Need some anecdotal feedback here… I was recently diagnosed with a rare autoimmune disease and have to dramatically limit my protein intake until I can get treatment and put this shit into remission (hopefully). Any advice on how I don’t lose an insane amount of muscle mass? Do I lift, but lower volume? Stop lifting? Body weight only? I’ve been running with 5/3/1 for about 2 years now with great success. I’m 39 and I’ve been power lifting for about 25 years and am very experienced. Any thoughts are appreciated.
May I ask what autoimmune disease?
My answer to this is no, not if you are able. Do what you can. For me, something is always better than nothing.
Do you have to limit all protein?
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Do you need to change anything Training wise because of the disease, or you’re just thinking in response to your new dietary limitation?
Can you be specific?
I had fought through the challenges of Dermatomyositis. I was on so much corticosteroids that I was losing bone density, and was told not to lift weights at all. While still on much corticosteroids I began lifting weights again (as weak as I was). I got my bone density back up.
Not really, but my disease caused me to lose 40lbs in 5 weeks (all muscle).
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These autoimmune diseases are just horrible. I wish there was more public recognition over rheumatological, neurological diseases, endocrine diseases etc.
I’ve said it before. Instead of continually pumping out tRaNsGeNdEr AwArEnEsS and whatnot, educate the public on all sorts of rare diseases if pandering towards aggrieved demographics is so important. I think it’s stupid… But if you really want to highlight the struggles MANY go through in far higher numbers relative to the 1 in 30,000 or so legitimately struggling with gender dysphoria… take a look at rare diseases.
If anything, showing younger demographics how grateful they should be to have a clean bill of health might even serve to impart some compassion within a demographic (kids and adolescents) known to be particularly cruel.
Before the advent of modernized treatment modalities, dermatomyositis was frequently fatal! It still can be fatal if it gets to your lungs or heart! Before plasmapheresis, HNIG, prednisone etc prognosis was actually really grim.
More people should know about rare diseases like dermatomyositis, scleroderma, inclusion body myositis, polymyositis, MCTD, AS, MS, PBP, kennedys disease PLS, HSP, MG etc etc (SO many of them)
All of these diseases cripple to some extent, some can be/are fatal. While many with these diseases should be left alone, it’d be nice to make them feel less ‘alone’ or ‘isolated’ as isolation within itself is a killer.
I’m sure you must have felt like the world was exploding @RT_Nomad when you found out you had dermatomyositis, i’d be willing to bet almost everyone else had no idea what you were going through.
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The vast muscle loss coupled with Cushing’s Syndrome from 64mg/day of Medrol, made every mirror horrifying to look into. I fairly quickly psychologically adjusted to my condition, but still have trouble with the mirror to this day. I turned my attention to my childhood hobbies of model railroading and model rocketry, and later modern muscle cars.
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Wow…
That must have been hell to wean off from
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It was a lengthy time frame. But as luck would have it, I had a polycyclic case. Over a few months I would get down to taking 10 to 12mg/day Medrol and it would flare up. After a few years the doctor and I discovered that an increase to 16mg/day was sufficient to suppress my immune system. The cycles went on until I was selected for a trial use of Rituxan (rituximab). I went through two treatment cycles. Only then was I able to wean completely off Medrol.
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I agree people feel alone. There are many wonderful patient advocacy groups and foundations out there which I would strongly encourage anyone with a rare disease plug into. It’s just nice to talk to someone who has felt the same feelings as you.
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It’s called membranous glomerulonephritis and it can end in renal failure. The treatment is chemo. The disease itself won’t cause muscle wasting. But I have to limit protein intake due to the nature of the disease and its impact on the nephrons of my kidneys. I’m not sure I can limit ALL protein intake. But I need to minimize. I’m basically eating vegan without legumes. It’s lame AF.
What I’m trying to solve is: is it worse to lift without protein, or just not lift at all (or very light weights).
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Obviously I can’t offer medical advice but from someone who has autoimmune issues… I say lift as long as you can. As long as your đoc say it’s okay. I wouldn’t go balls out but keep at it. If you have established a good base things will come back quickly when you go ino remission.
I did a very quick internet search on membranous glomerulonephritis. I noticed that corticosteroids was sometimes used in treatment. If that is the case, I would continue lifting weights, but light weights. Without adequate protein, repairing broken down muscle tissue is challenged. But the supporting of weight will assist in maintaining bone density.
I saw where some (30%) respond well to treatment in a single treatment cycle. Another 30% treatment takes longer. And the rest are in a fight against renal failure.
Have you started treatment yet? I would think that it would be started immediately, but what do I know. Do you know what medications are planned on being used?
I saw on the internet that rituximab was one of the medications. When my doctor got me included in the rituximab test, he told me: Medrol is the shot gun approach. It gets the job done but with a lot of collateral damage. Rituximab is the sharp shooter.
Science tells us that you can maintain muscle mass with 60% of the volume and 60% of the protein it takes to build muscle.
So how big are you, and how much protein can you ingest? And how many sets are you doing in a workout?
If your recovery will be limited by low protein, Maybe you can make workouts less damaging to your muscles by having carbs, electrolytes and anti-oxidants like vitamin C in your body when you train. So Never Train Fasted! And think about nerdy stuff like Nutrient Timing to get the most out of what you can eat.
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That’s good advice. Thanks brother (or sister).
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@UncleD , Autoimmune issues seem to be on the rise. I have seen more and more of them in my practice at younger and younger ages.
I can share my thoughts, but there are experts to read up on for your specific issue that I highly recommend. Specifically, I’d study and reach out to Jason Fung, M.D. who is a kidney disease specialists and speaks on inflammatory diseases all over the world, including autoimmune issues such as yours. Here is a link for you:
https://www.doctorjasonfung.com/about
and
His methods to fight kidney disease also have significant weightloss “side effects” so he has become known as a weightloss doctor. Here is his Amazon page and another author’s book I recommend.
Jason Fung, M.D.: Amazon.com: Dr. Jason Fung: books, biography, latest update
Benjamine Bikman, “Why We Get Sick”: https://amzn.to/44ih09U
In any rate, you have to become an expert along with your doctors and keep on the “state of the art” knowledge. Challenge their knowledge, push them to give you their best, and act as a team member in bringing new information to them for consideration.
On the question of lifting… Keep lifting. The stimulus of exercise will help you keep the muscle and bone density you have at present. It at least slows to loss. Stay safe, work on quality of motion, and work on expanding the other qualities of performance that you can, such as functional movement, vision skills, breathing, coordination, balance, and such.
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Great advice. This is exactly what I was looking for on here. I will crank down the volume and I actually use Biotest Surge during my intense sessions (do I get paid for that product placement??) so maybe I’ll just start taking it during every workout along with timing meals before and after. I appreciate you.
Hopefully I get this bitch into remission and can post here in 18 months with a success story. Or maybe I’ll be able to fit into my wife’s jeans. Who knows. I guess as long as I’m alive and not in kidney failure I’ll be happy, but I appreciate the wisdom from you all.
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I don’t have any additional advice, but your attitude is outstanding. Good luck, sir! I predict you’ll be back here and still impressing us all.
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No problem man! Good luck! Surge should be great for this situation.
If you need inspiration, here’s a science guy talking about how to structure a low volume training block.
And a good article.
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Protein consumption is for optimal gains but is not mandatory. You most likely won’t lose any strength and can probably still make gains if your overall diet, sleep and programing is dialed in.
Did your doctor five you specific protein limiting parameters? Example:
- Quantity of protein per day (grams)?
- Quantity of protein per meal?
- Any specific protein sources to avoid?
- Are there specific amino acids to avoid? That is, are any worse than others?