Post transplant steroids and weight gain

[MooseMom]

I have a cousin who, after three years of D, got a living donor and was transplanted about 3 years ago.  He is doing very well and has been able to go back to work full time.  However, he has gained a lot of weight (he is now over 200 lbs) and simply cannot get it off by dieting.  He is on what I assume is the standard protocol for steroids after transplantation, and it should come as no surprise that this is what his doctors say is causing his weight problems.  I've read many posts on IHD about this very thing.

What is it about steroids that cause weight gain?  Does your appetite increase?  Or do they affect your metabolism?  Is there anything that can be done other than stop taking them (which is not possible for him at the moment, obviously)?  He swears he eats very little, and I believe him.  I'm just curious about the biomechanism behind the weight gain caused by steroids.

Also, I have heard of non-steroidal protocols utilized by some transplant centers.  Anyone have any experience with this?

Thank you.

[cariad]

Yes, steroids affect the metabolism. Prednisone mimics cortisol which is first and foremost a metabolic hormone. Some people produce too much cortisol and are diagnosed with Cushing's disease, whilst others do not make enough and have Addison's (like Jack Kennedy). Someone with Cushing's will almost always be above average weight.

If I were your cousin, I would eat normally and let the weight do what it wants. I try not to impose my personal views about this on anyone, but weight is generally little more than a cosmetic concern. A male at 200lbs, even a short male, does not sound all that heavy to me. He may drive himself bonkers trying to diet, or he may find himself with a serious eating disorder as I did. His doctors are saying it is the prednisone and not accusing him of lying about his caloric intake, right? If so, he is lucky. I also believe that he eats very little because I've been there.

I was never on steroids with the second transplant and as I mentioned in another discussion recently, there are articles claiming that longterm steroid use for transplant patients does more harm than good. There are many steroid-free houses out there. I would have to check, but I believe one article made a case that all transplant patients (except in special circumstances) should be off prednisone within 2 years time. If it really bothers him that much, I would say he should tell his doctors that he wants off. If he needs to do it on his own, warn him to do a slow taper, dropping no more than 1mg a week or so. It can kill you if you do it wrong. Hope this helps!

[MooseMom]

Thanks for the explanation; that's exactly the kind of information I was looking for.

I think my cousin weighs in at quite a bit over 200, but he has always been well built, and the added steroid weight probably amounts closer to 250 than 200, but I'm just guessing.  My aunt didn't tell me a lot, but what she did tell me makes me think that it's not so much a cosmetic issue for him as it is about comfort.  They live in SoCal, and the extra weight makes him quite uncomfortable when it is hot. 

Despite not having taken care of his hypertension before having to go on dialysis (he had no idea his kidneys were failing until a routine blood test showed his creatinine at 13!), he does take care of himself now, and that includes eating well with plenty of fruits and veg.  I think he just gets frustrated that he is so careful yet sees his weight just going up.  But he feels better now than he has in a very long time, so overall, he's happy and grateful.

The next time I talk to my aunt, I will ask her if he might ask his transplant docs about going off the steroids.  It may be slightly too early, I don't know.  Anyway, thanks for your reply.

[rsudock]

Moosemom the higher dose the Prednisone the more hungry you are. My first transplant I was an eating machine. I also developed Diabetes as well. The Prednsione dose was considerably higher then what I am on even now. I remember taking huge chunks of italian bread and dipping it in a jar of peanut butter...I just couldn't stop. So I did gain weight quickly at first. When the med was reduce my weight did go back into a normal range.  The second transplant I am on 20mg of Prednisone and I feel more hungry but I am not out of control like the first time around. I had crazy mood swings as well with the first transplant. I think the protocols for anti rejection meds and Prednisone are a lot lower then what they first use to be so this tends to help with all the side effects. Hope this helps!

xo,
R

[jbeany]

The high doses of prednisone for the first year made me so hungry I could have eaten an entire roast pig at one sitting.  And gone back for dessert 20 minutes later.  (I know I saw a baked apple here somewhere....)
I'm down to a level of only 5 mg.  Even without being able to exercise, I was able to stay at the same weight for the last 5 months or so.  I did have to change my diet to do that though - low carb seems to be the only thing that works for me.  I think if my sister hadn't tried a strict low carb diet and had such success with it, I wouldn't have tried it myself, and I'd still be gaining weight, though.  Apparently, processed flour makes me fat.  I still eat lots of chocolate and fruit, but that doesn't seem to matter as much.  Perhaps he, too, needs to find that one thing that packs on pounds with his metabolism.

I think the preds mess with it all - your appetite triggers go into overdrive and your metabolism slows down.

[MooseMom]

Yep, OK...this all makes sense.  I don't know what my cousin's dosage is, and you're right...maybe certain foods don't do him any favors.  I wonder what it is about pred that triggers hunger.  My ex has a brother with Prader-Willi syndrome; it is quite rare, and among the effects is an unlimited appetite.  Whatever mechanism that signals satiation is largely absent, so the temptation to overeat is constant.  So, I know that things CAN affect hunger/satiation; I wonder if there is some correlation between how pred works and how Prader-Willi affects this mechanism.

Ooooh, that was wonkish...

[RichardMEL]

I'm 7.5 months post tx.

I started on, I think, 20mg a day of preds and that made me go mega mad at times with the hunger. (and I'm surprised when I did the 3 shots of 1000mg of methylpred that I didn't jump on the nearest person and try and eat them whole!!  ). Anyway I put on between 7 and 8 kg compared to my dialysis dry weight. Obviously this was a big concern to me and the weight gain has always been discussed as common and something to watch out about. I'm now down to 7.5mg (hopefully down to 5 soon!) and I've found that my weight has, more or less, stabalised. I think it helps that I do a lot of walking for exercise, which definitely helps, but I find the hunger is nowhere near what it was, and probably more normal. There are times when I do crave naughty things like some form of junk, or chocolate, but it's more controllable.

In addition to the exercise I've found that changing to diet/low sugar drinks (eg: coke zero) helps, along with low fat/skim milk helps, and having a "skinny" coffee when I'm out. I think all the little things do add up to keep it under control.

Of course I'd love to get that weight down - the nurses still poke(literally!) fun at my "baby bump" of a tummy, but really if I can stay stable around my current weight, and Danny is doing well, it's not going to be a major concern because I may never get that off (after all, I've also passed the 40 mark, and my father put on a lot around the same time, so it may be as much genetic as steroid driven).

So I definitely keep it in mind, and keep an eye on the scales, I try to not stress about the weight so much if it's stable. Yes, unhappy it lept up so much, but it was expected, and really it is, at most, a 10% gain, which is probably not too bad. I hope anyway!!!

[Chris]

MooseMom, I thought Rush was on the Non Steropid protocol now. At the time I was looking back in 2000 they were not along with Loyola, UofI, and UofC. So that was one of the reasons I went with Northwestern.

[MooseMom]

That's really interesting, Richard.  I've heard quite a few stories like yours, and I would be curious to know exactly WHY these meds cause an increase in hunger.  That just seems to be such a weird side effect.  But I agree with you...weight gain is just one part of a big picture.  What matters is your overall health as its improvement is the whole point behind going through the rigors of transplantation.

Chris, yes, Rush says on their website that they have a steroid-free protocol, but when I asked about it at my evaluation, they just kind of harumphed as if it just a bogus selling point.  But since the waitlist is about 5-6 years, I figure I have, at the very least, four years before I'm close to getting a kidney, so hopefully that will be enough time for them to refine this particular part of their program.

[edersham]

I was on 10 mg pred for four months and I did eat everything in sight and nothing vegan, fluffy or low calorie.  I gained 30 lbs and it took two months before I lost any of it. 6 mos later I have lost 15 lbs. So even a low dose(which was to replace cellcept because of low white blood cell count . Turned out to be either bactrim or valcyte was the real cause) I hope to not get to have that experience again although nachos with a pound of cheese at 2AM are pretty tasty.

Ed

[jbeany]

I would be curious to know exactly WHY these meds cause an increase in hunger.  That just seems to be such a weird side effect.

Well, the hunger is hardly the only strange side effect.  Mood swings go right along with that - even those of us who only suffered mild ones will testify to that.  (Bawling at Maxwell House holiday commercials, anyone? That was my craziest one.)  Given how many people who aren't on prednisone eat to deal with mood swings, there's clearly a link that is likely only made worse by preds.

[MooseMom]

  Given how many people who aren't on prednisone eat to deal with mood swings, there's clearly a link that is likely only made worse by preds.

Oh, now that's an interesting point.  Yes, I know for most people, food has an emotional component.  My husband is like that.  If he has a stomach ache, he eats something.  If he is bored, he eats.  If he sits down to watch TV, he has to have a TV snack.  I've just never found comfort in chocolate; I'm not wired that way, I guess.  But yes, if mood swings bring on snacktime, then I can see how pred mood swings would just amplify that effect.  Very interesting!

[bette1]

I gained 20 lbs after my transplant last year.  Like everyone else I was super hungry all the time, plus I was eating all the yummy things I couldn't eat while on dialysis.  The other problem is while on prednisone, it's really hard to lose weight, and the weight seems to settle weird places, like your belly and cheeks.

I don't think I look bad, and my BP and cholesterol are all good, and I feel great, so I don't worry about it too much.  I am working on it, but I still think I look cute.

[Jie]

Like Richard said, exercise is the key. A lot of patients say that PD would gain weight. When on PD, I ate whatever I wanted and hardly gained any weight. The 4-5 miles/day walk/run balanced out any things I got from foods and PD solutions.  If one eats more, he or she needs to exercise more.

[rsudock]

I would be curious to know exactly WHY these meds cause an increase in hunger.  That just seems to be such a weird side effect.

Well, the hunger is hardly the only strange side effect.  Mood swings go right along with that - even those of us who only suffered mild ones will testify to that.  (Bawling at Maxwell House holiday commercials, anyone? That was my craziest one.)  Given how many people who aren't on prednisone eat to deal with mood swings, there's clearly a link that is likely only made worse by preds.

One crazy mood swing i had was when I had to start injecting myself with insulin....oh man I was screaming at my mother and threw the vial against the bathroom wall. The did a slow slide down the wall, with my hands wrapped around me while I cried...it was pretty pathetic. My mom just looked at me and walked out the door...

xo,
R

[RichardMEL]

I'm going to admit that I have had one incident of Roid Rage since my tx. I had a bit of a meltdown at work - in a staff meeting no less (OMG how embarrassing). I was kind of set up and attacked by a cow-orker in this meeting in front of a manager, and I wasn't impressed so kind of... well.. let them know about it. oops. Luckily later several people, including my (and their) managers told me they felt what they did was inappropriate and they didn't give me grief for my RR attack.

Other than that I feel like I've been fairly stable in that regard.

[rsudock]

aw Richard! 

xo,
R

[Deanne]

When I was on prednisone pre-ESRD, I ate raw veggies by the pound. EVERYTHING tastes good when you're on prednisone and I refused to gain weight. It worked. I didn't gain weight even though I wasn't able to exercise while I was on it. Because of muscle-wasting, I could hardly walk and was prone to tipping over (and not being able to get back up again). I started walking as soon as my dose tapered down enough to start to regain some strength and walked my first marathon the following year.

[MooseMom]

When I was on prednisone pre-ESRD, I ate raw veggies by the pound. EVERYTHING tastes good when you're on prednisone and I refused to gain weight. It worked. I didn't gain weight even though I wasn't able to exercise while I was on it. Because of muscle-wasting, I could hardly walk and was prone to tipping over (and not being able to get back up again). I started walking as soon as my dose tapered down enough to start to regain some strength and walked my first marathon the following year.

See, now, my neph never put me on steroids pre-D.  Instead, he put me on cyclosporine.  I was on it for 5 years, and it kept my fsgs in remission pretty well, but then the bottom fell out and it got to the point where the cyclosporine wasn't doing me much good anymore, so to protect my kidneys from even more damage, he took me off.  I'm on neither steroids nor cyclosporine; I'm just waiting for complete renal failure.  Life is so much fun right now.
So, I don't have any experience with steroids, but at least now I know what kind of thing to expect, thanks to y'all.  So, thanks for the info.

[Jie]

When I had 240 and 200 mg prednisone a day during the first two days post transplant, I need only about 2.5 hours of sleep each day and was full of energy. The prednisone is really wonderful things during a short term. Five days post transplant, I had no more prednisone and I fell like falling down to the earth from the sky. The energy produced by prednisone may need more foods to support, I guess. Another good feature of prednisone that a patient is unlikely to get dehydration when drinking enough water. Prednisone can retain water, which is good when the new kidney has not completely settled down. Of course, when the kidney can adjust water levels in the body properly, retaining water is a bad feature, which may cause high blood pressure.     

[lawphi]

Calid-  Where you ever on a daily dose of steroids with your first transplant? 

Prednisone is the devil and I would love to see it ditched from my husband's "menu".  However, he was transplanted in the early 1990s when steroid free transplants were not performed at his center.  He also received a cadaver kidney verses a living donor.

I was a bit surprised to find out that my recipient is on steroids.  I am pretty sure this is his first transplant at a center I assumed would be steroid free. 

[cariad]

I think in terms of feeling hot in the SoCal sun, that could well be a problem regardless of what your cousin weighs. I felt that prednisone interfered with my system's internal temperature control - I would get hot very easily. Aside from some weight gain, which was blown up into the biggest deal in the universe at my house, I have managed to (so far) avoid the major issues of longterm steroid use. True, once I went hardcore anorexic, I felt cold all the time, but today I weigh in what is considered a "normal" range, but yet again the transplant seems to have interfered with my internal temperature. I get chills and heat flashes. I know it's not a weight issue with me.

People (in general, not referring to anyone here) love to have answers to these things, love to attribute any sort of success - medical or otherwise - to virtuous behaviour, and struggles to bad behaviour. That irritates me, and I have less patience with that attitude every moment that ticks by. I was treated like a goddam criminal for eating, when it seems that the entire world knows that steroids do this to people. It is not the eating! I was put on a ridiculously strict, 1000 calorie per day diet and doctors and control freakish laypeople still got on me for my weight. Think of the mental health I might have enjoyed if they had actually used some of that medical training of theirs to say to themselves "Hmmmm - is everything always the patient's fault?"

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.

[RichardMEL]

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 I get where you're coming from here. For me I feel I understand what the effect of the steroids (and other meds) are and I realise there's only so much I can do physically about it. I don't just exercise to counter that - I do it for general health now that I have my tx it's more important than ever(I was doing a lot of walking while on D too to try and keep my cardio system in reasonable shape for when the op came). So I exercise for general health, but it is also part of it to try to keep the weight gain at bay (and I have, more or less). I try to not stress too much about not being able to bring it down much though because I think this is just the way it is for my body under the corrent regimen. The good thing is that I'm not putting on and turning into Homer Simpson (with the point being the increased potential for diabetes ). Heck I feel good about it too Yes, I have changed my diet a bit to also help, but by the same token I am also trying to enjoy life as much as I can with my gift - isn't that half the point of it? I don't know how long it will last for, and while I don't want to be doing anything foolish to cause problems, I also want to be able enjoy all life has to offer. So yes, I will enjoy that bit extra ice cream and chocolate fudge damnit!!! 

[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 I get where you're coming from here. For me I feel I understand what the effect of the steroids (and other meds) are and I realise there's only so much I can do physically about it. I don't just exercise to counter that - I do it for general health now that I have my tx it's more important than ever(I was doing a lot of walking while on D too to try and keep my cardio system in reasonable shape for when the op came). So I exercise for general health, but it is also part of it to try to keep the weight gain at bay (and I have, more or less). I try to not stress too much about not being able to bring it down much though because I think this is just the way it is for my body under the corrent regimen. The good thing is that I'm not putting on and turning into Homer Simpson (with the point being the increased potential for diabetes ). Heck I feel good about it too Yes, I have changed my diet a bit to also help, but by the same token I am also trying to enjoy life as much as I can with my gift - isn't that half the point of it? I don't know how long it will last for, and while I don't want to be doing anything foolish to cause problems, I also want to be able enjoy all life has to offer. So yes, I will enjoy that bit extra ice cream and chocolate fudge damnit!!! 

Right on, Richard!

(Oh, and I meant to write that it makes me sad to see patients tell themselves that it is ALL about diet and exercise. Obviously, diet and exercise will have some impact if it is important to a person to lose weight. Enjoyable exercise is one of the most superb ways to spend one's free time, for the many reasons that you listed, weight loss being only one possible byproduct of getting out, moving around, having fun.)

[RichardMEL]

Really I do it because the baby swans I see at the lake I walk around are SOOOO CUTE!!!!!!