Post transplant steroids and weight gain

[Jie]

It makes me really sad to see patients tell themselves it is about diet and exercise. I was very active and was already on a permanent diet. There is only so much that diet and exercise can do when you are dealing with such a major disruption to the metabolism.

I think this is a conflicting statement. If one can control her or his diet and have a good exercise, the weight gain is not a big problem. If one fails to control her/his diet, this is another issue (failing on diet control does not mean the diet does not work, and there are lots of people who fail to control diet without any steroids). Why some people can control diet and others do not is more than just a metabolism problem.  All transplant patients I know with steroids, most of them do not have over weight problems. With steroids, controlling diet would be more difficult than without it, but the key is still the balance between input and output. Diet and exercise are the key to maintain the balance. For patients with steroids, there are very limited options for them besides diet and exercise. 

[sico]

Im 15 months from my transplant and would be lucky if I've gained half a kilo.
Not everyone gains weight from the steroids and increased appetite gained after transplantation.

[RichardMEL]

crap! I'm envious!

I've gained around 7-8kg on my pre-tx dry weight. Dude!!!

note to self: cut down on double cheeseburgers - it might help! 

[cariad]

It makes me really sad to see patients tell themselves it is about diet and exercise. I was very active and was already on a permanent diet. There is only so much that diet and exercise can do when you are dealing with such a major disruption to the metabolism.

I think this is a conflicting statement. If one can control her or his diet and have a good exercise, the weight gain is not a big problem. If one fails to control her/his diet, this is another issue (failing on diet control does not mean the diet does not work, and there are lots of people who fail to control diet without any steroids). Why some people can control diet and others do not is more than just a metabolism problem.  All transplant patients I know with steroids, most of them do not have over weight problems. With steroids, controlling diet would be more difficult than without it, but the key is still the balance between input and output. Diet and exercise are the key to maintain the balance. For patients with steroids, there are very limited options for them besides diet and exercise.

A conflicting statement? What?? Jesus! How dare you come on here and essentially call me a liar. I did not "fail" to do anything, and someone who knows nothing about me has zero call to pretend to know what the hell he is talking about. The diet - which was exactly one thousand calories per day for a growing child, did in fact fail. Were you there? Because I was. It did not matter in the least if I was ravenously hungry, I was a kid and my parents had ironclad control over what I ate. If I reached my calorie limit, I was done eating whether I wanted to be or not. I was also an avid tennis player, went swimming in our lake in summers, skating on the same lake in winters, biked all over the neighbourhood exploring, and many other activities. My parents are both thin, my siblings were all thin (that's called genetics!) and we all had access to the same food - except I had access to greatly reduced quantity.

Wow, Jie, this is easily the most offensive and arrogant response I have ever received to one of my statements, and about my own life no less. I don't care how many transplant patients on steroids you supposedly know. Your anecdotal non-evidence is laughable. I was on the pediatric renal ward and the kids that I saw post-transplant all looked like me. Just because you believe that tired mantra that diet and exercise will lead to everyone being some mythical perfect weight does not make it true. "If one can control her or his diet and have a good exercise, the weight gain is not a big problem." So, everyone on steroids reacts exactly the same!

I have studied the effect of this steroid over years and years. It is notorious for weight gain, it is notorious for adding fat to the abdomen and face. Of course not every patient gains weight, and doses are on balance lower than 35 years ago when I had my original transplant. There is a case study of a man addicted to prednisone in a medical journal, and it was noted that he had none of the expected physical features of someone on massive doses of prednisone. That doesn't mean anything! It certainly does not mean that people who do have that reaction to prednisone are failures.

Cortisol in short doses should make you lose weight - your body is trying to shed baggage under stress in order to allow you to run faster, as in, the fight or flight response. Over the long term, a person will typically (NOT always, there is NO always with human biology) gain weight under long term cortisol exposure - the stress response - because the body is trying to store up reserves to get through whatever crisis it assumes you are in. Yet again, we see basic human evolutionary principles at work.

"All transplant patients I know with steroids, most of them do not have over weight problems." Talk about a conflicting statement. This tells us exactly nothing about the issue under discussion. Do you know what dose I was on as a child? Are you somehow privy to information about my age and starting weight? Even today, some people have to take high doses, some people don't, some people tolerate it with few problems, some get horrific complications, some, many in fact, gain weight despite constant efforts to diet and exercise (and more and more scientists are coming around to the understanding that a higher weight, in and of itself, does not necessarily mean poorer health). You can blame yourself for your own appearance and health issues all you want, but don't you dare come at me with a lecture about what a failure I must have been. I nearly died of anorexia - twice. If there is one thing on this earth that I know I can do, it is stick to a damn diet.

[edersham]

The members of this site who post here share more intimate details about their bodies and their disease here than they do with their own family. Those who have received transplants are taking a varied cocktail of drugs and supplements that no neph can perfectly tie side effects to one prescription.  Even they describe it as more art than science. But one thing comes across pretty clear. Yes the short term high dose steroids begun right before transplant make you feel great for a few days. But for most people the daily long term dose of steroids given either as part of the protocol,for a rejection episode or some other reason(as in my case) causes weight gain, emotionalism and hatred for the steroids in most people. This is not usually just about controlling diet and exercise. I exercised a tremendous amount through hard labor when I was on the steroids and gained 29 lbs and in 6 mos off the steroids I have exercised less and lost 15. I only post about my personal experiences and what I have learned works for me. I would never try to tell another kidney patient  that all their steroid problems can be fixed by proper exercise and diet control because for most it wont work.
I read the other members successes, struggles,frustrations and rants and identify with and encourage them to continue the fight  Cariad, if I still had a company I would hire you on the spot just for the way you defend your positions.  Go girl
Ed

[cariad]

But for most people the daily long term dose of steroids given either as part of the protocol,for a rejection episode or some other reason(as in my case) causes weight gain, emotionalism and hatred for the steroids in most people. This is not usually just about controlling diet and exercise. I exercised a tremendous amount through hard labor when I was on the steroids and gained 29 lbs and in 6 mos off the steroids I have exercised less and lost 15. I only post about my personal experiences and what I have learned works for me. I would never try to tell another kidney patient  that all their steroid problems can be fixed by proper exercise and diet control because for most it wont work.

Thank you, Ed, from the bottom of my cynical old heart. Patients hear enough about how they are the cause of their own problems, and weight seems to be the one that brings out the most finger-pointing and shaming.

My mother to this day will, with very little provocation, tell you a story that perfectly encapsulates her quick and cruel education in the medical world: I had just been admitted to hospital, the stupid one that almost killed me with adult doses of Digitalis, totally contraindicated for renal paitients. I was rather emaciated, so not sure why the issue of diet was under discussion, but the attending physician was making his rounds with all the little interns and my mother was sitting in the room with me. The doctor said to everyone within earshot, as if my mother were not even there, "I don't think the mother is properly keeping track of what the patient is eating." My mother always ends this story with "If you ate a cookie, I would not only write it down, I would DRAW the cookie so I could show the doctors how big it was!" That truly awful hospital aside, my mother was obsessive about doing just exactly what the doctors said, seeing as it was likely a tad scary to see one's own child so close to death. The physicians at the second hospital told her not to let me gain weight after transplant, so you better believe this was her all-consuming mission for years. And it did not work. I know from where I speak, both personally and academically.

Cariad, if I still had a company I would hire you on the spot just for the way you defend your positions.  Go girl
Ed

For this, Ed, I just cannot thank you enough. You've made my day! Time to go attack that job search with renewed enthusiasm.... 

[MooseMom]

I just want to make it very clear that NO ONE is "judging" my cousin in ANY way; we are just all so grateful that he is alive and is doing so well.

I apologize profusely if my initial query in ANY way suggested that there was some "failure" on the part of any patient who was taking steroids that resulted in weight gain.  In fact, my question really suggests exactly the opposite.  I was just curious to know what exactly was the biomechanism behind steroid-induced weight gain.  It would be the same sort of question as "What is it about how phos binders work that can cause constipation", or "What is it about how cyclosporine works that can cause excessive growth of gum tissue?"  I just like knowing how and why meds work the way they do; I seriously thought about going pre-med in college, and that basic curiosity still exists in me.

Anyway, I've learned quite a bit about the topic from all of the replies here for which I am grateful, and I am sorry if my initial post dragged up any bad memories for anyone.

[edersham]

Moosemom,

Our rants had nothing to do with your initial query. I didn't even remember it when I posted.
Never stop asking questions.

Ed

[MooseMom]

Moosemom,

Our rants had nothing to do with your initial query. I didn't even remember it when I posted.
Never stop asking questions.

Ed

I know, but I just wanted to make myself clear.  The rants are very instructive in their own right.

[Chris]

Wow cariad, a 1000 calorie diet, I was first on a 1800 and then a 2000 calorie diet and still was thin (well still am ). I thought my calorie intake was low as a kid.

[cariad]

Wow cariad, a 1000 calorie diet, I was first on a 1800 and then a 2000 calorie diet and still was thin (well still am ). I thought my calorie intake was low as a kid.

Yeah, and I grew up thinking that 1000 calories was the absolute maximum that I should ever eat. I called my mother to let her know that they were debating whether that calorie intake should be considered torture at Guantanamo Bay. She was not amused. Yet, this is what the diet industry tells adult women they should be eating. Kids, of course, need calories to do little things like grow and develop and should never be calorie restricted. Now, restricting things like glucose in diabetics, absolutely, or limiting any kids intake of processed crap.

My mother was queen of the latest nutritional fads (she still is, though it has morphed into a supplement obsession). There are many classic American foods that I never tried until I went off to prep school, or never. We never had Hostess anything, (I ate my first twinkie right before taking the SATs, and to say I was not impressed is to understate), rarely had kid cereals and the only branded peanut butter we ever had was Knudsen (Peanuts and salt - That's all!). Today, I can see the wisdom in all of that and have adopted many of those policies in my own home. What I have not done is shunned white flour so that even cakes and cookies are whole wheat or bought artificial sweeteners and fake fat by the barrel. My philosophy is if you want health food, don't look for it with cakes, cookies, or a frozen dinner, when you want a dessert, have a proper dessert, preferably made at home with no chemicals, and better tasting. Anyhow, I was not only on a low calorie diet, it was a diet consisting of low-fat (for that was the craze back then) and low-salt, with fake sugar, bland vegetables (at least those were real), skim milk (yuck) and lots of animal protein (until I went veg and never looked back). I was still probably 10-20 pounds overweight, which is hardly anything, but on a kid, it looks worse than on an adult. My mother has even said, sheepishly, to Gwyn that she knows she put us all through a lot with these weird diets of hers, and she did tell me that after major, invasive, dangerous surgery, "you should have been pigging out on protein and fresh fruits". I highly doubt it would have made a damn bit of difference to my appearance, and my mother and I might just be on friendlier terms today.

Anyone on steroids who wants to lose weight, low-carb is going to be your best option. Low insulin levels will stop the corticosteroid from binding to and stimulating the fat cells in your abdomen. That is science, well-established. However, low carb cannot overcome every weight problem, and maybe, just maybe, the weight is not a "problem" after all, it is the rigid, blinkered way that many health professionals view weight. Medicine has advanced so far, but if you are over some stupid ideal weight, it often is no better than the dark ages.

[jbeany]

I think the medical profession's take on BMI is changing already.  When I was getting signed up for the list, all I heard was BMI, BMI,
BMI.  You need to be.......THIS weight.  I was talking about weight loss and gain and diets with one of the docs while I was in the the hospital at the beginning of the month, and saying I was glad to finally have my guts back in place so that I would (eventually) be able to start exercising again.  I said my BMI numbers said I needed to be under 145.  The doc shrugged and said "BMI isn't as important as you think."   

Well, yeah, I agree - when my recommended weight is 145, and I started out all those years ago at 230, I didn't need a formula to calculate that I was fat.  I had a mirror and a closet full of plus-size clothes for that.

Besides, thanks to surgery, I'm on a no-fail diet right now.  Eat anything but chicken broth or crackers and throw it right back up.  I'm 17 pounds under what I was when I went in for surgery, and I don't know if I've lost all the edema yet or not.

[cariad]

I think the medical profession's take on BMI is changing already.  When I was getting signed up for the list, all I heard was BMI, BMI,
BMI.  You need to be.......THIS weight.  I was talking about weight loss and gain and diets with one of the docs while I was in the the hospital at the beginning of the month, and saying I was glad to finally have my guts back in place so that I would (eventually) be able to start exercising again.  I said my BMI numbers said I needed to be under 145.  The doc shrugged and said "BMI isn't as important as you think."   

Well, yeah, I agree - when my recommended weight is 145, and I started out all those years ago at 230, I didn't need a formula to calculate that I was fat.  I had a mirror and a closet full of plus-size clothes for that.

Besides, thanks to surgery, I'm on a no-fail diet right now.  Eat anything but chicken broth or crackers and throw it right back up.  I'm 17 pounds under what I was when I went in for surgery, and I don't know if I've lost all the edema yet or not.

BMI is such a useless marker. I seethe every time I hear of someone denied a transplant solely on the basis of BMI, a glorified height/weight chart. If there are no other medical contraindications to transplant, then there should be no hard and fast BMI number that excludes patients. And weight loss surgery to be allowed to have a transplant??!! It's the lobotomy of our generation, a horrible medical experiment based on insufficient research, maiming and killing innocent people.

I am glad that you are seeing doctors who can think for themselves, jbeany. I wish more people on IHD would stand up for themselves on this issue. There is no evidence that increased BMI, by itself, creates a greater risk to a transplant patient. In fact, studies in both dialysis patients and the general population have shown that people who fall into the 'overweight' category have the longest life expectancies in their respective populations. If they have longer life expectancies, why is that the overweight category, and not the "healthy" or "ideal" category? Don't anyone bother arguing to me that the diet and medical industries are not colluding with each other. It's bad science.