RA: The Great Catch-22

According to dictionary.com, the definition of a “catch-22” is as follows:

Catch-22
noun, plural catch-22’s, catch-22s.

  1. a frustrating situation in which one is trapped by contradictory regulations or conditions.
  2. any illogical or paradoxical problem or situation; dilemma.
  3. a condition, regulation, etc., preventing the resolution of a problem or situation; catch.

Note: Figuratively, a “catch-22” is any absurd arrangement that puts a person in a double bind: for example, a person can’t get a job without experience, but can’t get experience without a job.

Catch-22s and RA

So what does this catch-22 phenomenon have to do with RA and chronic illness? I decided to write something about it because lately I find myself referring to this term fairly frequently when trying to describe to other people what it’s like having RA and dealing with symptoms and all of the other things that go along with having the disease. I feel like I’m constantly throwing around “catch-22” in my conversations about RA and I wonder if people actually realize what I’m talking about.

“Any absurd arrangement that puts a person in a double bind” seems to describe aspects of my life with RA pretty accurately. The main area where I notice this double bind is regarding using steroid medication (prednisone) long term to help manage my RA. For the past three years I’ve been unable to function physically without it due to my disease refusing to calm down and stabilize. And frustratingly, prednisone has brought with it several bad side effects despite helping to control my inflammation during this time. Side effects I’ve personally noticed include: weight gain, inability to lose weight, weird distribution of body fat (the “Buffalo Hump” neck and fat belly), mood swings, anxiety, irritation, depression, high blood pressure, gastro-intestinal problems, weakened immune system, and a bit of insomnia (I suspect).

Why is taking prednisone an RA catch-22?

My main frustration with the drug is the extreme inability I’ve had to lose weight. I’m technically considered “obese” right now, thanks to gaining an additional 20 lbs (I was already overweight) in the last year and a half. For just under a year, I think, I’ve been trying hard to lose weight and I’ve felt that despite my efforts, nothing was really happening. I would either gain more weight or stay stuck where I was. Or I would keep losing and gaining back the same two pounds. It was driving me absolutely crazy that I felt like I was working hard at losing weight but couldn’t see any results. I suspected that my RA “wonder drug” was to blame for all of this.

I wasn’t the only person pointing a finger at prednisone; several doctors, pharmacists, and two nutritionists also told me that I needed to get off the drug in order to lose weight faster, easier, and more effectively. Well…duh (for lack of a better phrase). Prednisone has been one of my main weapons to fight against the debilitating inflammation of RA since I was diagnosed 20 years ago. I refer to it as a “wonder drug” because it is wonderful. It works and it works fast. Steroids are very effective in reducing inflammation and therefore pain. However, it’s also a terrible drug due to its many harmful side effects.

According to the Mayo Clinic, the following list is an example of some of the possible side effects caused by oral prednisone:

  • aggression
  • agitation
  • blurred vision
  • bone loss
  • decrease in the amount of urine
  • dizziness
  • fast, slow, pounding, or irregular heartbeat or pulse
  • headache
  • increased appetite
  • irritability
  • mood changes
  • noisy, rattling breathing
  • numbness or tingling in the arms or legs
  • pounding in the ears
  • shortness of breath
  • swelling of the fingers, hands, feet, or lower legs
  • trouble thinking, speaking, or walking
  • troubled breathing at rest
  • weight gain

To see a complete list of possible side effects and other information about the drug, you can read the entire article here: “Prednisone (Oral Route) Side Effects.”

How fun, right? Hardly! However, if I have to choose between severe swelling and pain and taking the drug, I will choose the drug every single time. If there are no other effective treatment options, and for me there haven’t been in at least three years, then I feel I have no other choice than to take steroids–no matter how much I hate taking them. I would rather deal with all of these nasty symptoms and side effects than not be able to walk or use my hands. This feels like a deeply unfair trade-off though.

A “no-win” situation?

Regarding weight gain/loss again: I know that losing weight would make me feel physically and emotionally so much better. Weight loss would also help my RA and especially my weight-bearing joints, such as my ankles and feet. But the dilemma is, how can I lose weight when it’s crucial that I take prednisone? Another related paradox: How can I exercise to help lose weight if I’m in pain? Exercising is not on my list of fun things to do if I’m pain-free, so add some stabbing joint pain into the mix and forget it. It’s nearly impossible to get me to exercise or do anything physical if I’m hurting.

There’s really no “win” in these situations. Instead, they’re all vicious, interconnected cycles of pain-swelling-disease-drugs-side effects spinning round and round. Do I want to look like a humpback whale or not be able to get out of bed? Somebody give me a third option, please.

RA often leads to or causes frustrating situations in which I do indeed feel trapped. There’s always a “catch,” it seems, and therefore many major trade-offs that greatly affect my life. Despite all of these challenges, which often feel hopeless, I refuse to lose hope that I can and will break free from at least some of these catch-22s someday.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (14)
  • mcadwell
    1 year ago

    Boyoboy do I know this one. sigh

    These two come from different doctors (over 25 in the past 16 years), the last “the pain is all in your head” was from September 2016 AFTER I’d shown the doctor the x-rays (plural) of my arthritis:
    – I do have fibromyalgia/I don’t have fibromyalgia/the pain is all in your head.
    – I do have arthritis/I don’t have arthritis/the pain is all in your head.

    Then there’s the sleeping/standing sitting thing:
    – Standing hurts my right hip, knees, left ankle but makes my lower back feel better.
    – Sitting hurts my lower back and right hip but makes my knees/ankle feel better.
    – Apparently I need more sides because sleeping on my left side hurts my left shoulder, sleeping on my back hurts between my shoulder blades, sleeping on my right hurts my right hip and sleeping on my stomach causes migraines.
    – Sleeping upright makes my upper back feel better but hurts my lower back.
    – Sleeping flat helps my upper back but hurts my lower back.

    Taking this medication helps this but aggravates that.
    Taking something to help the aggravation causes a different problem (pain in a different area).
    That problem can be helped if I take another medication but I can’t take it because I am either allergic to it or it prevents absorbtion of the first medication.

    Here’s the best one:
    – I’m being treated for RA, with a drug that can cause blindness, but the doctor won’t diagnose me with RA because he can’t get a synovial fluid sample for testing.

    What the what???
    Do I or don’t I have RA? If not RA then what the do I have…???

  • sharonjane
    1 year ago

    I am convinced, it seems others experience so many of my symptoms that it actually gives me the confidence that; it is not….my imagination or exaggeration. Thank you all for sharing.

  • jenniecorey
    1 year ago

    I am dealing with weight gain and little sleep on prednisone. I spoke with my doctor who has tapered me down to 1mg now. The only problem is that the 1mg isn’t working as well. I feel pain everywhere. It has never been this bad. I manage to get up every morning to go workout at 5am, come home and get ready for work, get off work and then help my kids with homework and do some housework. I am wore out by the end of the day. I am constantly pushing myself to keep moving but it hurts. I see my doctor in 2 weeks and really thinking about asking him to up my prednisone. I haven’t loss any weight going to work out in last 2 months and may have to just live with the weight. I really would rather the pain leave.

  • Sushmaghosh
    1 year ago

    I can totally relate to what you have written. Suffering with RA for 14 yes I have been on steroids for a long time, weight gain followed by avascular necrosis n hip replacement and now I continue to take steroids due to urticaria, I am unable to come out of it. Can any
    One suggest some thing for urticaria

  • Lucy
    1 year ago

    Right there with you and all the others that are in the same boat. 6 years ago a suspicious lesion was found in my lung. It was cancerous. I was on Enbrel and methotrexate at the time but had been on prednisone off and on since I was 13 (am now 59). My drs made me stop all meds but I could go back on prednisone, The lesion was cancerous so all my drs said no more biologics. After recovery, I as able to go back on methotrexate. High doses of Methotrexate and predisnone were not making a dent in my joint pain and inflammation. After several yrs I convinced my drs to let me go back on Enbrel as I had already been on it for over 10 yrs so the exposure was already there. They relunctantly agreed (with me agreeing to all sorts of annual cancer screenings). Eventually I failed on Enbrel due to neutriphil counts dropping. Same with Humira, and now I see my counts dropping on Simponi. I recently tried to slowly taper and did totally stop prednisone but I then went into adrenal insufficiency. So I have to go back on a maintenance dose and probably with be stuck with that the rest of my life. Such a true love-hate relationship.With it I can walk and work, without it=? I have all the weight gain, etc., but looks like I am stuck here. Next stop – endroconology. Another specialist!

  • Dalia
    1 year ago

    I’m in a similar boat with my lungs. I get a cold, it goes into my lungs then becomes bronchitis. I’ve been told several times that I DO have asthma and that I DON’T have asthma. Apparently my RA likes to inflame my bronchial tubes for fun.

  • SandyMcintosh
    1 year ago

    Amen. I feel like I am on a roller coaster ride. I have lost weight, took predisone, gained weight, lost weight and back on predisone for nine months. Currently I am up fifteen pounds and struggling to lose the weight. Some days exercise is impossible with fatigue and pain. I feel like someone has played a cruel joke on me because I have every symptom of RA except weight loss! I am praying I do not have to gone on predisone again. The drug is a nightmare… sleepless nights, depression and weight gain. Inhave felt like some strange person I do nit know while I am on predisone. I will keep the course though! If I do not get it right today, I will try again tomorrow.

  • haven1823
    1 year ago

    I took prednisone for three years. It did help the inflammation and pain from Ra. But the side effects were so much worse. I developed steroidal cataracts, avascular necrosis in both my hip joints, weight gain, sleepless nights. So I weighed the pros and cons. I decided to take myself off prednisone, it was rough. But so worth it. I had to have cataract surgery, two complete hip replacements, lost the weight, and I sleep better. The pain from the ra is worse that natural labor pains. And I had three of them That way. It I realized the damage prednisone did to my body. I manage my pain now thru sheer will. I take Actemra self injectibles once a week. This has helped me a great deal. I do not take any pain meds. With my Drs help I have learned to manage my pain and deal with it without more meds. I know my story is not like everyone else’s. this is me. My story. I hope my story helps others.

  • sjm
    1 year ago

    I totally could have written this article. I’ve gained 50 pounds in the last 3 years and been on Prednisone for most of that. I told my former rheumatologist that I knew I was gaining weight and that it wasn’t good for me and the rheumatoid disease. I’ve tried everything and he never said anything until one of my last visits with him, he said,, you need to lose weight, I almost said out loud duh that’s what I’ve been telling you. I hope there is another solution right now I’m on 20 mg a day and cannot go down any lower without flaring. But the good news is my new rheumatologist seems to be up to date and caring. I was a fitness instructor, flight attendant and mother of four . very active all my life, now I’m sore fat and if I had my way just sit around which I know that’s not good for me so I try to move in spite of the pain. I hate it when the doctors look at you like well you just eat too much . The prednisone makes me crave sugar and increases my Hunger plus any water weight I suppose, so I do fall into overeating once in awhile but I don’t eat that much on the whole. Any encouragement suggestions is deeply appreciated. Thank you

  • haven1823
    1 year ago

    I hope you find a way to get off prednisone. It is very hard to get off this med. this med has long term problems. I was very healthy, worked out everyday. Ate all the right the things, I couldn’t understand how I could get this horrible disease.. it was a struggle to get off prednisone. But I did. I lost the 50 lbs. I dealt with the horrible pain. I have confidence that you can to. I am here if you need any help and encouragement.

  • Anke Schliessmann
    1 year ago

    I definitely know what you are talking about. Even though I have been on low dose prednisolon (in average 5mg) I suffered from many side effects, but especially the weight gain was the worst of it. That is why I decided to taper prednisolon down to 0 in spring, not saying that this is/was easy. I’m still suffering and detected, that it takes time after tapering down for the body to return to normal, and that if you are on a biological, this could be an additional reason not to lose weight. So how do I survive without prednisolon? For really bad days where there is a need to go to work and function, I’ll take Tramadol which cuts off the high pain levels, but doesn’t do anything around inflammation. The side effects of Tramadol are calculable for me and this works. During those bad day I try to eat even more of anti-inflammatory food and also consider to take an CBD extract from hemp. This is not a perfect setup and I definitely need to relax more (somedays even on working days, so I need to take a day off), but at least I’m able to continue work (most days) and also go to the gym (at least once a week). That is now a good precondition to try weight loss once more, even that I’am on my TNF alpha blocker. I think the most important thing for me is – never ever give up to improve the personal situation, even against all odds.

  • Lawrence 'rick' Phillips
    1 year ago

    Joseph Heller may not have understood the impact of prednisone on the human body but if he had he could have placed his novel in a rheumatologist office. For me prednisone is first about blood sugar control and I do not get beyond that. It is some nasty stuff for certain.

  • Richard Faust moderator
    1 year ago

    Hi Rick. I recall that you have diabetes. The effect of bursts of prednisone on blood sugar is an often overlooked side effect. Are you able to take it at all? Best, Richard (RheumatoidArthritis.net Team)

  • Carla Kienast
    1 year ago

    I love the Joseph Heller novel with the same title and the subsequent movie but, like you, I hate the many catch-22s that come with RA. Prednisone is a tough one and I know you’ve been struggling. Thanks for expressing the frustration that a lot of us feel.

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