I'm on Prednisone to treat my IBD, and I hate the moonface. My doctor didn't even discuss this side effect with me, and I've gained 20 pounds in one month. I can't stand it... I'm hungry constantly. I'm a 15 year old girl and I've had to buy all new clothing. My family doesn't get it at all, I hate this.
@hotathlete2 i'm so happy for you. i've come to accept mine. i get high dose iv seriods it seems monthly over the past seven months so it will be sometime before mine comes down. when it does i will be doing a happy dance. :)
@th3don147 I'm sorry about the trembling. I suffer from trembling from time to time but it is not constant. Also, my transplant is going to be my own stem cells so no new meds will be added other than some antibiotics for the first six months. Hopefully my body will handle them ok.
@th3don147 Wow. I always start to lose the moon face at 10mg and under. It better go away this time!!!! My transplant doctor said when I go inpatient they will start knocking down the prednisone. I will go down to 15mg to begin with.
Hi, My younger sister was just prescribed an increase dosage of predisone from 15mg to 50mg. she's been on 15mg for the psat week and they just increased it to 50mg today feb.7. is that considered a very high dosage? when will the side effects show up?
@sumw12345 50 mg is a high dose. She will probably experience quickly an increase in her appetite and mood swings. It's according to how long she is on this dose if she will get the moon face, weight gain and the hump on the upper back. Hopefully she won't be on it that long.
Prednisone is a wicked drug-I understand the necessity of it but it is still just wicked. You deserve little "splurges" they are good for the soul :) xo
@Catalina031 Hopefully one day they will have a medication specifically for Lupus. Right now it has been over 40 years since a drug was approved by the FDA for lupus. All the drugs they use now to treat lupus patients is made specifically for other diseases. I've tried under my doctors care to get off of all my medications and come to find out the actual lupus is far worse than all the horrible side effects of the medications. So swollen up, unable to walk and buffalo hump it is!
Hey sweetie, I think everyone's videos are allowed to be 15 minutes now. I know mine are allowed to be over 15, but before tha every video I went to upload was allowed to be 15 minutes. You should check your upload page to see what it says.
My husband has to take prednisone for 5 days to treat his asthma. The side effects sound pretty bad, but he is so lucky to only have to take it for a short period of time. But they have him on a massive dose for a short spurt, so I wonder how it will go.
@juliagoolia72 Julia, with it being high dose over a short period of time he will probably be very grumpy, not able to sleep well and hungry as a horse. Tolerate his attitude the best you can. It will only last for the time he is on the steroid and maybe a few days past then. Hope he gets well soon. :)
@treappling1 that's what everyone says...he's been eating Christmas Cookies like they're going out of style. The sleeping hasn't been too bad, and he's been very hyper and happy not grumpy. I hope that lasts! Thanks for the info!
Just thought id drop into utoob and say hello. Having a tough time on the steroids at the moment. Even though its only 15 mg being on it long term still has its effects. The face swells up alot and im still very "out of it" lol. Still a waiting game in many ways.
@pinkelephantandmates Yes prednisone is just bad at any dose. Sometimes my swelling will start to go down at 15mg other times I have to get to 10mg to see any changes. Being at 20mg right now has me full blown cushingoid again. I am so glad your protein has lowered. That is such a good thing. I know steriods are tough. I hate when they mess with my sleep at night. The one thing I do know is that when I lower my steriods and the lupus flares the flare is far worse than the steriod side effects.
My results from the other day were good as my leak went down from 600 mls to 200 mls. I havent cut back in steroids as of yet, however I took another urin test today and if results remain steady I can then reduce the Prednisolone. So im keeping the fingers crossed.
My results from the other day were good as my leak went down from 600 mls to 200 mls. I havent cut back in steroids as of yet, however I took another urin test today and if results remain steady I can then reduce the Prednisolone. So im keeping the fingers crossed.
@pinkelephantandmates That is wonderful news!!!! I am so happy for you. I hope you get to start lowering your prednisone soon. I'm at 20mg and it looks like that is where they are going to keep me unless it has to be raised. At 20mg I still get the nasty side effects. At 15mg I don't but then the lupus is really bad.
@treappling1 Yes that is true that the effects of the steroids are still bad at 20mg, thats what im on at the moment as well, 15 mg certainly isnt symptom free, however it is alot better and it is the dosage that you begin to notice more normality. Have you heard about the new SL drug Benlysta? supposedly coming out at the end of this year. take care =]
@pinkelephantandmates I have heard of Benlysta but I don't truly understand if it will be beneficial to me. I believe it goes for the B cells which is the same as Rituxan. I seem to have good results with Rituxan. I do the Rituxan infusion every six months. I do it again in December. The side effects are a little painful for me. It feels like someone is scraping out the inside of my bones. The pain does go away though.
@treappling1 I also recieved Rituxan, in Australia we call it Rituximab but I recently had a couple of infusions of the drip. Im hoping it works well for me, apparently can take 3-4 months to show results, although I havent yet mentioned y terrific news, My protein leak went down from 200 mls again to a further 69mls!....i get to go down to 15mg prednisone. Hooraaayyyyy.
@pinkelephantandmates Congrats and happy dance!!! I know you have to be excited. I'm glad your protein is going in the right direction... down! Also, the prednisone!!! I think the Rituxan helps me more than anything. Right now I think my last infusion is wearing off. I go next month for the Rituxan again. I do two infusions 15 days apart. Then I have to wait four weeks to start the Cytoxan again. The more I take the Rituxan the less side effects I have. That's a good thing. :)
@treappling1 Has rituxan really been working well for yo?. Does it have the same side effects that prednisone does? For the last 4 months, I've been on prednisone and it worked quite well. Now I just got off of it 2 weeks ago and I flared up again. I'm considering rituxan only if it doesn't carry the negative side effect prednisone does.
@hotathlete2 Out of everything I tried I felt the most benefit from Rituxan. It does not have the same side effects of prednisone like swelling, weight gain, agitation, etc. The main thing I remember is my bones hurt because it goes after your B cells which are located in your bone marrow but after a few weeks I did feel more energy.
@treappling1 Thanks for the reply. My pemphigoid flare ups got real bad. The mouth ulcers came back, the tongue is all thrashed so my speech is impaired. There are many lesions forming on my face, chest, back and upper leg. This happened cuz I tapered off of prednisone. I'm back on 10 mgs of prednisone and I'm on a new drug called azathioprine. I just started azathioprine last friday. I understand that it takes weeks to show any benefit. I'm not loving life at all.
Thanks for replying =]..feels nice to talk to someone with lupus. I see my doc again in a couple of weeks, its my nephrotic syndrome aprt of the disease which is being annoying at the moment, leaking wayyy too much protein. The average person leaks about 20 mls and im leaking 600 mls lmao. So if thigns improve there within a couple of weeks hopefully my doc can reduce the steroid treatment even slightly!. Hang in there
@pinkelephantandmates Wow that's alot of protien! I have been very fortunate as my kidneys have never been involved. I have horrible problems with urinary tract infections and some kidney infections but no leaking of protiens and such. Are you on any other kind of med like Cellcept for your kidneys. Cellcept is considered a steriod sparing drug meaning it can take the place of steriods so you can lower your prednisone and there will still be a drug doing what it needs to do for your kidneys.
@treappling1 Yeah im taking cellcept, currently 6 pills at the moment, 3 in the morn 3 at night. Its because of my recent flare shown by a kidney biopsy which resulted in upping the steroid dosage. The plan my doc has me on is a relatively quick (but not too quick) taper process. But its too risky to do any tapering at all while the leaking is still bad.
@pinkelephantandmates Please keep me posted on how you are doing. I tried tapering off of prednisone for the last year and it was 1mg every 4-6 weeks. I only made it down to 10mg then the lupus flare was just to much and I am at 20mg. I hope your kidneys are doing better.
Im having abit of a tough time currently on the steroids, I feel so out of it, when I even look around the room its like im on another planet, do you get this with prednisone? I greatly miss the normal feeling I had when I was on a lower dose. I see my doc Friday so im really hoping for improvement in the protein leak. Its very frustrating because my kidney function is normal currently, nephrotic syndrome can be 1 tough bugger to throw off.
@pinkelephantandmates I did have that feeling when on high doses of steriods. My doctor called it a feeling of disconnect. It went away as my doses were lowered. Let me know what you find out on Friday. I'm not feeling to well after this last cytoxan infusion. I can barely get my head up off the pillow. I don't know whether to push myself or to rest... who knows!
Hey =] Im a 19 year old Male from Australia and I was diagnosed with Lupus at 17. Your very brave to put this video up. Believe me I know how tough it is to show your face while being on a high dose of steroid treatment. I went through a 12 month spell of agony, slowly weaning off Prednisone. I got down to 5mg and got my normal face back, but I had a relapse and am back on 20 mg at the moment and my Doc is working her way on getting me back to a smaller dose. Hang in there! your a legend.
@pinkelephantandmates Oh I hate to see you kids suffer with lupus. You're the legend! I now know I had it basically all of my life but was never diagnosed until 2004ish. Yes, it took alot of me going back and forth before I finally just said what the heck and I put my nice round face on YouTube for the whole world to see!! The moon face has to be the worse. I hope your titrating down goes easy for you. Mine hasn't been so I'm back up to 20 mg. I was down to 10mg. Keep me posted.
@Avatar2050 I did and for me it was a big mistake. I ended up in the hospital. Definitely check with your doctor before you take any additional medicines or supplements. Also, know that lupus is an over active immune system. We do not want to boost our immune system because it is already over active. Just keep that in mind.
@treappling1 -interesting.... i just had a test for it as i had a butterfly rash, turned out neg thankfully.. my immune sys is very depleted thats the problem..
so its like the cytokine storm then, immune system attacks itself..?
@Avatar2050 I'm not familiar with the cytokine storm. Lupus is an autoimmune disease where the immune system is overactive and it attacks our organs. Also, lupus cannot be diagnosed by a blood test. It is diagnosed based upon your medical history and symptoms. There are blood tests that can be positive with lupus but they do not mean that you have lupus and vice versa.
@treappling1 - thats funny cos the doctors here in australia seem to think its detectable in an antinuclear antibodies screen that ive just had..! oh well doctors are totally naive and do not even think that nutrition affects health.. they are basically all drug pushers..
@Avatar2050 From what I understand there is alot of misunderstanding regarding the ANA titer (antinuclear antibodies). A positive result does not mean you have lupus. You can have a positive ANA and be lupus free OR you can have a negative ANA result and have lupus.
Thanks for making these videos, I think its really hard to put this up, but also its an amazing thing to do...
Im studying medicine, and now I´m researching about prednisone and I think that the most important part is to see how people feel and how their life is affected by this drug...
@sebastas2 Yeah for researching!!!! If you have any questions to ask me as a patient I would be more than happy to answer them. Thank you for the encouragement. Prednisone is your best worst enemy. The side effects are horrible but it does its job. I also have adrenal insufficiency due to the steriod treatment.
I have in the past went off of the medications and found out that the disease is so much worse than the side effects of the medicines. It is so hard to beleive but it is worse than going through chemo and the list of the other meds that I take on top of the chemo. We need help and fast.
My daughter has lupus and she gained weight but the doctors want her to lose alot even though she can't move much.
clown71075 2 weeks ago
how do i subscribe to you? fallen1171@live.com ( allegra)
fallen1171 3 weeks ago
I'm on Prednisone to treat my IBD, and I hate the moonface. My doctor didn't even discuss this side effect with me, and I've gained 20 pounds in one month. I can't stand it... I'm hungry constantly. I'm a 15 year old girl and I've had to buy all new clothing. My family doesn't get it at all, I hate this.
luvlizzieful 3 weeks ago
@treappling On a positive note, my moonface finally came down, yay.
hotathlete2 3 months ago
@hotathlete2 i'm so happy for you. i've come to accept mine. i get high dose iv seriods it seems monthly over the past seven months so it will be sometime before mine comes down. when it does i will be doing a happy dance. :)
treappling1 3 months ago
@th3don147 I'm sorry about the trembling. I suffer from trembling from time to time but it is not constant. Also, my transplant is going to be my own stem cells so no new meds will be added other than some antibiotics for the first six months. Hopefully my body will handle them ok.
treappling1 1 year ago
@th3don147 Wow. I always start to lose the moon face at 10mg and under. It better go away this time!!!! My transplant doctor said when I go inpatient they will start knocking down the prednisone. I will go down to 15mg to begin with.
treappling1 1 year ago
Hi, My younger sister was just prescribed an increase dosage of predisone from 15mg to 50mg. she's been on 15mg for the psat week and they just increased it to 50mg today feb.7. is that considered a very high dosage? when will the side effects show up?
sumw12345 1 year ago
@sumw12345 50 mg is a high dose. She will probably experience quickly an increase in her appetite and mood swings. It's according to how long she is on this dose if she will get the moon face, weight gain and the hump on the upper back. Hopefully she won't be on it that long.
treappling1 1 year ago
Prednisone is a wicked drug-I understand the necessity of it but it is still just wicked. You deserve little "splurges" they are good for the soul :) xo
Catalina031 1 year ago
@Catalina031 Hopefully one day they will have a medication specifically for Lupus. Right now it has been over 40 years since a drug was approved by the FDA for lupus. All the drugs they use now to treat lupus patients is made specifically for other diseases. I've tried under my doctors care to get off of all my medications and come to find out the actual lupus is far worse than all the horrible side effects of the medications. So swollen up, unable to walk and buffalo hump it is!
treappling1 1 year ago
Hey sweetie, I think everyone's videos are allowed to be 15 minutes now. I know mine are allowed to be over 15, but before tha every video I went to upload was allowed to be 15 minutes. You should check your upload page to see what it says.
My husband has to take prednisone for 5 days to treat his asthma. The side effects sound pretty bad, but he is so lucky to only have to take it for a short period of time. But they have him on a massive dose for a short spurt, so I wonder how it will go.
juliagoolia72 1 year ago
@juliagoolia72 Julia, with it being high dose over a short period of time he will probably be very grumpy, not able to sleep well and hungry as a horse. Tolerate his attitude the best you can. It will only last for the time he is on the steroid and maybe a few days past then. Hope he gets well soon. :)
treappling1 1 year ago
@treappling1 that's what everyone says...he's been eating Christmas Cookies like they're going out of style. The sleeping hasn't been too bad, and he's been very hyper and happy not grumpy. I hope that lasts! Thanks for the info!
juliagoolia72 1 year ago
Hey =]
Just thought id drop into utoob and say hello. Having a tough time on the steroids at the moment. Even though its only 15 mg being on it long term still has its effects. The face swells up alot and im still very "out of it" lol. Still a waiting game in many ways.
pinkelephantandmates 1 year ago
@pinkelephantandmates Yes prednisone is just bad at any dose. Sometimes my swelling will start to go down at 15mg other times I have to get to 10mg to see any changes. Being at 20mg right now has me full blown cushingoid again. I am so glad your protein has lowered. That is such a good thing. I know steriods are tough. I hate when they mess with my sleep at night. The one thing I do know is that when I lower my steriods and the lupus flares the flare is far worse than the steriod side effects.
treappling1 1 year ago
Hey Treappling =D.
My results from the other day were good as my leak went down from 600 mls to 200 mls. I havent cut back in steroids as of yet, however I took another urin test today and if results remain steady I can then reduce the Prednisolone. So im keeping the fingers crossed.
pinkelephantandmates 1 year ago
Hey Treappling =D.
My results from the other day were good as my leak went down from 600 mls to 200 mls. I havent cut back in steroids as of yet, however I took another urin test today and if results remain steady I can then reduce the Prednisolone. So im keeping the fingers crossed.
pinkelephantandmates 1 year ago
@pinkelephantandmates That is wonderful news!!!! I am so happy for you. I hope you get to start lowering your prednisone soon. I'm at 20mg and it looks like that is where they are going to keep me unless it has to be raised. At 20mg I still get the nasty side effects. At 15mg I don't but then the lupus is really bad.
treappling1 1 year ago
@treappling1 Yes that is true that the effects of the steroids are still bad at 20mg, thats what im on at the moment as well, 15 mg certainly isnt symptom free, however it is alot better and it is the dosage that you begin to notice more normality. Have you heard about the new SL drug Benlysta? supposedly coming out at the end of this year. take care =]
pinkelephantandmates 1 year ago
@pinkelephantandmates I have heard of Benlysta but I don't truly understand if it will be beneficial to me. I believe it goes for the B cells which is the same as Rituxan. I seem to have good results with Rituxan. I do the Rituxan infusion every six months. I do it again in December. The side effects are a little painful for me. It feels like someone is scraping out the inside of my bones. The pain does go away though.
treappling1 1 year ago
@treappling1 I also recieved Rituxan, in Australia we call it Rituximab but I recently had a couple of infusions of the drip. Im hoping it works well for me, apparently can take 3-4 months to show results, although I havent yet mentioned y terrific news, My protein leak went down from 200 mls again to a further 69mls!....i get to go down to 15mg prednisone. Hooraaayyyyy.
pinkelephantandmates 1 year ago
@pinkelephantandmates Congrats and happy dance!!! I know you have to be excited. I'm glad your protein is going in the right direction... down! Also, the prednisone!!! I think the Rituxan helps me more than anything. Right now I think my last infusion is wearing off. I go next month for the Rituxan again. I do two infusions 15 days apart. Then I have to wait four weeks to start the Cytoxan again. The more I take the Rituxan the less side effects I have. That's a good thing. :)
treappling1 1 year ago
@treappling1 Has rituxan really been working well for yo?. Does it have the same side effects that prednisone does? For the last 4 months, I've been on prednisone and it worked quite well. Now I just got off of it 2 weeks ago and I flared up again. I'm considering rituxan only if it doesn't carry the negative side effect prednisone does.
hotathlete2 4 months ago
@hotathlete2 Out of everything I tried I felt the most benefit from Rituxan. It does not have the same side effects of prednisone like swelling, weight gain, agitation, etc. The main thing I remember is my bones hurt because it goes after your B cells which are located in your bone marrow but after a few weeks I did feel more energy.
treappling1 3 months ago
@treappling1 Thanks for the reply. My pemphigoid flare ups got real bad. The mouth ulcers came back, the tongue is all thrashed so my speech is impaired. There are many lesions forming on my face, chest, back and upper leg. This happened cuz I tapered off of prednisone. I'm back on 10 mgs of prednisone and I'm on a new drug called azathioprine. I just started azathioprine last friday. I understand that it takes weeks to show any benefit. I'm not loving life at all.
hotathlete2 3 months ago
Thanks for replying =]..feels nice to talk to someone with lupus. I see my doc again in a couple of weeks, its my nephrotic syndrome aprt of the disease which is being annoying at the moment, leaking wayyy too much protein. The average person leaks about 20 mls and im leaking 600 mls lmao. So if thigns improve there within a couple of weeks hopefully my doc can reduce the steroid treatment even slightly!. Hang in there
pinkelephantandmates 1 year ago
@pinkelephantandmates Wow that's alot of protien! I have been very fortunate as my kidneys have never been involved. I have horrible problems with urinary tract infections and some kidney infections but no leaking of protiens and such. Are you on any other kind of med like Cellcept for your kidneys. Cellcept is considered a steriod sparing drug meaning it can take the place of steriods so you can lower your prednisone and there will still be a drug doing what it needs to do for your kidneys.
treappling1 1 year ago
@treappling1 Yeah im taking cellcept, currently 6 pills at the moment, 3 in the morn 3 at night. Its because of my recent flare shown by a kidney biopsy which resulted in upping the steroid dosage. The plan my doc has me on is a relatively quick (but not too quick) taper process. But its too risky to do any tapering at all while the leaking is still bad.
pinkelephantandmates 1 year ago
@pinkelephantandmates Please keep me posted on how you are doing. I tried tapering off of prednisone for the last year and it was 1mg every 4-6 weeks. I only made it down to 10mg then the lupus flare was just to much and I am at 20mg. I hope your kidneys are doing better.
treappling1 1 year ago
@treappling1 Thanks for your kind support =].
Im having abit of a tough time currently on the steroids, I feel so out of it, when I even look around the room its like im on another planet, do you get this with prednisone? I greatly miss the normal feeling I had when I was on a lower dose. I see my doc Friday so im really hoping for improvement in the protein leak. Its very frustrating because my kidney function is normal currently, nephrotic syndrome can be 1 tough bugger to throw off.
pinkelephantandmates 1 year ago
@pinkelephantandmates I did have that feeling when on high doses of steriods. My doctor called it a feeling of disconnect. It went away as my doses were lowered. Let me know what you find out on Friday. I'm not feeling to well after this last cytoxan infusion. I can barely get my head up off the pillow. I don't know whether to push myself or to rest... who knows!
treappling1 1 year ago
Hey =] Im a 19 year old Male from Australia and I was diagnosed with Lupus at 17. Your very brave to put this video up. Believe me I know how tough it is to show your face while being on a high dose of steroid treatment. I went through a 12 month spell of agony, slowly weaning off Prednisone. I got down to 5mg and got my normal face back, but I had a relapse and am back on 20 mg at the moment and my Doc is working her way on getting me back to a smaller dose. Hang in there! your a legend.
pinkelephantandmates 1 year ago
@pinkelephantandmates Oh I hate to see you kids suffer with lupus. You're the legend! I now know I had it basically all of my life but was never diagnosed until 2004ish. Yes, it took alot of me going back and forth before I finally just said what the heck and I put my nice round face on YouTube for the whole world to see!! The moon face has to be the worse. I hope your titrating down goes easy for you. Mine hasn't been so I'm back up to 20 mg. I was down to 10mg. Keep me posted.
treappling1 1 year ago
have u taken any nutritional supplements and natural remedies ?
Avatar2050 1 year ago
@Avatar2050 I did and for me it was a big mistake. I ended up in the hospital. Definitely check with your doctor before you take any additional medicines or supplements. Also, know that lupus is an over active immune system. We do not want to boost our immune system because it is already over active. Just keep that in mind.
treappling1 1 year ago
@treappling1 -interesting.... i just had a test for it as i had a butterfly rash, turned out neg thankfully.. my immune sys is very depleted thats the problem..
so its like the cytokine storm then, immune system attacks itself..?
Avatar2050 1 year ago
@Avatar2050 I'm not familiar with the cytokine storm. Lupus is an autoimmune disease where the immune system is overactive and it attacks our organs. Also, lupus cannot be diagnosed by a blood test. It is diagnosed based upon your medical history and symptoms. There are blood tests that can be positive with lupus but they do not mean that you have lupus and vice versa.
treappling1 1 year ago
@treappling1 - thats funny cos the doctors here in australia seem to think its detectable in an antinuclear antibodies screen that ive just had..! oh well doctors are totally naive and do not even think that nutrition affects health.. they are basically all drug pushers..
Avatar2050 1 year ago
@Avatar2050 From what I understand there is alot of misunderstanding regarding the ANA titer (antinuclear antibodies). A positive result does not mean you have lupus. You can have a positive ANA and be lupus free OR you can have a negative ANA result and have lupus.
treappling1 1 year ago
Thanks for making these videos, I think its really hard to put this up, but also its an amazing thing to do...
Im studying medicine, and now I´m researching about prednisone and I think that the most important part is to see how people feel and how their life is affected by this drug...
so thanks again for sharing this...
sebastas2 1 year ago
@sebastas2 Yeah for researching!!!! If you have any questions to ask me as a patient I would be more than happy to answer them. Thank you for the encouragement. Prednisone is your best worst enemy. The side effects are horrible but it does its job. I also have adrenal insufficiency due to the steriod treatment.
treappling1 1 year ago
I have in the past went off of the medications and found out that the disease is so much worse than the side effects of the medicines. It is so hard to beleive but it is worse than going through chemo and the list of the other meds that I take on top of the chemo. We need help and fast.
treappling1 1 year ago
So often the things we have to take for our Lupus turn out to be almost (way to close to be honest) worse than the actual disease.
Keep educating those who don't understand Lupus Tremia! I know how hard it is! I'm so proud of your being able to show folks what is going on.
Boothacus1 1 year ago