Transplant patients/Prednisolone takers?

Options
Hi, I'm 25 and have had a kidney transplant. I've been only Prednisolone since I was 21. It has caused me to gain 40kgs in a very short time and over the last 2 years I have struggled to get any of it off, let alone stop putting more weight on.
I'm hoping calorie counting will really help, and it's only been 1 week but so far I've lost 3kgs.

Is there anyone else out there who is on Prednisolone or has had a transplant and are in a similar situation?

I hope to hear from you! :)

Replies

  • rknrvt
    Options
    I too am on steroids about 6 months a year, and it's not easy keeping your weight in check. I'm absolutely starving on my meds, and I'm 50 on top of it! We probably won't lose as fast as other people, but that's ok!
  • emsicle_o
    emsicle_o Posts: 162 Member
    Options
    Unfortunately it's the nature of the med. It does really puff you out. My boyfriend was nearly 15 stone when he was taking it. He was weaned off of prednisolone last year and onto azothiaprime. He's now just under 12 stone.
  • sar87g
    Options
    Thanks for the reply ladies :)
    I can't get weined off mine because it's the only drug of its type for immuno-suppressant anti rejection drugs at the moment :( I asked my specialist if that is likely to change in the near future and he said its not likely.

    BUT, I'm in week 2 now and I weigh in tomorrow and I'm really excited! I have felt hungry a couple of times through the week, but I've been making much healthier choices. I haven't broken yet, doing really well!

    I hope you ladies are as well :) x
  • Embooya
    Embooya Posts: 222 Member
    Options
    I got really sick a couple months ago with Bronchitis and they put me on prednisolone I got really swollen from it and undoubtedly put on about 5 pounds or so, just recently got off of it and I still dont feel right. It helped with my breathing but it also supercharged my appetite. I started working out again just as I got sick and my original plan was to drop weight and get a bit leaner now i've gone in the complete opposite direction putting on 15 pounds the last two months and eating 3500-4000 calories a day. DAMN YOU PREDNISOLONE, DAMN YOU !!!
  • Just_Aid
    Options
    I'm currently on a double transplant list, Kidney & pancreas

    3Kg's in a week is a good start, :happy: :happy: :happy:

    This site will help a lot
  • Cherp18
    Cherp18 Posts: 224 Member
    Options
    Hi, I was on Prednisone & CellCept for years.. I gained 30 lbs easy over the years but when I started walking and watching my food intake it really worked. It's slower to lose & I was hungry "all the time" (maybe my dose??) but my doc said "eat carrot sticks" (which meant less food) and I tried! I did lose the weight, just slowly.

    Good luck with everything! You can do it!
  • Cherp18
    Cherp18 Posts: 224 Member
    Options
    OOPS! Double post ........... please ignore
  • catcrazy
    catcrazy Posts: 1,740 Member
    Options
    I'm on constant low dose and a high dose every 4-6 weeks and yes, its a pig. Weight loss is harder, not just because of the gnaw your arm off hunger either, it seems to mess with everything. Water retention is a HUGE one for me, and although I know its not fat when you've gain 11lbs in a day it shows...the only good point there is you can also pee away 11lbs in a day (done that!)



    Best advice I can give is just keep plugging away, dont get disheartened if you lose slower than others or stall more often.
  • sar87g
    sar87g Posts: 11
    Options
    Wow, thanks everyone :)

    This helps me feel much less alone, because I personally don't know anyone else on all these crazy anti-rejection meds.
    It seems we all get that puffy "moon face", bloated belly and whopper amount of neck fat though!

    To those people that have lost weight while being on Prednisolone, does the puffiness in your face come down too?
    Not recognising my own face in the mirror or photos is one thing that really gets me.

    Keep on going everyone, I had a slow week this week but still dropped some weight, we can do it !
  • sar87g
    sar87g Posts: 11
    Options
    I'm currently on a double transplant list, Kidney & pancreas

    3Kg's in a week is a good start, :happy: :happy: :happy:

    This site will help a lot

    I so hope you get your transplants soon!!!! Diabetic?
  • SinomenJen
    SinomenJen Posts: 262 Member
    Options
    new here myself this is my first post, but i have COPD and go on and off prednisone like candy!
  • kristenblankenship98
    Options
    I am a 2 time Kidney transplant paitent and on constant Prednisone, my doc says he will not take me off ever.. I am back down to 5 mg matienence dose . My weight has yo yoed over the years and you can usally track if I was on a high or low dose at those times. Now that I am on a low dose I am trying my hardest to get this weight off.
  • professorRAT
    professorRAT Posts: 690 Member
    Options
    I go on and off for years at a time for my autoimmune liver disease. I was on last time for almost 4 years, but was able to come off about 6 months ago. Counting calories will help you for sure! If you can learn to eat what you know you need rather than eat because you are hungry, then you will do well. As we all know, on prednisone you are ALWAYS hungry!!!

    I was on 10mg for 3 plus years on may last run with prednisone and I felt my face was puffy the entire time, but I think I noticed it more than anyone else.

    Good luck and just keep tracking your calories. It really will help.
  • Aymzc
    Aymzc Posts: 159 Member
    Options
    Hi

    I'm a kidney transplant patient received mine from my mum nearly 3 years ago. I take prednisolone,cellcept and prograf. I gotmoon face from the steroids and I get bloated belly too. I'm trying o keep my weight down so I'm healthier and my kidney can keep performing as well as it has.
    Happy to accept friend req from anyone pre/post transplant for chat and suport

    Amy
  • KimLoan325
    Options
    Hi, all - Living Kidney Donor here - would love to add some friends to support! I'm very close to my recipient and understand the additional considerations you have with meds and diet.

    My metabolism changed radically, post-op (09/09) and I think it would be very interesting to team up. For all kidney and transplant patients, I'm rooting for you and cheering on your good health.

    :drinker: <====== Me, hydrating.
  • effcla
    effcla Posts: 33 Member
    Options
    First, congratulations to all you transplant patients and donors. I am also 3 years post-transplant (kidney) and received my kidney from my brother. KimLoan325, you are a special person to donate your kidney. I thank you from the bottom of my heart.

    Now, on to the topic at hand. I am on tacrolimus and cellcept but only had to take prednisone for the 5 days I was in the hospital post-transplant so I'm lucky there but gained 40 lbs from the time I was diagnosed as near kidney failure to the time I received the transplant (about 3 years). I carried that extra weight around for another 2+ years and finally had enough.

    I couldn't stomach another round of Weight Watchers (although it's a good program and lots of people have great success) so decided to try MFP. I've lost 28 lbs and have another 4 to go to my goal weight. Food restrictions from the transplant as well as drug side effects have made this an interesting journey but I'm glad I stuck to it.

    I figure it's enough for my body to have to contend with what it considers a foreign object and taking drugs to keep it from rejecting, lugging around extra weight wasn't fair.

    You all keep it up. It is well worth the effort to treat ourselves better. And for the lady waiting for her kidney/pancreas transplant, I will keep you in my thoughts and prayers. :-)
  • MissyINGa
    MissyINGa Posts: 55 Member
    Options
    This is a wonderful post!!! Thank you so much for starting it. I am a mother of a 9 year old that has a kidney transplant and understand the daily struggles that you all face. I would love to add you all not only for encouragement for myself but also to keep up with how a transplant effects your life. He got his transplant at 2 yrs old and is currently under weight for his age and we are trying to add calories to his diet. I struggle with preparing his food when I am constantly trying to watch what I eat.

    I agree, KimLoan325 you are an angel!!! My brother was my son's donor and I am thankful everyday for what he did for my son and our family. He has changed our lives forever just as you have done for someone.

    Good luck to you all!!