weight loss and gain after transplant

[WishIKnew]

So, I'm approaching 2 months post transplant and things are very good.  Creatinine down to 1.2.  I do have a question though.  My first month or so I lost weight - 25 pounds!  But since then I've been eating everything that doesn't run away from me!  LOL  I've gained about 8 pounds back in just the last couple of weeks.  Is this normal.  How do I find a balance?  I have been increasing my exercise.  I can now walk up to about 20 minutes before my incision site starts to hurt.  I try to walk every day if even for 10 or 15 minutes.  Suggestions?  Can you relate?

[jeannea]

This is really tough. On that amount of prednisone, all I want to do is eat. And eat. I remember that. The only thing I can recommend is try to eat healthy and stay active. I gained weight too because finally I could eat and I wanted to eat. Don't forget to enjoy the range of foods you can have now.

[jbeany]

I spent a lot of time until they dropped me to a low dose working on mindful eating.  The high doses of prednisone made me hungry even when I knew I couldn't possibly need more food - as in 30 minutes after a huge restaurant meal.  I just kept asking myself, "Am I really hungry because I haven't eaten or is it the pill talking?"  I got very good at ignoring hunger pangs.  I still gained at the start, but now that I'm down to 5 mgs a day, my weight has leveled off and doesn't budge more than a pound or two up or down.

[KarenInWA]

I've been a little different. While I was on the higher doses of prednisone (high IV doses in hospital, 50 mg for a day in hospital, 20mg for about a week, then 10mg for a month or so, 7.5mg for another month, now on 5mg) I wasn't very hungry due to the Myfortic, which I absorbed really well. I lost weight during that time. Ever since they lowered the Myfortic a 2nd time, *then* my hunger came back! I was already on the 5mg prednisone by that time, and I have gained some weight since all that happened. I have gained about 15-20 pounds. I'm okay with it for now, though! 

KarenInWA

[Chris]

I haven't had the second problem and need that. I need to gain weight. It is way to easy for me to loose it and harder togain it back. Since I was in the hospital this week the transplant doctor put me on 10 mg of Prednisone to treat a low level of something I do not know how to spell that is associated with the adrenal glands and told to eat salty food to help gain weight/ retain water (do not like salty food tho). I was told  to take it easy (hard to do that). I will see if the prednisone dose gains me weight compared to the 2.5 mg pills I was on briefly before for arthritis.

[wj13us]

Wish:

This is an important junction your at.  8 pounds in two weeks is just too much.  I hear people say all the time that prednisone made them gain weight.  Its not the prednisone that makes you gain weight its the extra calories.  The prednisone just makes you hungry.  I know its more difficult than it sounds but you need to keep a close eye on your caloric intake.  What I've done is actually keep a log of what I ate.  This was not a year or two post transplant but when I was trying to gain weight (Chris we'll get to you later).  I've already had my transplant 15 years.  I know some people say weigh you food but you can get a good idea about weight and size just my looking at it.  There are a number of free web sites where you can punch in what you ate and it will spit out the caloric and nutritional values.

So lets say you shoot for 2,000 calories a day.  Keep reasonably with in that range than weight youself in about a week.  If you notice your weight still going up cut it to 1,800 calories.  If it goes down, add.  Unless you still want to loose more weight I'd thy to keep it stable until your able to do more vigorous excising, gaining lean muscle.  You don't want large flucations.  Keeping your body weight and fat content in a normal range will make you overall more healthy and is much better for you transplant in the long run.

Chis: 

I've been skinny all my life.  I'm at 5'7" and weigh 138 pounds.  In my 20's and 30's I did a lot of weight lifting and actually got up in the 160's.  But now in my 50 that's just too hard so I've simply accepted the fact I'm skinny and will never look like Mr. America.  But if you interested in packing on some muscle your whats called a "hard gainer."  Look into the series of books called "Beyond Brawn" the system worked for me.

Bill

[mcclane]

Mine was different, after transplant I gained about 8-9 kgs (all of it fluid).  Only until now that I am somewhat close to my dialysis weight, I range around 88 kgs now, but I used to top off at 95 kgs.

Yes, as others have mentioned, since my weight has come down, I noticed that my appetite has increased alot (thanks prednisone !).  It wasn't at all noticable when I had all that flujid, but since the fluid has come off (most of it anyways), I am hungry often.  I combat this by chugging lots of water in one shot.  I'm slowly working my way up to 2 L, and eventually around 2.5 - 3 L daily.  I find though if I chug a 591 mL bottle of water in one sitting, that pretty much kills my appetite, which means I don't eat or snack on anything.

Like you, I've increased my workouts to 1 hour and 45 min, it used to be only 30 min. 

[Sax-O-Trix]

Wish...  I missed that you received a transplant!  Congratulations!   

[cariad]

Wish:

This is an important junction your at.  8 pounds in two weeks is just too much.  I hear people say all the time that prednisone made them gain weight.  Its not the prednisone that makes you gain weight its the extra calories.  The prednisone just makes you hungry.  I know its more difficult than it sounds but you need to keep a close eye on your caloric intake.  What I've done is actually keep a log of what I ate.  This was not a year or two post transplant but when I was trying to gain weight (Chris we'll get to you later).  I've already had my transplant 15 years.  I know some people say weigh you food but you can get a good idea about weight and size just my looking at it.  There are a number of free web sites where you can punch in what you ate and it will spit out the caloric and nutritional values.

Bill, it IS the prednisone. I know this from 30 years of hard time on that drug. I also know this from studying prednisone extensively for my master's degree. I don't really understand how you can say that you are naturally skinny and that it was too much work for you to maintain a certain weight, but you cannot see that this goes both ways - it is a lot of work to maintain any weight that differs significantly from your own set point. So why shouldn't people who are heavier also just accept their weights? Higher weight does not automatically equal unhealthy.

Diane, listen to me, please. This is my core issue - prednisone and weight gain and the utter flipping lie that if you just diet enough or exercise enough you can overcome the biology of this. It devastated my relationship with my parents. They put me on a 1000 calorie/day diet and I was still huge on massive doses of prednisone. I read with interest the article debating whether 1200 calories/day should be considered torture for Guantanamo prisoners. I was put on less than that for years and I was a child trying to actually grow. If you have some 2 hours/day to exercise, more power to you, that is fabulous, but most of us lack that time and energy. Exercise is great, do as much as you can, just make sure it's fun.

There is a reason that one of the side effects of prednisone is described as "cushingoid appearance". It is because you are taking synthetic cortisol, the same hormone that causes Cushing's Disease. People with uncontrolled Cushing's Disease are going to find it well nigh impossible to lose weight.

Also, you just rapidly lost 25 pounds, which is NOT healthy, but I think since you lost 25 in a month, putting back 8 in two weeks still leaves you with a weight deficit. It is completely understandable that you would rapidly regain weight that you rapidly lost. That is often how it works.

Let me tell you one of my bitter horror stories about the dangers of weight fixation. I was quite underweight for about ten years before my second transplant. I was stuck in an anorexic spiral. I also had two kids in that time, both times I went from about 95 pounds to 110 practically overnight. With my first son I tried not to even look at my weight because I was absolutely mortified, but I believe I went close to 150 pounds, which, unless my math fails me, was gaining half my body weight over again. And I heard all the time (ALL THE TIME) You were pregnant? I couldn't tell!!! After the baby was born I think I was back to 95 within 4 months. (I am not naturally thin, I starved myself and worked out obsessively.) Then surprise, baby number two was on the way. Started gaining weight quickly as I knew that anorexia can kill an unborn baby. Then I went to my OB's office, did not see a doctor but an NP, and I told her I was short of breath. (I knew from personal experience that short of breath could mean miscarriage.) I was about 5 months along, I had originally had an appointment for two weeks after my previous appt, but had to reschedule, so it had been a month since I had been there. She looked at my chart and told me that I was short of breath because I had gained 10 pounds in two weeks. I told her about the rescheduling - that it was actually 10 pounds in a month - and she ignored me and kept on about my weight. I told her (without mentioning the eating disorder) that I don't accept weight criticism anymore because I wasted too many years having my weight strictly monitored. She ignored that. I left there completely shaken, weighing 136 pounds at 5 months. At 8+ months, when I delivered my little boy, I weighed 134. I was not consciously dieting, but I couldn't eat after that conversation. My son was born just over 4 pounds - he is healthy now, but it was a battle to get him there. I tell you all this to give some insight into why I take these comments with unwavering seriousness.

One of the cleverest anthropologists in existence is a leading expert on glucocorticoids, the class of hormone that prednisone falls into. Weight gain is absolutely a side effect of these hormones - commonly called the 'stress hormones' but their primary function is metabolic. So, yes, you are tampering with your metabolism each time you take prednisone. Anyhow, there are many studies showing that excessive cortisol (from stress) leads to a shorter, fatter population. If you want to lose weight because you are unhappy with your appearance, be nice to yourself, because so long as you are on high doses of the preds, you will likely struggle. Low carb is the way to go - eat like a diabetic. Insulin (from carbs) reacts with the cortisol to bring about fat accumulation. Learn about the glycemic index and try to only eat foods with a low score.

Sorry, don't mean to drone on and on but given my experiences I cannot stand by and watch someone agonize over weight gain on prednisone and not jump in with my thoughts. Good luck to you. Check with your doctors about coming off prednisone, or getting to a maintenance dose as fast as possible. (1-2 mg/day)

[Chris]

For me, since going on 10 mg of prednisone I am easily nauseated by smell or during eating of food. I haven't read the fact sheet, but so far weight gain eludes me. When I go to tx clinic, I will inquire more since this is making me eat less due to nauciousness.

[cariad]

Chris, not everyone will react the same to meds, and there are most definitely people who do not gain weight on pred, but most will. I read a case study about a guy addicted to prednisone and he showed none of the physical side effects. He was using it as an upper and trying to bully the researcher into giving him more of it. I could have made a fortune peddling my stash to this guy. Anyhow, I know addiction's a serious topic but I found that study really amusing.... and enlightening.

[Chris]

Iwould prefer the weight gain and the prograf hairloss that seems to be common!

My luck the tx clinic will just give me anti nausea med so I can be afraid of taking showers again!

[cariad]

Iwould prefer the weight gain and the prograf hairloss that seems to be common!

My luck the tx clinic will just give me anti nausea med so I can be afraid of taking showers again!

I think we'd all love to be able to choose our side effects.

What's the connection between anti-nausea and a shower phobia? Are they giving you zofran? There is another tablet with a really long name that helped me when I was throwing up right after surgery (excruciating). Then there is the big gun - ativan. All of them made me ridiculously sleepy. Hope they find the answer for you.

[WishIKnew]

You all are so helpful.  I'm trying not to obsess, trying to make healthier food choices and move more each day.  We'll see.  The weight gain seems to have leveled off at least for the last two days....  Time will tell.  I see my doc next Thursday, I'll ask his advice, too.  It's so helpful to hear everyone's experiences with this!

[Chris]

Iwould prefer the weight gain and the prograf hairloss that seems to be common!

My luck the tx clinic will just give me anti nausea med so I can be afraid of taking showers again!

I think we'd all love to be able to choose our side effects.

What's the connection between anti-nausea and a shower phobia? Are they giving you zofran? There is another tablet with a really long name that helped me when I was throwing up right after surgery (excruciating). Then there is the big gun - ativan. All of them made me ridiculously sleepy. Hope they find the answer for you.

I think it was generic zofran, started with a d. I thinking dizapam, but not even 40% sure on that. I gave the pill to the recycling company for proper disposal so I can't go back and check. When I was on it, it was really weird so I stopped taking it. It brought on a phobia of being under the shower and to a lesser degree of splashing water on my face which is totally abnormal for me because I love taking showers and being clean. Zofran in the hospital races my heart rate for a couple hours and do not like that feeling, not to mention the burn when they inject it through the IV.

[Restorer]

Generic Zofran is ondansetron. Diazepam is, like Ativan, a sedative/tranquilizer/anti-anxiety med (brand name Valium). I don't know if diazepam will treat nausea, other than making you too high/sleepy to care about it. 

[Chris]

Was leaning towards it wasn't that. I'll have to dig out my pdr

[wj13us]

Sorry Carid but its not the prednisone.  A prednisone pill weights about 1 gram so one a day will be 7 grams a week.  You can't gain 8 pounds in a week by eating only 7 grams.  The only way to gain 8 pounds it to eat 8 pounds in excess of what your burning, simple physics.  Sure prednisone effects your hormones and metabolism but you then need t adjust your calorie intake to compensate for it.

Bill

[cariad]

Sorry Carid but its not the prednisone.  A prednisone pill weights about 1 gram so one a day will be 7 grams a week.  You can't gain 8 pounds in a week by eating only 7 grams.  The only way to gain 8 pounds it to eat 8 pounds in excess of what your burning, simple physics.  Sure prednisone effects your hormones and metabolism but you then need t adjust your calorie intake to compensate for it.

Bill

I am going to assume the part about the weight of the tablet was a joke and ignore it so that my head does not explode.

You most certainly CAN gain 8 pounds in a week by eating next to nothing - this is not physics, it's biology. Why do you need to adjust your calorie intake to compensate? Because, you might, heaven forbid, allow me to drop my voice to an earnest whisper - gain weight - and be less aesthetically pleasing to a handful of shallow idiots? I'd love to know why I was so heavy as a kid on 1000 calories per day, and why I looked like every other post-transplant kid. A growing child cannot gain weight on 1000 calories/day.... or can they? With a few extra grams of metabolic hormone, they can, they do, and they should NOT be encouraged to drop their caloric intake even further. I went many days on zero calories, but I really started to drop the weight when I just stopped taking the pills. Magic! Or more likely, science!

The calories in/calories out theory has been debunked so many times it doesn't even merit getting into. I remember a woman on one of those 'mystery illness' programs describing very sudden weight gain and she was telling the doctors that she hardly ate a thing and one of those delightful medical professionals said "I bet if we locked you in a closet for a week you'd lose weight". Meanwhile, I'm shouting at the screen "She's got Cushing's, you twits!!!" Even after they diagnosed her she was not able to lose weight. I've been called a liar many times over my caloric intake and I will never, never let it stand again. I was starved for years and these doctors wanted me to go even further with it because ZOMG she's weighs more than the average kid her age. It had nothing to do with my labs which were perfect each and every time. I would certainly hope that the world's leading transplant doctors knew perfectly freaking well that prednisone causes weight gain in most people - my cousin with stage 4 brain cancer was on it and he blew up even though he was usually too sick from the treatments to eat. I asked my mother why no one thought to starve him and shame him for his weight gain and she did not think this was amusing. He stopped taking prednisone and tada! Weight is gone.

This discussion reminds me of an episode of The Office (American version) I saw once in which they were having a weight loss contest, their office against some other office. The boss, Michael, is trying to get them wound up to participate in this contest and one small blonde woman states "My doctor says I need to gain weight" to which Michael retorts "If you gain weight, you'll die." It was brilliant satire because it was entirely grounded in the reality of this country's attitude. I jumped off that crazy train a few years ago and no one will ever get me back on.

[wj13us]

Yes it is physics. You are saying that if I weigh 150 pounds and consume 4 pounds of "stuff" in a week I can end up weighing 158 pounds?  Sorry unless your running around near the speed of light that's just impossible.

If I'm wrong both Albert and I would love to know why.

Bill

[cariad]

Yes it is physics. You are saying that if I weigh 150 pounds and consume 4 pounds of "stuff" in a week I can end up weighing 158 pounds?  Sorry unless your running around near the speed of light that's just impossible.

If I'm wrong both Albert and I would love to know why.

Bill

Bill, you've nearly lost me. Are we still talking about prednisone and weight gain? There is so much that they do not know or understand about how weight works. I do believe Albert would request that we leave him out of it. I'll have to see if I can contact my brother (the atomic physicist) and ask if he has any idea what you are talking about.

I do not want to kick off a huge physics debate, so I will say that there are many things that physicists do not understand. Same goes for those in the biology field. It is not just a matter of increased hunger - I am absolutely living proof of that. I ate 1000 calories per day for years and gained quite a bit of weight. I have honestly never heard anyone in all my years of intense dieting mention the weight of the  food as a factor, except in terms of portions. The idea that you will gain what the food weighs is, uh, silly is probably the nicest word I can think of. You have said yourself that you do not gain weight easily. Some do, and for those people, dieting is probably the flipping worst thing you can do to yourself. I still don't understand why you allow yourself to not put the effort in to achieve a specific weight, but suggest that those who are heavier should do so. 

Jbeany's suggestion of mindful eating (similar I imagine to intuitive eating or HAES - health at every size) is a great one. The country is filled with scores of people - the vast majority women, I hasten to add - who have been told that they do not fit the laws of whatever science is being wielded against them and so that makes them LIARS. Many of these people will tell you that they 'dieted up' to obesity. This is certainly supported by Robert Sapolsky's work on glucocoritcoids - dieting causes stress, stress triggers the hormonal cascade, releasing cortisol into your system, and you screw up your metabolism and gain weight more and more easily.

My mother has boxes and boxes of notebooks writing down every bite I ate for years. (She once asked me if I wanted them. ) I weighed probably 20 pounds more than those idiot charts said I should. No doctor has ever been able to explain this, they just say I am lying, my mother is lying. I was there. It happened. My mother today is mortified that she ever did this to me, and she has her own bitter stories about being called a liar by doctors. She was once shamed in front of a pack of interns on rounds, where the doctor said right in front of her "I don't think the mother is watching what she eats." My mother could easily be diagnosed an obsessive-compulsive perfectionist. Sorry it doesn't fit with your worldview, but it does not mean it didn't happen.

However, back to Diane, I would say there is a strong possibility that unless you have scientific laboratory conditions in your home, that those 8 pounds could be partially down to regaining much-needed hydration. It could also be your scale not being perfectly accurate, weighing yourself at different times of day in different clothing, etc. I can remember many times in my life where I gained or lost weight with no reasonable explanation as to why. Don't we all have those experiences?

It is great that the weight gain is leveling off and that you are not obsessing. I have to stress that if you lost 25 pounds that rapidly, your body will not be happy about that and it does not surprise me in the least that you gained some back quickly. Like I said, I gained around 50 pounds in eight months of pregnancy and I was not a big eater during that time as my husband can attest. It was my system making the most of every last bite I consumed - I cannot explain it, nor can anyone else I reckon. It was also very different the second time, but I was markedly further into renal failure. I don't remember if you have kids yourself, but it seems many women struggle to eat at some point during pregnancy, yet they gain weight. I certainly did.

Anyhow, I would suggest you concentrate on eating healthy foods and getting as much enjoyable exercise as possible and let the weight do what it will. You're off dialysis! Enjoy!

[wj13us]

This is going to be my last post on the subject.

Caraid - I was going to go over how the human body is just a series of complex chemical reactions where the right side of the equation has to balance with the left.  And the only way to increase the mass of the human body is bring in more mass than the body uses or disposes of.  Yes its that simple.  They key is consuming the right mass in the right quantities and the right compounds.  Yes a compound like prednisone will alter some of those reactions so adjustments will be necessary.  The simple though, and one you seem to be promoting, that prednisone makes you gain weight.  Therefore you take prednisone therefore you will gain weight.

But I'll keep it short.  What I did want to say is that though I don't post here often I do read.  And I see you get into a lot of these pissing contests with a lot of posters here.  I'm not falling for it.  I don't seem to have the time that you have to post pages at a time.  Look at your last post.  You spend the first half criticizing and being condescending me.  And saying even the experts don't know how all this weight gain stuff works.  Then send the second half giving advice.  So either you smarter than the experts, you and your family defy the laws of physics and chemistry or you your just rewriting what you read without any analytical thinking.

So in shout please don't respond directly to any of my posts, you will not get a response.

I try to give a prospective of someone who has a long term transplant who has had a good experience and is thankful for modern medicine for what they have done to allow me to live as long as I have.   

Bill

[cariad]

Bill, I am not sure why you are taking this so personally, and I certainly did not wish to offend you, but perhaps you can see that this is an issue of the utmost importance and sensitivity to me. I nearly killed myself by not eating. Telling people that have to adjust their caloric intake if they start gaining weight on prednisone is always going to get a response from me. Your experiences are valuable to this forum, but I come at this with an equally valid set of experiences and a far more cynical view. I do not apologise for that. If you had been berated for your weight gain on prednisone for years of your childhood, then find out from your own research that there was really no sound, medical reason for it, you wouldn't take these discussions lightly either. You said yourself that prednisone affects one's metabolism (usually - there is no always in medicine I've found, especially not with hormones) but then you also said it was not the prednisone. The really silly thing about all of this is we probably mostly agree, but we are somehow not making ourselves clear to one another.

I think the people who know me here know that I do not consider myself an expert, just another long term transplant patient who tries to help people avoid the grief that I endured when I fear that they are headed that way. I do not see the criticism and condescension that you see, and would ask for clarification but you have ignored my few questions and have already made your decision to ignore the rest of this discussion, so that's your prerogative. Whether I respond to information in your posts in future will depend on what they say - you really do not get to choose who responds, but I will certainly do my best to avoid your posts per your request. No one is forcing you to devote time to this, so if you don't have it, then absolutely, don't bother. Diane asked for input from whomever had some to offer, and I offered mine.

[Chris]

Are we talking Kreb's Cycle per chance?

[WishIKnew]

I was told today by my transplant nephrologist that the average transplant patient gains 20 pounds within the first few months, prednisone or not.  They have no worry at all about my weight gain.  I joined a gym and go three mornings a week.  Starting with simple slower paced workouts until I build up my stamina.  Trying to eat lots of fruits a vegies.  I was very successful with Weight Watchers years ago so  I'm pulling out some of those tried and true recipes.  I'm trying to both not obsess and be proactive at the same time.  I appreciate all of the input you've shared and am sorry for the controversy this topic seems to stir up.  Everyone's experiences are valuable.