PredniSONE and lupus

Hi All - I have been off prednisone for one week and I am not doing as well as I thought I would be at this stage. My symptoms are not flaring, which is a very good thing but I am so tired and feeling very depressed and low energy. I thought I'd feel great once I was off the evil prednisone but so far I am feeling almost as bad as when I was on it. My moon face has not started to go away, which sucks, but I guess I have to be patient. I am so tired of this situation as it feels never ending. Part of the problem is I have continued to work throughout my ordeal, and it's been very hard at times to carry on like a normal person who is not sick. I have been sick since last November (with an autoimmune disorder) and I had really hoped by this time that I'd be on my way to being better :( Prednisone saved my life but the side effects are horrendous, as are the after affects of it. Good luck to all who are taking it. I share your pain and frustration.

I am 22, I have Lupus and RA. I am on other meds too but I am more than positive that Prednisone has brought about my moon face and maybe my sleepless nights. I workout everyday and in the best shape I have been in my whole life but it sucks because I am only able to be this healthy because I am on all these meds including Prednisone. I probably would be using a walker. So basically its a choice of vanity(huge head) or good health.But I have asked my doctor to lower my doses. Was at 30mg, I am now at 20....hopefully I can get down to just 5mg and still be able to move my joints as freely as I do now

Hi there... I have just found this site and I'm very grateful to everyone who has taken the time to sit down and tell us their story mine is very similar. BELIEAVE me I feel like I am pushing my family away and I'm losing my relationship with the one person who used to make me feel like I was the most beautiful woman in the world.
I'm a 40 yr female have or maybe had a great job that I loved... On April 12 I noticed a small red rash on my lower right leg no big deal went to the Dr. gave me some cream and sent me home well I went to work and by the afternoon things just seem to get bad my legs began to swell and little blisters started to pop up so I went to the E.R. they had no Idea what was wrong with me got me an appointment to see a skin DR. so I went home but the pain from the swelling was so bad I could not walk any longer went back to the E.R. they gave me some pain meds and called in some other DR. things had gone from bad to worse my feet had gotten to big I could not put on shoes and I had bruised completely across the bottoms of my feet they put me on 30mg of PRED. and it seem to be under control sent me home after 3 day in the hospital things were good for about a day or so I thought I would go back to work well that was not a very good idea.... My sister had to come and take me back to the ER where they did 2 biopsies and still have no idea what is wrong with me. so now they put me on 60mg of PRED the rash has gone, lots of scaring on my feet because of the blisters once they broke and dried out but I can live with that....
It's the side effects that they don’t tell you about,
MOON FACE I can't look at myself cause really that’s not me anymore,
WEIGHT GAIN I have always been thick but I can't handle the extra 30lbs I've gained,
MOOD SWINGS are unbearable,
PAINFUL JOINTS, CAMEL HUMP, BLOODY NOSE, BRUSING, SORE TEETH/GUMS, DRY EYES, FAITIGE, and worsted of all
I don’t have a support systems in my life so I'm fighting this by myself everyday, I have 3 kids that I have tried to explain all this to but they don't get it and well my boyfriend he tells me he understands that its the meds pushing him away but if I can't figure away to control this I will lose every thing including my job. I cant even get the energy together half the time to make it up and down the stairs which also comes with the pain of just trying to lift each leg up to climb the stairs, I also have the camel hump which I find very painful, The acne and the hair growth that I have to get wax off once a month cause I feel like a man I feel like a loser and as of the last couple of days I just want to give up I am now down to 20mg per day but I find that I am feeling so sick I cant think straight I hope and pray for each and every person out there that has to take this MED that you get better and I do hope that my symptoms wont come back. Thanks for being here and I’m glad I found this site. I know now that I’m not losing my mind completely. Elizabeth.

I have now been on predinsone for 4 months and I started out at 102 and now I weight 120. The worst part about this is the moonface and the bloated stomach. The doctor said that once I get off the drug that my face will go down but not the weight. Also, I have really bad mood swings.

Hi! I am a 36 year old female and have been on this HORRIBLE HORRIBLE drug (prednisone) for 2 1/2 years now..... Hopkins doctors still arent sure exactly what i have. My immune system is attacking my liver so to speak. My body is basically looking at my liver like it doesnt belong and is attacking it with large multiple lesions that is eating it away... the good thing is that it hasnt interupted the functioning of it yet but is leaving horrible scar tissue. I have been in and out of the hospital 13 times, have had just about every test imangable, 12 liver biopsies and they STILL have NO clue! They are leaning towards Church Straus desease and Wegners but the weird thing is i have half symptoms of both. The first year they had me on 80 mgs of prednisone a day which had seemed to put me in remission for about 4 months and then they came back even worse so i was put back on the prednisone, 80 mgs a day AGAIN along with 100 cc's of Methotrexate, another not so nice drug... i had EVERY SINGLE BAD SIDE EFFECT OF BOTH DRUGS!! This second time around was ALOT WORSE for some reason!!! My body DID NOT LIKE IT!! Nausea, hair loss, moon face, gained 40 pounds (and i was in great shape, worked out, i am 5'4 and was 110 pds!), EVERYTHING was swollen, legs, ankles, arms, neck, face, had the camel hump, fingers and especially my belly!!! UGH!!! Have bone, muscle, and SEVERE joint pain! Kaliedescope vision, dry eyes and then had mucus discharge (kindof like pinkeye), headaches, intestinal problems.... VERY CONSTIPATED and then the opposite!!! I literally felt as if i had turned into a man in my behind!!! Sorry to be so gross but thats how bad it was!!! Jaw problems, teeth and gums as well, skin sensitivity and have little bumps all over my skin (kindof like tiny little moles), itchy, broke out with acne and pretty much NEVER had more than 1 pimple a month, had facial hair (VERY DISGUSTING!!!! HAD IT WAXED EVERY WEEK!!!!) and then on top of all of that the swelling of my liver not to mention the PAIN! I was recently in the hospital again with 12 new lesions, pneumonia, and 104 fever. My doctors said the Methotrexate was the cause and i was having a bad reaction to it so they now have me on 100mgs per day of Azathiroprine. I am now finally down to a maintenance dose of 5 mgs of prednisone cause my body was starting to reject that as well. I thank god that i am now down to that dose!!!! It as only been 2 wks and the withdrawl symptoms are horrible worse then they were but i know what is to come =) loosing all this fluid and all of the HORRIBLE side effects i listed above. I will have to be on the maintenance dose of 5mgs the rest of my life and can live with that cause when my body gets back to somewhat normal i wont even notice that im on this CRAP!! I will be on the high dose of Azathiroprine for a few years and then on a maintenance dose of that as well for the rest of my life to keep whatever this is that i have under control.... the scary thing is is that they arent even sure that all of these meds will even work...... im a guinea pig..... The only thing that i am on out of all 25 pills/meds that i take everyday that works is my pain meds. Oh and i also forgot to mention that i had to be put on some "HEAD CASE" medication (thats what i call it =) ) for depression. Its a low dose but it does seem to help... I am terrified of what the future holds but continue to be strong and have an amazing support team... my fiance and family =) I dont even want to think about how i would be without them. I go back on the 25th of this month for my MRI so please who ever reads this keep me in your prayers as for all of you are in mine. I feel for each and everyone of you that has to endure this horrible drug everyday and i hope that everything works out you. =)

Sue =)

My doctor prescribed me Prednisone on May 3. I'm on 10 mg. I start out on 3 tabs 2x a day for 4 days, then 2 tabs 2x a day for 3 days, then 1 tab 1x a day for 2 days. I was put on this for a sudden attack of joint pain/stiffness/swelling of my elbows, wrists, hands, knees, ankles and feet. I was in extreme pain. So far this drug has given me no side effects other than needing to urinate a little more often than usual. My pain is gone, as is the swelling. I'm almost scared to go off this b/c of the fear of the pain coming back. My blood tests came back on Friday and my doctor told me that I had Rheumitic (sorry, I know that's spelled wrong) inflammation and if the pain did come back after I stopped the Prednisone that I'd have to do more blood tests. I just turned 30 and I'm scared to death what else might be wrong with me.

I am not a doctor, but I suggest that everyone who is taking prednisone and having these nasty effects...to get weaned off of them. THIS DRUG IS NO GOOD!! My Rheumy rushed me off these pills just last week and doesn't want me back on them...unless I run in to a crisis with my Lupus. I have been on these pills on and off since 1997 and the side effects are ugly. Constant craving for anything I could get my hands on, round face, mood swings, no sleep, brittle bones and bones cracking,sleepless nights and one major problem was the thinning of my hair. Boy did it do a number on my hair. So I am trying to grow it back little by little by taking baby steps. That's what my Rheumy told me. So I am just on the Plaquenil and taking my multivitamins. I am just hoping for some resolution and I wish you guys all the same. But please think about another alternative to prednisone. That drug is awful.

I just started on Predisone for Lupus, and it is playing havoc with my eyesight. I am actually taking 1/2 a pill, instead of the whole p ill the doctor prescribed. Yet, I've been on it only 3 days, and the burring of vision keeps getting worse. Sorry, nothing is worth losing my vision over. I'm going off the drug, with or against medical advice.

taking 50 mg prednisone since yesterday - 2 doses only so far. very flushed face and neck, hot from the inside. They are treating angioedema, possibly underlying lupus.

Whoa, folks, Prednisone for 10 days? I thought the maximum was 7 days, else dire consequences beset you. I have Lupus and take only 20mg a day. The side effects, when I get off are severe joint pain, muscle tenderness and headaches but then Lupus does eat your joints and skin... Anyone out there knows anything about interval between treatments?

I have been taking 20 mmg of prednisone three times a day. I'm taking it for lupus, and I have gained over 10 pounds in a week. It makes me feel wonderful, but I hate the side effects. I am gaining so much weight, my face is so fat and people continuously ask me if I'm pregnant. Also it stops me from staying asleep but not from going to sleep. However, that doesn't bother me so much.

I have been diagnosed with Dermatomyositis (muscle disease called inflammotaroy myopathies)....very painful and weak is my whole body...wherever there is a muscle< I was in pain. They tested for Lupus and still not out of woods on that one....but they are treating me for the other as the symtoms with the skin also......I have been taking Prednisone for 11 days now in doses of 20mg three x day...It has taken my extreme pain away at night as I was so inflammed my pressure areas of my body would not only be in pain but numb....my body is very weak underlying complaint and unable to walk a great deal, but must keep working on my job....so it has at least help me to keep going....One thing is my voice and my eating are altered as I can not swallow because of my muscles "giving up" when they become tired in my neck....So I must be careful what and how I eat......and I anwer phones all day at work and talk with residents in a Retirement Community here in Prescott AZ....and my speech is getting harder and harder to control at times....Weight gain....not yet as I am watching that I eat only "good" food that counts when I can eat it......I do not know if this is from the Prednisone or from the disease I have....I have heard conflicting answers. If anyone could let me know, I would listen to another opionion.....God is good and He will provide strenghth and care for me.....have faith!

I was given prednisone for my lupus and hemolytic anemia. I started with 60mg daily and after 2 weeks cut back to 40mg then 20mg and now I am on 10mg. It has only been 6 weeks, but I have gained 15 pounds and have the moon face. This is depressing, but the worst side effect was the mood changes. I found myself so angry and bitter and took this out mostly on my husband. The poor thing.. Luckily he is very supportive and so is my mother. The weight gain is upsetting, but I at least knew this would happen and with the help of my family I am confident that it will come right off.. To those of you also worried about this side effect, just remember the more you worry about it the harder it will be to take it off. Its better to be healthy with extra pounds then be sick any day!!! Good luck to you all!!!

hello, have been on prednisone for about 7 weeks, 30 mg a day, due to a weird rash on my leg following a very bad burn....started on leg, moved to face (badly), splotchy, itchy and crusty. Leg still isn't healed due to scratching etc, face problem stays away as long as I don't alter my intake. Getting all the usual side effects, swelling face, terrible aches in joints, sleeplessness, bad indigestion, thing is I've been to several doctors, had blood tests done for lupus,/swab/skin tissue taken from burn area, nobody knows what I may have. Please, if anyone knows anything about this condition, write here. Thank you

Hi everyone..........
I have been on prednisone for aobut 6 months. I had a flare up of this skin itching I get and prednisone gets me over the flare up. The doctor also gave me 12 refills and the dosage is 30 mg. a day. The doctor that put me on it refuses to see me saying that I am "alright." I feel just as miserable as I was 6 months ago. (by the way, he also informed me that I have Lupus AND the blood works says not!) I have the moon face started and I "snap" easily at my housemate. Also the weight is coming on fast and furious. I have lost interest in doing the things I once enjoyed. I pulled out of church choir and I don't care to go to polka dances, which I have done for 39 years. I am just NOT ME! I bruise easily on my arms and am breaking out more with psoriasis. I don't want to go anywhere or do anything, I fell like crap! And I HATE feeling like this!

I have lupus. I've been taking prednisone for a year. the side effects it has caused me are insomnia, diabetes, and just recently i have not had a menstrual period for 2 months. and no, im not pregnant I've been tested for that. currently seeking a doctor for this. any other suggestions. let me know.

Not too good with computers so apologies for the first effort! :o)

Right.......I have Antiphospholipid Syndrome (also known as sticky blood and closely related to Lupus), I have Primary Sjogrens Syndrome and Ankylosing Spondilitis (Lucky Me!). I have been taking 10mgs of Pred' for 3 years now and I go through periods of weeks when I suffer really bad dreams - my children dying, my wife, me. I am usually an extremely happy, out-going person who - although reasonably ill - sees the best in life etc etc. I am also in constant difficulty with stomach and bowel pain (nice :o/).

It would be great to hear from anyone who has also been on the drug for a prolonged period and also experiences these side effects? Thank you.

I am currently wining off of Prednisone, I'm taing 2 mgs every other day. I was put on Pred when I was diagnosed with Lupus 2 years ago. My lupus rash has come back, but that is the only lupus symptom that was returned. My doctor did a great job of taking me off Pred slowly.

I have lupus and a congenital malformation of my cervical spine which causes lots of pain and inflammation.
Anyway, my side effects are always the same -
Hyperactivity, loss of appetite, loss of weight, insomnia,
and an overzeolousness that only an employer loves of is employee... who suddenly wants everything done perfectly..... I become exhausted and have to take sleeping pills to get any rest or I will NOT SLEEP at all...no fun when you are on 75 mg and tapering on and off .... the horrible thing is I get these symtoms even on small dosages...it is like being on speed or some hyper drug...I don't know what else to take for my lupus that helps with pain and other problems I have. I just want to sleep and not feel manic...

prednison is an evil drug but even that i have most of the side effects i still needed... i cant function without it. if i try to stop even reducing the dose order by the doc all the problems start. headaches, dizzines, swelling on arms, legs, ankles, shoulders and knees. i have been on prednasone since april 19,2005. i think im addicted to it, thanks god for this site i know now that im not alone and all of you have the same problems i have. now i hope all of u can cope with these med.
these side effects are not easy to deal with it but if the med is working hang in there. i try to quit just like that when i was on 60mg but believe me is not a good choice. god bless all of you and i wish you the best, by the way i dont know if the side effects are from the pred or the other 10 med i have to take daily, plaquenil, pred, methotraxate, folic acid, hydrocordone, prevacid, percoset, sulivanc, albuterol, etc... i dont wish my desease to no one... asthma, rheumatoid arthritis and lupus....be patience and good luck.
nora from las vegas

Hi I have Lupus for the past 12 years nad I am treated for the past year with Prednisone. At times they go up to 40mg and than taper it down. Currently I am taking 7.5mg daily and I experience dizziness and chest pain and night sweats. For the depression I take Trazadone, which helps me to sleep at night. Anyone would like to correspond with me, please do. Thank you.

I've been diagnosed with a mixed connective tissue disorder which is a crossover of Sjogren's, Dermatomyositis, and some Lupus.

I've been on 60 mg a day of Prednisone for almost a month now. I've been slowly realizing some side effects.

I had a really bad mood swing yesterday with my kids, which I feel just awful about today. I never had a mood swings before that were really really bad. It was a bit scary, because at the time you don't realize it and upon later reflection it's pretty obvious you weren't in a fair state of mind.

I've also noticed a very puffy face and some weight gain, which i am also going to blame on the holidays heh heh. I haven't felt my appetite increase though, but I feel bigger.

Also, the last few days I've noticed I've been getting really hot and I need the fans on and I've been sweating a bit. It's December and I'm sweating! Can't wait till this summer!

My father had a leg amputation on Sunday. It took several days before it could be done becasue his blood pressure keep undulating until he realized that it was the prednizone causing that to happen. He has lupus. Anyway I did not know there were so many side effects to this drug. My dad has it all, indigestion,weight gain, blackened atches on his first, unexplained bleeding . he has been on pred for over 20 years i think. it is very depressing to read that he may be very sick without it and it is also making him sick. With his new condition he will need to lose weight to get around comfortably. Is there anyway he can decrease the dosage

My dad had a leg amputation on Sunday. It could not be done at first because his blood pressure kept going up and down. Anyway he finally realized on Saturday that it was the prednizone making this happen. He has lupus. so i come online and find out about all these side effects. And he has most of them. He has been taking that stuff for over 25 years. He has the unexplained bleeding, the acid reflux, weight gain, blackened spots on his face, hardening of the arteries everything except the oesteoporosis thing. Now that he has lost his leg he will need to get the weight down so that he can move around comfortably. It is very depressing for me. he is 69. He also has a heart condition, i guess from hardened arteries and stuff, which was why they had to remove his leg. Anyway I can't seem to help feeling very helpless in this and i want to k now if there is anyway it is possible for him to get off this drug or even decrease the dosage. thanks for your responses.

Hi,
I'm taking prednisone along with hydroxychloro for mild lupus and it helped ease my pains. I'm on other meds but since taking prednisone I noticed some side effects that I didn't have before.

After reading the comments on this site, I have a sense of relief to know that I haven't lost my mind. Prednisone does have side effects. Although I am on a low dosage, I have gained weight (I had lost 20 pounds prior to prednisone and have gained back 10 pounds); have an increased appetite especially for sweets and treats; have difficulty sleeping through the night--I sleep about 3 hours, get up, then try to get back to sleep to no avail. My abdomen is bloated, my face is slowly becoming rounder.

Prednisone has helped me to feel better but I'm looking forward to getting off of this medication.

I was put on Prednisone to reduce an Orbital Tumor. I was on it for 3 months with varying doses. I was hopitalized and they had given it to me through an IV. Currently I've been off of it for 2 months. It worked, but not without lasting side effects. At first I had SEVERE night sweats, I'd wake up in the middle of the night to change my PJs, pillow & sheets. I gained about 15 lbs, I was mean & short-tempered, I had a short attention span, I lost muscle mass, I felt shakey and jittery, I used to sleep well at night and still to this day I have a hard time sleeping. My current problem is SEVERE hair loss due to this medicine. I'm going to see a Dermatologist tomorrow to see if there is any meds that can reverse this. Although I don't like these side effects, I think it helped me when ALL my doctors said I should have surgery, the Prednisone worked enough that I didn't have to. However, there is no guaruntee that it wont come back....then I'll be back on this life altering medicine.
Good Luck to everyone out there!!

I was treated with prednisone for interstitial nephritis in Dec '03. Started at 60 mg for 2 days, then 40mg for 4 weeks. Doctor tapered drug too soon and too fast. Experienced painful swelling of joints of hands, elbows, shoulders, knees and ankles. Plus large, red, hot and very painful rashes and welts on neck, torso, arms, legs, particularly uncomfortable at pressure points like waistband and bra straps/bands (sides of stomach and breasts felt as if on fire). Was put back on prednisone in Feb '04 at 20mg daily and symptoms (which now I realize were side effects) subsided. Currently tapering again starting at 15mg for 3 wks and now on 2nd wk of 3 wks at 10mg...rashes/welts and aches have returned, but not as severe. I will be seeing my doctor in 2 wks for further tapering instructions (kidneys are fine and fully recovered). I had concerns about my "symptoms" being lupus since I got a positive ANA result, albeit a weak one, and my problems stemmed from the initial renal insufficiency. A dermatologist recommended I see and allergist because of the rashes. Although I'm not ruling out lupus or allergies just yet, after reading all the side effects on this website, I would have to think these aches, pains, rashes and swellings are prednisone related and I hope and pray they will go away once I'm off the prednisone. I will persue a more definitive diagnosis if the side effects continue and/or worsen after going off prednisone, but if anyone can offer a timeline as to how long the side effect took to wear off after being on prednisone for about 5-6 months (including tapering period), I would appreciate an e-mail.

I've been on and off Prednisone for 11 years now. Highest dosage was 100mg, but I rarely need to get that high anymore. Although this is a particularly bad flare (Lupus) and I'm taking 80mg now. They say it's the miracle drug that kills. It saves my life now, but will destroy my body over the long run. I'm hoping someone comes up with an alternate solution. My side effects are: weight gain (but with lots of exercise and paying attention to what I'm eating, I can maintain), puffy face, for the first few days - very hyper (MUST CLEAN - strange), then low lows. Also, very important side effect to know about: mistaken feelings of being mistreated (my poor boyfriend had to get an "explain your behavior" lecture when he hadn't done anything wrong). One of the worst and most dreaded side effects is night terrors/hallucinations. I will have an AWFUL nightmare and wake up and I'm still seeing it (i.e. 4 ft spider dangling above my head).. takes 5 minutes awake for me to talk myself into realizing it's not real. I have also lost control of my bladder in the middle of the night before. These only happen on high doses (>40mg). I also get flushed and hot when the med is wearing off and I know I need to take another dose. If I'm taking >40mg/day I will space it out every couple of hours. Every body is different. I don't have the acne... but there's always time! lol... Good luck, everyone... Know your body...

January 8, 2004

I was diagnosed with lupus from 1999, from then I was put on Prednisone. First from 5mg now to 20mg a day. I have experienced many side effects such as Moon Face, wieght gain, sweats, swelling of the belly and fevers. Sometimes I feel as if there has to be another way. I am now resorting to natural remedies i'll see how that goes.