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Old 07-16-2003, 05:49 AM   #1
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Post Can anyone share their experience with prednisone?

My Nephrologist says I have lupus and wants me to take 40mgs. of Prednisone a day. I am hesitant to take this medicine b/c of all the side effects. I would really appreciate any input or can anyone share their experience with this medication? Thanks

 
Old 07-16-2003, 09:54 AM   #2
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Hi Flowerfairy,

I was diagnosed with lupus since May 2002 and it was hard to believe it happened on me. I took 70mg of the medicine daily. I listened to my doctor's advice to take the steroid regularly. It seems to be steady and going sofar so good. The dosage reduced as the time goes by. I take only 5mg a day with other supplement. Dont worry to take it before it gets worst.

At the beginning of taking this,you feel very hungry, tired and some muscle pain but it is transitional and you will overcome it soon.
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Old 07-16-2003, 11:29 AM   #3
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Hi Smallpig,
Thanks for responding and for the advice. I'm glad it's working for you and that your doing better. You said there's an increase in your appetite at first...then does that decrease as time goes by and may I ask if you have gained weight since you've been on it for over a year? Thanks again.

 
Old 07-16-2003, 11:56 AM   #4
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I have taken pred in the past 4 asthma and I can tell u about my experiences with it. It increased my appetite and made me very hyper. My house was never so clean! I also talked very fast and couldnt concentrate on anything 4 too long. My husband and kids said I was moody. But my dose was higher in the beginning than the one ur dr is putting u on. Most asthmatics take a high dose and then taper down to nothing in about 10 -12 days when they are having bad attacks. The only advice I can give to you is to watch what u eat. Pred tends to make u gain weight. That is something most people can agree on who have taken the med 4 any reason. Stay away from salt and limit caffeine. I drink decaf green tea when I am on it and limit myself 2 one cup of coffee in the morning. I agree with u pred is a scary drug and when u read about all the side effects it can make u not want 2 take it. But it also saves lives. Im sure ur doctor is going to monitor u and watch out 4 all the bad effects. Right now u should concentrate on getting better today. I dont know anything about ur disease and I wish I could b of more help. I wish u luck and keep us posted.

 
Old 07-16-2003, 01:15 PM   #5
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Hi BrookLynn,
Thanks for sharing your experience. I could sure use some energy... if it does me that way on such a small dosage. I really don't want to use this drug,but I guess I will try it and your right,the Dr. will be monitoring my progress.

 
Old 08-10-2003, 02:11 PM   #6
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I was on prednisone for about 4 months to help clear an allergic reaction my body had to an anti-biotic, resulting in serum sickness. This was a few months before I was diagnosed with Lupus/Sjogren's/FM. I feel as if the medication pushed me to the edge of my sanity. I barely slept, I thought of food constantly (awake & asleep) and gained about 30 pounds after just losing it! :P I cried constantly, my hands shook, and I was nervous and extemely moody. I also sweat a lot and couldn't focus on anything for long. Prednisone did ease the swelling and hives my body was suffering from for weeks (and I am so thankful), but it was a long hard road. I hope I will NEVER need that medicaion again in my life. I am careful of what I allow into my body and always triple check medications prescribed to me--the antibiotic that I was allergic to was from a Dr. I didn't know at the AcuteCare who didn't pay attention to my allergies listed, and the antibiotic wasn't one I knew or researched. I hope your experience is better than mine with the pill and I hope you are better soon from whatever it is that causes you to suffer.

D

 
Old 08-11-2003, 07:50 PM   #7
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Hi donnamama7,
Thank you for replying and I'm so sorry you had to go through all of that,I'm glad it did help you some though. I was on 40mgs of Prednisone per day and I was wired! I couldn't sleep,I had a pain in my chest and I can see why you would gain weight...I was hungry all the time too. They cut me back to 20 mgs and I could tolerate that better. I'll say one thing for the prednisone though,the short time that I was on it,I couldn't even tell that I had arthritis. He really didn't want me to stop taking it,but I was too afraid of it's side effects and I quit taking it on the 6th day. Two days after that, I was in pain again. Before it's over with,I may be forced to take it again or take something. I'm sure glad your doing better. Good luck!!

 
Old 08-29-2003, 01:48 PM   #8
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Hi I was on pred. for about six months only 5mg a day it helped with hte pain BUT.. I fell and broke my arm in May one month after being taken off pred and I am still in a cast after having surgery twice. My ortho thinks the reason my arm won't heal is the lupus combined with pred. Please be careful. God Bless

 
Old 08-29-2003, 03:13 PM   #9
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Hi there! I've been on prednisone for the last 15 years since I've been diagnosed with lupus. The dose has ranged from 60mg/day to 5mg/day. (currently on 10mg/day) As far as side effects go... I've only experienced the weight gain and "chubby cheeks" at about 20mg/day or higher. It definitely helps with the arthritis symptoms and even now if I miss a dose in the morning I'll know it by early afternoon. I tend to get very irritable, headaches, extremely tired and a bit shaky at times. Once I take the dose I'm fine. I guess after that many years I'm a bit dependant on it. My doc has put me on Fosamax (osteoporosis med) for the long term side effects such as bone loss. Other than that I don't have anything bad to say about the prednisone.

 
Old 08-29-2003, 08:11 PM   #10
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I was diagnosed with lupus in oct 2002 with lupus nephritis but have had symptoms since may 2001. I started with 15 mg of prednisone and it improved my protien spillage so my dose was cut. Then he started me on 10 mg prednisone and 10 mg of monopril. I learned on my next visit 3 months later that the protien had went back up so my nephrologist refered me to another nephrologist from st louis that specializes in lupus. I met with him last week and he took a more aggressive approach. I will be starting a 2 year program of cytoxin (a chemotherapy drug)I. V. and a high dose of predinsone. He told me that a 13 year study of lupus patient spilling 5g of protien will only have a 10% success rate after 15yrs on prednisone only. Those who took high dose of pred. and I.V. cytoxin for a 2 year period had a 90% success rate for the same time. I begin treatments in2-3 weeks

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Old 08-29-2003, 08:49 PM   #11
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I have been off and on steriods for a while now.. Sometimes I am ok with them, other times , they make me cry , angry, depressed.. and just plain mad at the world..
the weight gain is the worst.. ...

To the person in the previous post.... about the cytoxin..

I too was on that for 6 months thru IV, and then by mouth for another year.. My doctors switched me to cellcept , and will have to now monitor me over the next couple of years, because ... the cytoxin can cause bladder cancer..

Since you havnt started it yet, check with your doctor to see if this is the absoulute last resort.. or if there is another med you can try , like imuran, or cellcept..

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Old 08-29-2003, 09:21 PM   #12
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to the previous reply. Why did you go off of I.V. for cytoxin after 6 mo. Also did you have to take lupro or depo injections to protect you ovaries?
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Old 09-02-2003, 08:56 PM   #13
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<< RE: to the previous reply. Why did you go off of I.V. for cytoxin after 6 mo. Also did you have to take lupro or depo injections to protect you ovaries?>>

My body couldnt tolerate it, it made me miserable sick, and I was unable to eat. Because of the known side affects and the potiential to cause cancer ,my doctors and I Discussed before hand the the plan would only be for 6 months instead of the year...

When you do start, make sure your are drinking lots of water.. to flush out your bladder so the meds dont stay in your body for a long time..

As far as it making you sterile.. I didnt have to worry about that aspect.. I have 4 children and so I decided to get a tubal after the last 2 (twins) were born..

quick question.... did anyone's lupus come about after having children??

I had alot of problems carrying the twins.. and was on alot of sulfur meds to stop contractions...

Less than 6 months after having them , I started showing symptoms of lupus... What i am told is maybe I always had it and it was laying dormant.. and the Sulfur meds brought it out.. Since people with lupus should never take meds with sulfur in them..


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Old 09-04-2003, 01:47 PM   #14
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I am an 18 year old woman who was diagnosed with Lupus in '98. I began a high dosage of prednisone, 60 mg. per day. I puffed up like a balloon, and became very jittery. I had a horrible reaction to the high dosage of medication and was in the hospital for 6 weeks. Since then I have reduced my predisone to 11mg and I am handling it quite well. But, after being on a high dosage for so long, I began to have trouble with my kidneys and now my liver enzymes are high. The immediate comfort is good but the long term side effects are killer.
In regards to the other drugs mentioned... I have taken cytoxin--dangerous side effects, and I had a counter productive reaction to the Cell Cept. I looking to learn more about the drug methaltrexate (spelling?). If you have any info about this drug and your reaction to it, please respond.

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Old 09-04-2003, 05:40 PM   #15
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TO MRSTHUMB:

How often will you be recieving your cytoxan treatments? I had once/monthly for 6 months and then every 3 months for a year. I've got 3 more visits over the next 9 months to go. They had me on 500 mg each time and that I could tolerate. It was when they tried 750mg that it made me really sick. I was even on on Imuran at the same time until my white count got too low. This is the 2nd time I've been given cytoxan treatments. (well 3rd if you count a one shot high dose during a hospital stay) Good luck with your treatments.

I was wondering to anyone else that has had cytoxan...Or lupus nephritis... Has anyone had any other problems with their kidneys such as large kidney stones? Does anyone know if Os-cal, Fosamax or the cytoxan treatments can cause them? I just found out I need surgery to remove one very large one and I was told that I still have a lot of big ones still in my kidneys.

 
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