the evil prednisone
ive been taking prednisone since august after getting out of the hospital and i was a mess. while on prednisone for the first two months i lost weight, my skin cleared up of all problems completely, i felt good in general. that was all on 6o mg a day. then my doc took me down to forty and i gained like 20 pounds in two weeks, facial hair, acne, and my face is unrecognizable its so round. i also want to kill everyonw for no particular reason. whats with the latent side effects on the LESSER dosage i just dont get it. i hate this. :confused:
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- Hi, there. I too had a delayed onset of symptoms from taking prednisone. My acne did not kick in until after I had been taking it almost two months, but I am into my forth month of it now, and the pimples are everywhere, mostly on the bottom half of my face and under the jaw area. Just these gigantic, very tender things. My facial hair growth has definitely increased, I am going to electrolysis every couple of weeks to keep my "beard" in check, as it is very coarse and dark hair. I am controlling my weight well by being very aware of my eating habits and just forcibly telling myself to keep control of the frequency and portion size I eat, although I have gained 10 punds back from my pre-diagnosis weight (I had lost almost 40 pounds). I get the "kill" instinct quite a bit, and try to take a time out when I feel this way before I say and do things I will regret. It tends to pass in a few minutes if given time. I have told my family and friends about the mood effects of the prednisone, but I truly think they paid me no attention and just think I am using that excuse to be nasty. Just call me chubby cheeks! :D#1; Sun, 16 Dec 2007 22:50:00 GMT
- Hi, Living5oul.
Sorry to read your update. Not that this info is guaranteed to be especially *helpful* :rolleyes: but I did read a section in the Dr. Wallace hardcover explaining that Prednisone can be a crapshoot. Its effects are apparently pretty unpredictable from one person to the next--plus things can be going along pretty well for some time, leading a patient to feel generally OK about the whole thing--then whammo...
So you'd expect things to be even better on the 40mg dose--but could get a huge & unwelcome surprise to see a different result.
His book can be found in most bookstores & libraries. His writing style is accessible. Plus the index at the back is good, so you can zero in on the page(s) you want. Maybe what he writes on steroids could be helpful to you.
I really hope you get through this rough patch quickly. Hang in there! With my best wishes, Vee#2; Sun, 16 Dec 2007 22:51:00 GMT
- I also take Prednisone. I was at a high dosage for a short time then reduced to 20 mg for about the last 10 months. I have been further reduced to 15 mg, then 10 mg over the past month.
I also have some facial hair but its very light on the side of my face (like peach fuzz), some roundness of my face and some weight gain. I also feel quite angry from time-to-time and hear my husband say "calm down" frequently.
The Pred. was a life-saver for me but I hate the side effects. Since my dosage has been decreased, I have noticed some change (for the better) in my face. Bad thing is that I went into a terrible flare.
My Rheum. wants to keep the pred. at 10 mg (or even lower) and he has increased my dosage of methotrexate from 15 mg to 20 mg.
I am not sure which is worse.
Mere --#3; Sun, 16 Dec 2007 22:52:00 GMT
- I took prednisone when i had my first flare which was in may 2004. my rheumy started me out on 60mg a day for three days then 55mg for the next three days 50 for the next three days until i was down to 5 mg a day . then plaquenil was introduced that took 8 weeks to kick in . when i was on the prednisone i was really moody. nothing satisfied my urges, so i started painting. the side effects of moon face, acne and moodiness subsided as i went to a lower level, but i know that is little comfort. how long were you taking 60mg. Mere what is methitrexate.
kimmy13#4; Sun, 16 Dec 2007 22:53:00 GMT
- Methotrexate is a DMARD, technically a chemotherapy drug. It has been FDA approved for autoimmune disorders and psoriasis since 1989. It works in the same manner as Plaquenil and Embrel. I also take Plaquenil and apparently the combination work well together.
Methotrexate (MTX) works well for the arthritis symptoms of lupus and is used for Rheumatoid Arthritis frequently. It can be toxic to the liver, bone marrow and GI system. Other nasty side effects include hair loss and yes, it makes me feel lousy for a day or two after I take it. It is taken once a week and folic acid is supplemented to lessen the side effects.
Mere --#5; Sun, 16 Dec 2007 22:54:00 GMT
- What About Plaquenil Instead Of Pred?#6; Sun, 16 Dec 2007 22:55:00 GMT
- whelp, its been a hell of a ride, and i am now down to 10 mg of prednisone. im also taking 200 mg of immuran a day so that i dont relapse coming off of the prednisone. around january i should be done with the evil pill all together. im sooooooooo looking forward to losing this weight and getting my old face back. does anyone know about how long it takes for your face to go back to its normal shape? on the downside, the immuran has lead to a disgusting outbreak of warts on my once beautiful legs. ew. at least my hair hasnt fallen out (yet) hopefully, it wont...also im getting a few patches of psoriasis here and there, but the mood swings are mostly gone...and i dont feel like killing people at random. im sick of having lupus, i wish someone would find a cure already! im too young for this bs!! im turning 20 wednesday yay!#7; Sun, 16 Dec 2007 22:56:00 GMT
I've been taking prednisone for over 30 years and I can honestly assure you that once your dosage is adjusted to what your body can cope with and needs, your system then adapts, the "moon" face will definitely disappear. As no doubt others will testify, it is so much better to get on as low a dosage as possible of prednisone so that in times of flare you can then up your tablets to cope with the inflammation and so on. We have to have on a cocktail of drugs initially until we find the doses and so on that suit us individually.
I'm not being a know it all, but I do know how you feel at your age having lupus, I was diagnosed when 1 was 16 but had had it for a lot longer than that. Honestly, in time you will hopefully be able to lead a full and productive life, but you have to acept that there are going to be limitations. Please just don't push yourself too hard.
I can obviously only speak from my own personal experience of living with lupus and learning more and more about it for over 30 years.
Hope you continue to keep well.
goldenwings :angel:#8; Sun, 16 Dec 2007 22:57:00 GMT
- I've been taking prednisone for over 30 years and I can honestly assure you that once your dosage is adjusted to what your body can cope with and needs, your system then adapts, the "moon" face will definitely disappear.
Have you had any bone deterioration from being on prednisone for so long? I've been on a low dosage for two years and I now have severe osteoporosis and have suffered with fractures of both feet and my hip. My doctors tell me that I am an unusual case. In fact, my Rheumatologist, GP and Ortho doc all spoke with each other (by phone and face to face) about my fractures because they said it rarely damages a person's bones so fast and at a low dosage. They have ruled out any other cause by doing tests and more tests. I never suffered a broken bone in my life then whammo! All I needed was more pain :(
Oldbones#9; Sun, 16 Dec 2007 22:58:00 GMT
- Dear OldBones,
I have bad osteoporosis, too--but have never been on steroids. Runs in the family, on both sides. Are you taking anything to try to rebuild bones, like Fosamax or some similar product?
FYI, I've read that the disease process itself, with its chronic inflammation, also adds to osteoporosis risk.
Good luck! from Vee#10; Sun, 16 Dec 2007 22:59:00 GMT
Happy upcoming 20th birthday! I"m glad you've been able to taper your dosage. I'm also sorry about the warts and the weight gain. I took prednisone for a very short time compared to your course but I took a very high dose and I did get cushingoid (moon face, weight gain, upper body weight gain, etc...) in a short time. I took 40 mg for 7 days and then 80 mg for 7 days then I went off cold turkey and that was awful and definetely not recommended by anyone who has done it, talk about flare!! I noticed as soon as I was done w/ the pred that about 3 days later I dramatically improved in the moon face dept. My face really start to hurt almost like it was swollen, I don't know if this is common but I first noticed the pain lessened and then day by day gradually things got back to normal. And then even though I didn't look normal to me a couple weeks later, I looked normal to everyone else. It seemed like it took me about 4-6 weeks before I felt like I was looking more like myself and then the weight slowly started coming off too. The only thing I did have afterwards was acne but most people have this while they're on prednisone, mine came as I was coming off of it. Hang in there okay!! I know you have it really hard because you're young and beautiful and 20 and when you have these things that affect your appearance as well as how you feel it's just twice as hard for someone your age. hang in there!
Shawnee#11; Sun, 16 Dec 2007 23:00:00 GMT
- Hi VeeJ... (so sorry this is as long as a chapter in a book)
Consider yourself lucky that you haven't had to be on the dreadful prednisone and that plaquenil is helping you so much. I have a love/hate relationship with prednisone. :dizzy: I feel so much better when I'm taking about 15 mgs. per day but I despise the side effects. I've been on 5 mgs for about two months and I need to have a higher dose but we don't want to do any more harm to my bones than is absolutely necessary. I gained 65 pounds in one year and I look horrible. It's embarrassing to say but I find myself not wanting to go out and socialize because of my weight. There's not too many days that I really feel good enough to go out shopping and all but I really have a problem with people seeing me look like I do. I doubt if people really care what I look like but I was always slim and small boned (you just can't see the bones now because of all the fat)! It seems that there are always some who are so insensitive and say "what happened to you" or something similar. I sometimes wonder if all the weight I gained had something to do with my fractures since I'm not use to carrying around this 65 pound bag of potatoes.:) I had to quit my job of 14 years two years ago because of this dd and I was so use to being with the public. I think that being homebound with a broken hip and not being able to exercise made my weight gain worse. I also haven't been able to lose but 10 pounds (still can't exercise much because of my hip) and that is frustrating.
My mother will be 90 years old in less than a month and she has had one broken bone. She fell a few years ago when she missed a step and broke her wrist. When she was my age, she was active and had a 13 year old son to keep up with. I did have a great aunt that was hunched over for as long as I remember but she never had any broken bones that I know of.
I am taking daily injections of Forteo to strengthen and rebuild my bones. I can only be on it for 18 - 24 months and it is a controversial drug. There's a black box warning because it gave growing rats osteosarcoma in doses 4 to 60 times higher than a normal human dose. Forteo was approved by the FDA in 2002 and most doctors use it for those that the benefits outweigh the risks. So far, no humans have developed osteosarcoma so I just try not to worry about it. My bones have improved 7.1% in the lumbar spine and 2.1% in the hip. I've been on it for about 7 months.
I'm having trouble with my kidney function. I have to have another metabolic profile because my serum creatinine is staying elevated. I had a weight variation of 17 pounds in 6 days. With this disease, it seems like it's just one thing then another. The bone and joint pains are the worse though. Plaquenil and Imuran have helped the fatigue I had for so long but I still can't do much without getting tired easily. At least I'm not on the couch all day like I use to be so that's a definite plus.
Well....I find myself just typing away. I only meant to write a few words but guess I needed to vent a little. I know that you are always here to listen to all of our complaints.
And living5oul....If you read this, I also take Imuran and I started getting warts :eek: on my forehead and my arm. That all just cropped up suddenly and my Dermatologist freezes them off everytime they sprout back up. Right now I have bandaids on my arm and spots on my forehead from my visit with him last week. I've never experienced warts before and I think they are nasty looking even though they are small. My doctor said it's the Imuran. He said Plaquenil won't cause them or Prednisone. Just another one of those side effects from taking an immunosuppressant.
Hugs to all...
Oldbones#12; Sun, 16 Dec 2007 23:01:00 GMT
- Dear OldBones,
Wow. I knew from some of your earlier posts about some of your up's & down's, your meds, etc. But, gee, I had no idea how much you'd had to cope with of late.
Re: your comment about 17-lb. weight fluctuation in 6 days--is water retention also a factor for you? I know a young man (well--a LOT younger than I am, but not a kid) who also has to watch his kidneys carefully. He was Dx'ed with SLE at 17. He has to really limit his protein intake.
I can appreciate fully how hard it is to have to back off a job you like and are good at. My husband hit the roof in the eraly 90's and begged me to quit. He rarely poaches on "my turf"--so I knew it had gotten pretty bad. My turning point was collapsing for the umpteenth time on the subway platform, but this time, I almost harmed the slightly-built and very kind man who helped me: I'm tallish and nearly overbalanced us both. That REALLY made me think things through: what if I hurt someone else? And that was an unendurable thought...
Around the time I was Dx'ed, I'd peaked weight-wise--this with no meds involved. I think my metabolism had just gone off. It came off slowly; I didn't press it. Just made my MAIN goal keeping my head screwed on straight, reading fine books I'd not had the time to read, doing small things for my friends and neighbors as energy permitted. I even joined a book group at a local library. Imagine--spare time to read as much as I want for the first time in my adult life.
I know hip breaks mean tough times. Maybe all you can do is find something every day that you can do reasonably comfortably and that you love doing--that great book, a special TV series, the friend who loves talking with you, the music that lifts your spirits. (I just realized how much my doggie gets brushed. Fortunately, he loves it--thinks he's being pampered. :D )
Anyway, thinking of you! I so hope for much better days ahead for you. Always, Vee#13; Sun, 16 Dec 2007 23:02:00 GMT
- I have read all these posts and all I can think of to say is " OH MY GOSH" At this moment I am considering cancelling all my appts in Jan and just living my life. This thing sounds as if the cure is worse than the illness. When my sister had cancer, then later a heart tansplant she was on most of the stuff you mentioned and she never had these reactions. After 2 years her meds had all been reduced to minimum doses and now she only takes very small doses of gengraff and cellcept. She never had any of these side effects though, except for the mood swings with the prednezone. I am seriously considering cancelling all the biopsy and sleep study and edoscopy, all of it. The disease is bad enough, who needs meds that make it worse.
Over the weekend and up until this morning I was in much pain again. Joints didn't want to move at all and arms were red.I thought about calling the Dr. for stronger pain med but I didn't. Now I think that is much better than what U all are going through. I hope things get better for all of you.
May God Be With You and Bless You
Patience 50 :wave:#14; Sun, 16 Dec 2007 23:03:00 GMT
- Hiya Oldbones,
Sorry about the delay in replying. I haven't had any bone breaks because of the steroids. The only thing that ticked me off about osteo and prednisilone was that I wasn't even told that I was at a risk from it becaue of the steroids. I know it was something that I should have asked about but I was only very young at the time of being put on it, and it literally saved my life, and also when you're battling different illnesses, it isn't something you think of is it?
I was only put on a "bone" tablet about 2 years ago. Even that was hit and miss, because the first lot gave me terrible inflammation of the gullet. I am now on one that seems to suit me, which I take once a week, along with calcium tablets that are taken every day. (or not as in my case, I've got a dreadful memory)!!
I do fall quite a lot because I also have a nerve and muscle wasting problem, but I must say I haven't broken anything. I do get a lot of cracking and so on, but that's all.
You do seem to be having a dreadful time of it. I don't know whether or not osteo runs in families, but I suppose they have already run those tests on you. I really, really wish you well in getting it sorted out.
Please contact me any time.
goldenwings :angel:#15; Sun, 16 Dec 2007 23:04:00 GMT
- Hi everyone--
Oldbones, I'm so sorry you've had such trouble, I'm sure it's especially frustrating to have all this decline so rapidly. Hang in there, I hope that you get through okay! I'll say a little prayer for you!
Now Bonnie, you're next!! Don't you dare cancel your appointments! You need to have those done. Now that said, do keep in mind that you are the patient and as you said, you are the one that has to live your life. That means that a doctor can prescribe whatever he wants for you but as you're the one that has to take it and deal with the side effects, you can choose to be noncompliant. I feel like if patients do this they should tell their doctors of their noncompliance and why. I think all of us have a responsibility to ourselves to do our own research on new medications, treatments, etc... that our doctors may prescribe. Doctors don't give enough education but patients generally don't seem to educate themselves enough either. I know a woman here in my town who has been diagnosed w/ SLE for ten years. She saw a rheumatologist who sent her home with a handful of prescriptions. She just didn't have a good feeling about taking these medicines, so she researched, she prayed, etc... and she has successfully managed her Lupus her own way without medication for ten years. She has a very strict lifestyle she adheres to but she's had several doctors tell her that's probably the best thing she could have done for herself. Also remember that prednisone is usually something doc's like to use short term if possible and in the lowest dose possible. The real icky side effects like osteoporosis and weakened skin usually go hand in hand with long term treatment. And from everything I understand so far, long term steroid use is usually prescribed for those w/ definite kidney or organ involvement or when other meds like plaquenil can't be taken. Okay, I'll get off my soap box now. But you keep that appointment please!! You worried all of us sick when you had your craft convention and were so sick. You need to prevent that from happening again if you can and prevent further damage that may occur in the future. Just remember, you are the boss of you, the doctor isn't the boss of you, he doesn't have to live w/ the side effects etc... like you do, so find your solution that fits you but still lets you live your life!
And wonderful Vee, what a fabulous attitude!! I was so impressed to hear how positively you looked at quitting a job you love. I am so impressed and hoping that I can be that positive in all aspects of my own life! The world would be a better place if there were more optimists!
Well, I've gone on long enough!
Shawnee#16; Sun, 16 Dec 2007 23:05:00 GMT
- Hi, Patience.
I really hope you do NOT cancel your appt. Personally--and we are all different--I would not want to live on pain meds that do nothing to alter the underlying cause of the pain.
I've known otherwise perfectly "rational" people who were taking a TON of Percosets (20+ a day) BUT DID KNOW OR HAVE TREATED their underlying problem. Aren't some of these things flat-out addictive?
Anyway, I'd rather face down a new dr. any day--another thing I find a little difficult. Thing is, I'd despaired of finding help at times, then ended up marching into the office of someone who "got it" very quickly indeed.
Ever onward, as they say! Vee (with yet another sinus cold... AAAARGH.)#17; Sun, 16 Dec 2007 23:06:00 GMT
- Hi Vee,
Sorry to hear about your cold. It must be getting worse as you are growling now instead of just mentioning it. Can you tell if it is a reg cold type thing or a Lupus flare? I only ask because my sinuses have been active all week too. Especially in the mornings. I get sinus stuff now and again.
I will probably go ahead with it all. I get a bad case of the heebie geebies sometimes though. This thing is causing enough pain. I don't think I want a medication that takes this away but causes something else. Seems as if I'd just be trading one devil for another, if you know what I mean. I saw my sister and others go through so much and I have always known that I would not have that kind of strength. My sister has told me she would never do chemo again either.
Shawnee has a valid point though, just because a Dr. recommends a thing doesn't mean I have to agree and take it. I am way too heavy now so I would have a problem with a drug that would make me hold water or gain more weight. Thyroid problems cause weight gain and even though I have managed to lose 10 lbs since my thyroid meds have been brought up to normal, 10 lbs isn't much and I still hold fluid sometimes for no reason and I can always feel it in my middle and my hands before I see it in my feet and ankles.
Right now I'm not taking a lot of pain meds. Tuesday, before this windy storm system came in I was hurting pretty bad but 2 arthritis strength thylenol did the trick. Took 2 again in the middle afternoon. When the system hit most of that went away and the aches I have all the time I usually manage without pills. I do some meditation and stretching. That often eases it and allows it to be managable without pills. The PT helped so very much too. I have kept up with it and added some to it as I feel I can so I think my legs are regaining some of their strength again as well.
I must go get a shower and get this day started. I have gifts to wrap. Have a grandchild's birthday this weekend and her birthday gift is mixed in with the Christmas gifts so I must get that done.
Take care of yourself and that cold. May God Bless and Keep You
Patience 50 :wave:#18; Sun, 16 Dec 2007 23:07:00 GMT
- Hi to all....Vee, Goldenwings, Shawnee, Patience :wave:
Thank you all so much for thinking of me. I was in a "feel sorry for myself" mood when I wrote my post. I guess I felt a need of letting the world know that I was going through a bad time. Sometimes in the nighttime hours, everything has a tendency to look more depressing than in the light of day.
I have had a rough time of it this last year BUT I can do so much more now than I could a year ago. It does take a while for a hip fracture to mend. I am so thankful that I haven't had another fracture so things must be getting better. I have two very understanding doctors that I see on a regular basis and they know what I'm going through so that helps. One thing that we all know is important ..... to have a doctor that we can trust and is sympathetic of our many varied symptoms. This message board helps a lot too because we all can empathize with each other.
Patience..... Please don't let my experience with Prednisone or any other medications cause you to change your mind about the treatment plan your doctor has for you. Our bodies are all different and like I said in my other post, all my doctors agree that the steroid induced bone damage was a rare occurance. It's definitely not good for your bones but usually taking Calcium and Vitamin D will ward off any damage to your bones. Taking Actonel or Fosamax also helps if you can tolerate it. Mine was an extreme case so please remember that and don't let it influence your decision. Please?
Thank you all for being so kind and understanding. Thanks for letting me share my bad night with you. I always just try to think that every day is a blessing from God so I better make the best of it. I just sorta had a relapse that one night. ;)
Trying to stay strong....
Oldbones#19; Sun, 16 Dec 2007 23:08:00 GMT
- Hi oldbones,
I am sorry you have been having such a hard time of it. I was having a bit of a day myself when I read your post. For the most part I have been fortunate with this disease but that has been changing and now everything seems to make me just want to run for cover and hide.
The bone issue is one all women face. At the moment I have very strong bones. I have been taking extra calcium ever since I entered perimenopause. It must have helped some. I am concerned though because I also take synthroid for the past 5 years. Long term use of synthroid often results in bone loss as well so you can understand my concern about the possibility of taking another drug that causes bone loss too.
Also, in the past 5 years I have put on much weight. My 5 ft. frame was not built to sustain this amount of strain but I can't seem to get rid of it no matter how hard I try or what I do. Therefore, the thought of extra lbs from a drug terrifies me to no end.
Many years ago I smoked. I quit for the sake of my health and to be here for my family longer. I had no trouble with weight when I quit either. Now I look like two ton tillie and I hurt all over and no one seems to know if I am suffering all the symptoms and pain from weight strain, connective tissue damage from Lupus, or hypthyroidism. Dr.s keep telling me I must lose weight. They have found that being overweight kills more women each year than smoking. So if they give me a drug that makes me gain more weight than the hypothyroidism did I'm just doomed. The irony of it all is just too much.
I will go through with all the tests though and find out just how much of me is involved with this disease. Then I will decide on drugs when Dr. suggests them. Like Shawnee said, it is pretty much my choice what to take and what not to take. Of course if I refuse to take what he prescribes I understand he will stop treating me and I suppose that is his choice. I am crossing bridges before I get to them. It may very well be that something simple will control this for a long time so I am in a panic for no reason.
I hope you are feeling some better. Have a good weekend.
May God Bless and Keep You
Patience 50 :wave:#20; Sun, 16 Dec 2007 23:09:00 GMT