnosed me with Mixed Connective Tissue Disease (MCTD), which was a combination of Rheumatoid Arthritis, Sjogren’s Disease , myositis and Lupus.  I meet the diagnostic criteria for Rheumatoid, but not quite for Sjogren’s or Lupus.

So he was concerned about weight loss.  To him it was a clear sign that my systemic disease was out of control, even though my blood work looked good.

A good rheumatologist will not rely on blood work alone.

Weight loss because of disease is termed rheumatoid cachexia.  Cachexia means ‘wasting syndrome’ – muscle atrophy, weight loss, loss of appetite, anemia and of course fatigue.

The formal definition of cachexia is the loss of body mass that cannot be reversed nutritionally: Even if the affected person eats more calories, lean body mass is still lost.  To a doctor, this indicates a primary pathology is in place.

People often relate this to cancer.  But it also occurs in serious autoimmune diseases as well, among others.  Cachexia is caused by tumour by products (in cancer) and cytokines which are over produced in Rheumatoid Arthritis.  (Biological DMARDs basically work by blocking various cytokines)

Makes sense.

I guess it’s another way that rheumatologists can assess the severity of disease.  I’m only realising in hindsight why I was considered ‘moderate to severe’ when I am seronegative and all my blood work is generally pretty good.

All my reading told me that seronegative rheumatoid arthritis was generally mild.  I believed it, because I wanted to believe it.  I was in denial, and in some ways, I still am.

Years on, I realise that my disease has never been mild.  Had my blood work been positive, I would have been able to access more aggressive treatments here in Australia.  Would it have made a difference?  I don’t know.  There is really no point wondering about it. I am here, in this place, now, and the only way is forward.

So how to combat the weight loss and muscle wasting?

  1. Healthy diet.  Lots of good nutrition, healthy calories.  I increased my protein intake considerably.  It was hard to eat more when I had no appetite, but it was necessary for my health.  I didn’t gain weight, but I slowed my weight loss.

 

  1. Quality multivitamin.  Just to top up my nutritional needs.  Rheumy said it sure can’t hurt.  This was added to the folic acid, vitamin D and vitamin B supplements I already take.  And fish oil.

 

 

  1. Lift weights to preserve muscle.  The real danger of the weight loss is muscle wastage.  I lift very light weights for someone of my size, but adding a Pump class to my gym routine helped me retain lean muscle mass and strength.  It also may have helped me work up and appetite!

 

This was all really hard work.  And it was totally misread as me trying to lose weight, rather than me trying to preserve my weight and fight my disease.  Insult to injury.  Happens a lot with RA!

The thing that really stopped and then reversed the weight loss was starting on prednisone.  That beloved/hated drug that does so much good and so much harm at the same time.  The weight gain aspect didn’t worry me much –  even though I am now about 10 kilos heavier than my ‘ideal’ weight (whatever that really means).

It’s hard to care so much about your weight or not fitting into skinny jeans when you’re fighting Rheumatoid Arthritis.  Perspective is a wonderful thing…

But I’m sure my ‘friends’ are happier now.  I’m sure they are now talking about how much weight I’ve gained!

Of course these people are no longer my friends.  Silly me, they never were my friends!

7 COMMENTS

  1. I was always a Pepsi drinker and I switched to Diet Coke. Suddenly I started to lose weight and I just figured it was a miracle drink. The weight was practically falling off of me. Funny thing though – I was exhausted and my hands and feet were really sore all the time .

    So it turned out to be RA, like you, and Diet Coke is not the weight loss answer

    Annette

    • I hear you, June. I’m at my heaviest right now. We just have to remind ourselves that prednisone makes it very hard to keep the weight down. Just have to do the best we can.

      Arthritic chick signature

  2. Yeah but I’m wondering where is this 28 pounds that I’ve packed on. Ok I’m certainly not really hiding it but I still can fit comfortably in my clothing. I still BUY THE SAME SIZE. I asked the dr is he sure his scale is good. I see the number but I’m stuck on how. I’ve tried to do everything right but I will say – NON-EXCUSES I AM MENOPAUSAL. I had a hysterectomy two years ago and now…. Well you can find me laying here on the bed – butt naked, windows open and ceiling fan blowing and its about 50 degrees. Yes, I’m aging and enjoying “personal summers” about once per week for thirty minutes!!! Need I say – hubby is confused too. I’m generally very modest. Lol.

  3. Hi! I just discovered your blog – thanks so much for this post. I have just been diagnosed with seronegative RA this year, and have just started using MTX in the last two months. It’s working wonders for my arthritis and I’m having minimal side effects, which is a blessing. Like you I was told that my arthritis was mild – I am seronegative, and my CRP and ESR are only mildly elevated. The thing that’s got me worried at the moment though is that I have just discovered that I have lost 8kg in the last 5 months. I didn’t really notice it, but some of my friends started to tell me that I was “looking great” and when I finally weighed myself I got the shock of my life. I haven’t done anything to lose the weight, and in fact have probably eaten more unhealthily and exercised less. I am overweight, and am currently about 10kg heavier than my ideal weight, so nobody understands my concern about my weightloss. I feel like this is completely out of my controlled and am really anxious – surely this rate of weightloss is unsustainable?? Anyway, thanks for your post. It’s nice to know I’m not alone!

  4. Hi Annette!!! The only time I’ve ever lost weight since my RA dxn was after I had my youngest daughter, 16 yrs ago. I dropped 3 stone and I’ve no idea how. Now I’m on the other end of the scale and desperately trying to shift about 30lbs that has gone back on due to lack of mobility/ability to do anything remotely calorie burning.
    I have just reached day 21 of being back to my yoga practice and I can already feel my leg muscles getting stronger, I have some muscle atrophy also and am trying hard to build myself back up again, especially since I’ve started to get SI area lower back pain. Which I have to say seems less of a problem since I’ve been back to the yoga. I’m doing a good practice about 4 times a week & it makes me feel better emotionally as well as feeling that bit stronger muscle wise. Even on the days it takes everything I have I’m still pushing to do at least 20 minutes. My body needs it, it needs something to try and keep from further atrophy & to protect my back from my awkward gait due to hip pain.
    Oh and yea my labs always look great too and I’m sero-neg also. If only I felt as good as I look on paper!!

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