I cannot stop gaining weight! Help

[Norken]

I am 2 1/2 years post kidney transplant. Before the transplant, I was extremely healthy and fit, ate all the right foods, (nothing processed), worked out daily, was a regular bike rider and hiker, etc. After my transplant, I went through 2 grueling years of rejection treatments which included lots of medical procedures, and regular visits to the infusion center. Thankfully, my kidney is finally settling in and not in rejection. I am still on the strongest doses of meds and of course the dreaded prednisone. I am slowly gaining my strength back (nothing like it was pre-transplant). Now I am battling the weight gain. I am not overeating, or eating sweets, carbs, etc. I can write a nutrition book I am so in tuned with proper food to eat. I drink plenty of water, no sodas or juices, and mainly eat veggies and chicken. I tried weight watchers (and gained), noom (and gained), keto (and gained), intermittent fasting (and gained), and DASH (which was a complete failure). My husband has lost 30 lbs and my son 40 lbs (they eat what I cook). For me, however, it's a very slow gain. .4 lbs. here, .2 lbs. there. By the end of the month it's a net gain of 1 to 2 lb. total. I work out, but nothing like I used to because I get very winded, very quickly. I have gained a total of 40 lbs in 2 1/2 years. I don't really care about how I look with the extra weight, it's more about how I feel. I hate the belly, boobs, and back fat. I'm sure if I lost weight, I would not get winded so easily too. My labs are perfect, low sugar, protein, and blood pressure. My doctors write my weight gain off to prednisone and tell me there's not much I can do about it and not to worry because the rest of my numbers are good. I can't accept that. Does anyone have any suggestions?

[PostivelyJo]

Ask about reducing prednisolone . I am tapering mine. It’s often one of the 3 drugs in transplant protocol and perhaps the one that it is safe to question. It’s taken me nearly 3 years to get the green light to come off it. It comes with risks , just as taking it does …

Well done by the way …

[Daijb]

Hi. As the other poster said, it will be the prednisolone. My wife has the same problem. Try to get it down to the lowest agreed level or swapped with another immunosuppressant.

[PostivelyJo in reply to Daijb]

I do think it’s important that we question the use of Prednisoline if we feel it’s a problem. I get the feeling and I may be wrong that Prednisolone can be in many cases an extra safety net, one that if we listen carefully to our bodies and take responsibility for , that we can either reduce massively or in some cases do without. But I also understand that the doctors have a body of experience and research that they respond to too. I have huge respect for my medical team and wouldn’t ever do something without advice. Feeling well can give one a false sense of security and I’m not fully informed on my match , but I believe there is a delicate balance between medicalised and over medicalised … a mind body thing that is different in each of us. …

[Eyak1971 in reply to PostivelyJo]

Totally agree. Wish my doctor had spent more time preparing me for the side effects of antirejection medication while I was preparing for a transplant so I could be more prepared. I would have appreciated it so I could realize what I was getting into. All doctors should recommend this forum to prepare patients. Transplantation is great but it is not so great for some people. It can extend your life but it does have some downsides. It's like your birthday - some presents are just what you wanted, some not. But you still want to celebrate the day.

[horsie63 in reply to Eyak1971]

I'm just starting this journey and I appreciate all that others have gone through as I'm compiling a list of questions/comments.

[blackkat2]

Ugh, I so feel your pain. On top of the issues you describe, I developed diabetes after my transplant (NODAT), thanks to the the tacro and myfortic. And all the diabetes meds cause weight gain, too. It's a constant battle. I got off prednisone within the first year (I'm in year 5 now) after transplant, though I never had the rejection issues you've had. For me, quitting prednisone didn't solve the weight issues (though it did give me osteoporosis from just the short time I was on it). I wish I had something to help you, but I do really feel your pain.

[redpanda67]

Sorry, my posts are always long winded. Skip to the last paragraph for my advice.

Yes, many of us have had this same problem. When I had my transplant I was 20 lbs underweight, and I quickly gained that and more by the end of my first year. I am now up almost 60 lbs from when I had my transplant. Unfortunately, once people are on prednisone they rarely come off. This is in part experience from the doctors when they have tried to take people off prednisone they didn't do too well. That doesn't mean people haven't been successful, but in most cases, it's not worth the risk. The other option to lower your dose does help, but only to some extent. Like you, I am also very knowledgeable about nutrition and metabolism. I am a researcher in the field of metabolism investigating kidney/liver diseases.

Prednisone gets the bad rap because everyone knows what happens when you take it in large doses. For the most part transplant patients take a very low dose, and although this does contribute to the problem it is not by far the only drug that changes your appetite and food processing response in your body. Calceunirn inhibitors, mTOR inhibitors, and even CellCept can play a small but important role in changing your metabolism, and not for the better. Prednisone doesn't make you gain weight it makes you hungry and it increases the amount of sugar your liver sends into your bloodstream. It also influences how your muscles metabolize energy, and how your body stores fat. Your other immunosuppressants contribute to these changes as well, but with a much smaller impact. Unfortunately for us what really happens is your resting metabolic rate begins to change because we lose muscle mass and the fat cells in our body have a constant supply of sugar and insulin telling them to store fat.

As I have also been told a million times not to focus on the number on the scale. More importantly is to continue to monitor your blood glucose, blood pressure, and overall health. I also get annoyed with this because I honestly feel like it just makes me depressed and unwilling to exercise and eat better. I have been able to lose weight in the past. It has taken a lot of dedication and planning. Ultimately for me, it came down to flipping out my carbs for more fat and protein. This is NOT KETO, this is simply changing highly processed simple carbs for more complex carbs and trying to cut back on starchy veggies.

I also had to increase my exercise beyond what I used to do in the past. This means increasing the intensity and duration. Most importantly I know from my own experience that weight training is absolutely key. I had a personal training for several months and managed to build up some muscle mass and lose 15 pounds. I stop training for a week and lost half of the gains that took me months to get. When I returned to the gym I had to drop my weights and reps down to almost where I started.

So my advice would be this. Find the right combination of foods that make you not hungry, give you energy, and provide your body with nutrients. Monitor how much you eat as opposed to what you eat, I can eat a bag of pears in one day if I don't pay attention. Recognize you are no longer the person you were before your transplant, and that is a good thing, because you have a functioning kidney, but it also comes at a price. If you haven't yet, try focusing on weight training and stretching. I found once I was in a routine and gaining muscle and flexibility I stopped focusing so much on my diet. It becomes cyclical, exercise makes me feel good and less worried about what I eat so I eat better. Because I eat better I can push my workouts more which makes me feel better overall. - I will also say I HATE exercising so it takes a huge push to get me into a routine, but once I am there it's good. One last thing about weight training, your body will take longer to recover than someone not taking immunosuppressants, so skipping a day to recover now becomes two days to recover. When I was "in the zone" I would do weight training for 45 minutes 2-3 times a week. The other 2-3 days I would swim for 45 minutes. Swimming was great because it stretched everything, didn't overwork the muscle group I had worked the day before, and gave me a great way to build my cardiovascular health.

Good luck

[forthelonghaul in reply to redpanda67]

THANK YOU for the very informative “long winded” post.!

[WYOAnne NKF Ambassador]

Unfortunately, you are not the only one that has gained weight following a transplant. I think it is in partly due to the immunosuppressants, including the Prednisone. You are feeling well so you eat more and can eat anything you want.

I started by walking everyday . Start out slowly and work up to walking 30 minutes a day.

If you are concerned, you could also talk with your nephrologist office and get a referral to see a dietician.

[chicago17]

I'm 4yrs post transplant this Yr in December I was on prednisone 3 a day at first then it was slowly reduced to 1 every other day .I've never had an issue with my weight but saying that I've only been small all my life . It sounds like it's the steroids which unfortunately are part of the meds we have to take maybe once they start to reduce them you'll see an improvement. I wish you all the best 👍🏼

[peregrin]

The analysis of Drs. Knight and Morris of the Centre for Evidence in Transplantation suggests that late withdrawal of prednisone may increase the risk of kidney rejection, but it also increases likely life span due to decreased cardiovascular risk. Here's the link: journals.lww.com/transplant...

[Darlenia in reply to peregrin]

Good report. This kinda confirms my hubby will likely be on a small dose of prednisone for the duration of his transplant. His match fell into the average range. I think it might have been different if the match was really close. Interestingly, my hubby had a number of complications following his transplant, lost a lot of weight, then went back to his normal weight where it stays today. He's a diabetic so we're careful with food choices and exercise regularly.

[peregrin]

I've found that taking a diuretic helps with some of the weight gain

[Alkaline1]

I am 9 months post transplant they took me off anti rejection meds because of BK and doubled my prednisone since then I have gained over 70 pounds 😡 I’m told it’s the steroids I feel fine but hate having to keep buying bigger clothes that I hope I don’t have to wear to much longer I wore an 8 before transplant now I’m in a 20 that sucks but I’m above ground and I’m thankful for that if you run across anything that helps with belly fat please share and best of luck on your journey

[horsie63]

I'm wondering if having Graves Disease which causes hyperthyroidism and being small will play a role in this.

[Gizmo620]

I have the same problem-- was very thin before transplant and then boom you gain about 20 pounds or so or more --- but it is due to the meds---depending on the dosage of prednisone --but as others have replied your doctors will eventually taper down the dosage over time but I have been taking prednisone over 20 years so it is hard to deal with the weight gain-- for me i think i have increased the amount of food that i eat because the side effect of prednisone is weight gain but also its the increased appetite or what i call fake hunger--- be mindful of when you feel hungry and if its true hunger

[BabyTee]

I am 5 months post-transplant.

Not sure if you are still wondering about this. My docs tried to keep my tacrolimus level between 9 and 13 because I got both a kidney and pancreas. At 4 1/2 months I was up about 30 lbs so they told me to start doing Pilates and they removed my walking restriction from a maximum of 45 min/day. Now I have no limit on walking and no limit on pilates, except for no machines. Also, they cut my tacrolimus so it will be closer to 5 to 7.

The doc said my weight gain was for a few reasons. (1) Prednisone affects the brain so you want to keep eating, (2) tacrolimus levels above 7 or 8 tend to cause weight gain, and (3) lack of activity. I also found a number (4) and that is depression. I didn't realize I was depressed until I started exercising again. About 5 days after I increased my walking to 3 miles/day and the pilates or total gym on the lowest level and not too many reps, I realized I had been kind of depressed. I am a pretty positive person so I didn't realize it was affecting me emotionally. I think that was making me apathetic about what I was eating.

[HSP1965]

Hoi,Ik heb precies hetzelfde. Was voor de transplantatie heel slank en nu bijna 4 jaar na m'n niertransplantatie 20 kilo aangekomen maar alle bloedwaarden zijn prima.

Slik ook prednison en prograft en vind het vreselijk dat volle lijf!

Accepteren is heel lastig maar blijf proberen er is niks aan te doen.

Weet dat je een medepatient in Nederland hebt.

Samen sterk! 👊🏻