My goal right now is to try and get some of this prednisone weight off. Many days I look like I am 6 months pregnant!!!! I don't know if I can, still being on it at 10mg. And some times I am still getting high dose iv depending on how I am doing. Sometimes they have to knock me with a day or two of high iv steroids.
What are some things I can do? We are trying to go gluten free and as well. I am trying to drink more and watch what I am eating. I had lost 30 pounds when I first got sick and was keeping it off until they put me on steroids and then it all came back. Have to love those steroids NOT! I have a hard to exercising as a simple walk down the hall or into an appointment makes me short of breath and cause extreme chest pain. My mom just got a travel job and where we will be staying has a pool so I will be able to do that some days. I am just stuck at what I can do.....
I’m sure everyone will have lots of ideas but I try and watch what I eat (which doesn’t always work!) and I try and have small walks. At first I couldn’t walk for long at all now I can wander for 40 minutes. Also I got some secondhand gym equipment and my aim is just to do 5 mins at first on my good days…oh and there’s an iPhone ap called shape up that records food and exercise…and that keeps me honest! But I have to remember to fill it in…good luck!
I completely understand. I’ve put on a lot of weight from being on high dose prednisone over the last ten plus years. I made a resolution to get moving. Even if it’s the smallest thing for a short amount of time. I understand not being able to do very much. Just do what you can. I’ve read gluten-free diets are good for us with lupus. A low carb diet is what I’m trying to follow for the most part. I have to try to be aware that I’m not consuming more than I’m burning. I don’t know if this is helpful. I hope it is. Feel free to email me anytime. Kim
I would add if you can change your eating permanently to this type of diet it has many great results. I’m working on that now and soon as I eat outside of that regiment I find my lupus symptoms go crazy. Hope you like your results
Yes! Prednisone makes you gain lots of weight & makes you have a great big appetite…I had been in prednisone for over 12 years,My doctor just recently took me off 6 months ago…I lost weight dramaticly…I believe I lost about 55 pounds since I been off of prednisone…since I been off of it I develop other problems…I just hope for a cure for us all Lupians
I have been on prednisone for way too long. When I gained 55 lbs. and developed a new disease called Cushings disease which is caused by cortisone. As far as I know there is no cure, it’s artificial fat. If anyone knows or discovers a cure I would love to know. Every suggestion is helpful so try them all!
I gained a lot of weight in prednisone. I have taken every day for two years. My doctor put me on a cooked vegetarian diet. I lost thirty pounds in two months. It is so worth it.
i am glad you are trying to do something good for yourself! I did try the gluten free and did not seem to help me at all. But i encourage people to try any kind of healthy died that they think will help.
I rarely have used pred pills since my early thirties due the severe side effects. When i flare, it is very hard to breathe and get tired often taking few steps to go to the bathroom. From women who had more experience than I when i first attend support groups, this was normal, just part of it. Of course, tell your doctor about shortness of breath and have them check it out. I can get pleurisy like many but so far heart is okay.
I get that there are times when we must use them depending how our bodies are attacked. Just try and use as least as possible. I can say this that weight can come off steadily if you stick to just watching what you eat...drink lots of water healthy fluids to keep flushing your body. It can take over 6 months to get a shot of steroids out so imagine how long a lot of it on long term( more than few weeks).
I wish you the best on trying to get healthier this year ..swimming is great but you will get tired even doing it. Just go slow and do not push yourself too hard as you can make yourself get sick all over again.
I am really proud you are trying to do what is best for you even if it is hard....takes courage but in long run, you will be so much happier, less pain and feel better all around! good luck on your voyage to health!
I am just glad that you are presenting to people about staying on it too long(more than few weeks) and here is just one of many serious side effects. I do not think there is cure but treatments. I know i was tested for it years ago. I am so sorry, you might as the doctor who put you on pred pills so long why they did.....i get there are times when it is their only option. But if it is just for the average flare, that doctor did not do right by you.
I do know people with it and are having a decent good life!! so hope that helps...just one more thing i know! good luck and again thanks for letting others know about serious side effects of steroids. Phoenix said:
I have been on prednisone for way too long. When I gained 55 lbs. and developed a new disease called Cushings disease which is caused by cortisone. As far as I know there is no cure, it's artificial fat. If anyone knows or discovers a cure I would love to know. Every suggestion is helpful so try them all!
Cushing's syndrome is a side effect of the prednisone - not only do you have weight gain but the fat typically deposits in your midsection and across your shoulders in addition to the moon facies- if and when you can get off steroids it all goes away along with your weight loss Even if you can lose weight while on steroids you still keep the fat deposits as long as your are receiving the prednisone Cushings basically is too much steroids Addison's is not enough- both have dire consequences :>(
thank you all for all the great tips and encouragement! I too have the cushings syndrome and because of that the doctors are trying there best to get me off of it. I hope when I get off I loose the weight, and roundness. Anxious to see how it all goes.....
Hello I am sorry you are having to go through this. Prednisone is such an ugly drug , and it can do crazy things to our body and mind. Curious our you just new to Lupus only reason I ask is I was on those amounts of the drug for the first couple of months of being dx., to regulate my pain until Plaquial was in my system . But with me prednisone did not make me gain weight ,but I have a friend that just blow up ,she really look like a different person, but the good thing a month after being off it she slimmed down to regular size, hopefully this is a positive for maybe a little piece of mind. With me prednisone does way on my mind , because when I am on it ,my mind goes insane that how I feel because it makes me manic and so I go for days of not being able to sleep I can't stop talking moving I do go to the gym ever day and there's know problem workout for 5 hours,then having to make myself stop , but what do you do when there is no other drug that can help you . So as of today I just been off it for 4 days and so for 2 days I have been manic those days and I have at least month till I settle down sometimes it will take two and end up in mental hospital until I come down. So with the voice of both of us and others maybe we can figure something out or learn something . Hope you start feeling better.
Thank You! I was just diagnosed in May and started Prednisone in June. Originally just for my kidneys but they decided it was best to keep me on them. They are hoping to try methotrexate to get me off the prednisone. It is one nasty drug for sure!!!
chelle said:
Hello I am sorry you are having to go through this. Prednisone is such an ugly drug , and it can do crazy things to our body and mind. Curious our you just new to Lupus only reason I ask is I was on those amounts of the drug for the first couple of months of being dx., to regulate my pain until Plaquial was in my system . But with me prednisone did not make me gain weight ,but I have a friend that just blow up ,she really look like a different person, but the good thing a month after being off it she slimmed down to regular size, hopefully this is a positive for maybe a little piece of mind. With me prednisone does way on my mind , because when I am on it ,my mind goes insane that how I feel because it makes me manic and so I go for days of not being able to sleep I can't stop talking moving I do go to the gym ever day and there's know problem workout for 5 hours,then having to make myself stop , but what do you do when there is no other drug that can help you . So as of today I just been off it for 4 days and so for 2 days I have been manic those days and I have at least month till I settle down sometimes it will take two and end up in mental hospital until I come down. So with the voice of both of us and others maybe we can figure something out or learn something . Hope you start feeling better.
Hello I am new to this support group and dx with SLE, etc. But I have been on high dose prednisone for more than two years and did not gain much weight. Now I am down to 5mg a day. Are you saying that I will have more side effects when I finally come off the drug since I have been on it so long? I have noticed that I stay up to 3am most nites easily without a nap during the day. It's like I can't get my mind to calm down.
I know what you mean… I’ve put on 34lbs in the last three months because of Prednisone. I’ve added a few cardio classes to my weekly schedule. I’ve also added more fruits and veggies to my diet. I’m hoping that it will help and I will start to lose the weight. I’m also tapering so I hope that will help also.