Sle symptoms and conditions

Hey Guys,
I'm new to all this but just wanted to share my story with everyone so I feel like i'm not so alone! I'm 23 and was diagnosed with SLE 3 years ago.
It started in my joints and then moved to my kidney's real fast. I now have stage 4 nephritis, finished 6months of cyclophosphamide in Feb and have been on no less than 40-20mg of pred for about 2years. Just when things were starting to look better it has stared in my blood so they are trying to up my dose again. It has thinned my bones so I am on special meds for that now too.
I know taking the pred is something I need to do to live but it comes at a really high price. I don't even look like the same person I used too because of the moon face. I know it's shallow but at 23 it is almost as bad as having to live with this disease. I now have really low self esteem and get anxious all the time, which is affecting my job. As much as I want to come off I also worry that I would have to stop work again as the pred is what keeps me going. All I want to do is get off it though! Anyone know any alternatives? Also, just wondering if you guys are still drinking alcohol while taking pred?
Thanks for listening guys!

I was diagnosed with SLE (lupus) when I was 14, I'm 21 now, and I've had to be on prednisone all this while. The dosages alternate between 60mg (the highest) and 2.5mg (the lowest), I just went for a routine check up today and found out that my protein level in my urine is at an all time high. So the doctor is pushing me back up to 30mg of prednisone. Its 2 am, and I am sitting in bed crying because I don't want to have to go through everything again; the weight gain, the moon-face, everything. I know I may sound shallow, because ultimately, the medicine is keeping me alive, but the side effects are terrible. Very few people understand that its not fat that you're gaining, and the remarks that I know I am going to get are enough to drive me insane.Is there anyway the water retention or the weight gain can be stopped or decreased?

I did a post a few days ago--but must add to it. I have SLE, MS, CAD, HBP, having 5 stents, asoteoporosis, arachnoiditis, cerebritis/vasculitis from lupus, chronic pain(fibramyalgia) and a bucn more that ill give u sum idea. I am also a RN for28 years and KNOW what medications can do. I mena come on lets face it--if we ALL read THOROUGHLY all the inserts with ANY medication--NONE of us wud take any of it. Even ADVIL and ASA have horrific side effect.!! I saw my doctor yesterday afternoon due to this rash--not my typical lupus reash---doesn't look like discoid lupus, it begins on my chest goes uop my face then all down my back then gradually works its way down my leg---it gets rasm, macular and some some end up with a popular looking area. The PAIN from if is almost as bad as the itch from the rash. I have had shingles and it is similar to that pain. I have been putting topical steroid base creams all over to no avail. I begged my doctor for the KENOLOG shot and discussed GREATLY the side effects: I have had a hysterectomy so that is nothing, it cause cause a psychosis, depression, panic racing thots insomnia--basically ALL the side effects everyone has mentioned---but IT WORKS -I JUST GOT UP AND THIS DIFFIGURING DISCUSTING RASH ALL OVER IS ALMOST 90% GONE!!!! Like I said I have been on steroids most of my life--and I KNOW the side effects of them--PERIOD. Educated patients READ the inserts and ask their doctors---all meds have risks but the questio is does the risk outweigh the benefit t
??????????? I am on a mediation that has you with an increase of 10-15% increase of having an heart attack--which I have had two--but I CHOOSE to take it becuz the benefit outweighs the risks. I understand 100% all the complaints concerns and everything, attorneys will NOT take cases where the medication is used and adminierted the correct way--esp. when the side effects are clearly listed. Doctors are TOO freaking bust these days to sit and TALK and explain every side effect with each of their patients. Does each of you know that the average physician HAS TO SEE at least 60---yes sixty patients A DAY???? That is actually in their contract--thata approximately 7 and a half minutes ith each of us.!!!!!!! Make a list of all ur concerns, questions etc for the doctor and I do this ---I manuaver my chair to in feonrt of the door and I DO NOT LT THE DOCTOR OUT until he has answered ALL my concerns---yea they get mad tell me I can't do that--and my response is is IF YOU can make me wait in ur office lobby for more than an hour--I will do what I have to do to get proper CARE!!! Shuts most of them up. But I am lucky I do have 6 of the most careling and compassionate physicians--I have lucked up--I have had my share of "stupid" doctors but-hey WE are the patient-=-go to another one until ya get one ya like. If you go to other website about medicine there are many more complaints and unhappy patients with medications they take. But I understand where all of US are coming from---Doctors are no different than us--and they are not GOD--they make mistakes and as long as they don't KNOWING harm you---or commit fraud--no lawsuit happening---now sueing the MAKER of kenalog MAY be a possibility( my sisiter is an attorny) thats her advice and itd have to be a class action suit and its kinda sad--patients don't ever get much in things like this but its worth a shot!!!

I have taken predisone for 15 years ranging from 120mg to 10mg. I also take 2000mg of cellcept, 400mg og plaquinel, 1000mg metforin, 10mg zeita, 130mg antera,60mg cymbalta, land lyrica., Foreto Injections (for osteoprosis, due to predisone). In the beginning I gained alot of weight and became depressed and very angry. I have Systemic Lupus Erythomous (SLE), I also do self catherization. I have found over the years to stay away from suger, salt and fat. It is very hard because as you know predisone can make you want to eat all of the time. I get headaches and alot of infections, but the alternative is death. Predisone is a very good drug and a very bad drug, but it really does work if it depends on your life.

Wow. To all the valid contributors and site owners, top posts and site!

I have SLE and have been found to have Lupus Nephritis (kidney). I was on 60mg, now down to 40mg of Prednisone.

After Pericarditis, I presented with terrible SLE headaches. I'm now also on Cyclophosphamide (Chemo treatment) for my Kidney and other meds for that, as well as the Prednisone, but my side effect I am having which I think is from the Prednisone is SWELLING in the face some, but especially from knees downwards getting worse throughout the day.

After reading a bunch of pages here, I suspect that it could also be not just the Prednisone but because my Kidney functioning poorly. I can't get rid of the water fast enough. I do not have anything diuretic normally because I am also diagnosed with Raynauds Phenomenon.

To balance things out, I've tried to drink the minimum side (2L for 2 days after Cyclophosphamide treatment) and funnily enough, if I have drank too much water in the day time I:
*Sleep with a big pillow under my knees/feet
*Do not drink any at night (if thirst, just have a half mouthful)
*Wee it all out throughout the night

It HAS worked and my weight, the swelling in my legs/feet has come down dramatically... It has also helped my FACE be less swollen and puffy...!

Other symptoms I had when I had prednisone only: EMOTIONAL! Twice I could not stop crying when there was completely nothing wrong with me at all (i.e. bawling my eyes out). At the time I was on 20mg when my SLE was quite much lower in activity level. I was totally "off my head".

Now I'm on 40mg, and I do get emotional more easily - but I brought the husband to my specialist once so he could get side effects explained to him directly. I also get hot flush tingles in my fingers and toes from prednisone.

For all those people worried about WEIGHT - I highly recommend one of those scales (I know I can get one for $40AUD) which can tell you your WATER level as well as weight (you have to input your height). If you are running at 70% instead of 60% water, then you know your weight is 10% overstated, but just due to the water.

meow

i take it for SLE too....and depression is starting to hit me too. I was crying for two days in a row and my boyfriend thought i was going crazy coz i was screaming at him for no real reason. i think its driving him up the wall coz he doesn't seem to understnad what is going on with me. Till yesterday i was feeling like nothing could comfort me and today i feel like the sun couln't be brighter.

Profound Depression is my main concern and I have suffered through it each time I've been on Prednisone, I take it for SLE. Does this happen to alot of people, or is it all in "my head" as my GP suggested

I have now got the incurable illness of SLE after being prescribed minocin for acne.