I have been on prednisone since I was two years old (I am now six...

wow! you are too young for this. over time, prednisone will do a lot oa damage that won't show up until you are older.
right now, i am on high dose prednisone (60 mg) for a kidney thing but i take a slew of alternative medicines, vitamins to counteract the damages and i have to say, i have NO side effects whatsoever- no weight gain, no moon face, no bruising, no aches or pains, no depression, my glucose levels are fine. and my kidney issue resolved in record time (the doctor was shocked) and i'm now starting to wean off the prednisone.
the first thing i would do if i were you is start taking omega 3 fish oil (Carlson is a great brand). it's a natural anti-inflammatory and most americans don't get enough of it in their lousy processed diets, which is why we fall prey to so many inflammatory diseases to begin with. right now i take 10 teaspoons a day and that, combined with the prednisone is why my inflammation got better so fast.
its also made my skin incredibly soft and smooth and people are telling me that i look better than i did before i got the kidney problem. even the bottoms of my feet and my elbows have gotten luscious! and i talked to a friend who takes it and his joint pain and arthitis went bye bye.
i also use natural progesterone cream in addition to vitamin D and calcium to stimulate bone growth (instead of fosmoax)
i take rhizonate (a licorice supplement) and digestive enzymes before meals to protect my stomach lining from the prednisone (instead of prilosec)
and i take 50 mg of pregnenolone, a precursor hormone so that my body will use it to make its own hormones as needed. one of the ways prednisone messes you up is by suppressing the body's ability to make its hormones and since i am past menopause, it could wipe out what little i have. so between the progesterone cream and the pregnenolone, i should be ok.
lots of B vitamins, sunshine everyday and good organic non-processed food
but i think the key ingredient is the fish oil. it helped take the inflammation down so fast that i won't be on prednisone for as long as most people with this condition. normally, you start to wean off the high dose after 2 months but we are starting to wean me after one month.
and really, people stop me on the street to tell me that i'm glowing. i think it helps with so many things- depression, pain, stiffness, skin, hair, eyes.
and it has 40 calories a teaspoon but taking 400 extra calories a day of oure oil has not put an ounce on me. and it should raise my HDL cholesterol
so please, please, i can't over praise it enough. start taking it and see what happens. see if your problem gets less servere or less frequent, if you can get away with less prednisone less often. i know you said you still have a life but i believe you can have (and deserve) a better one

Hi, the propsguy is absolutely right about supplements -- they do help indeed. Even though corticosteroids are occasionally needed and may be life-saving, their side effects are many and far-reaching especially when used long-term. I'd suggest that you consider supplements, and perhaps, ask your health care team for something other than prednisone. In addition, you may consider taking the following steps to help your body to normalize the immune system:

Increase (as propsguy suggested) omega-3 fats intake.
Optimize your blood vitamin D levels (ask your physician to order the 25(OH)D test) -- it should be (ideally) between 50 and 65ng/ml -- and the majority of people are deficient.

Good luck!

I want to thank you so much for the replies....my parents worry about me mostly with calcium because the doctors said I would be in a wheel chair by the time I was thirty without a lot of it. They also worry about vitamin D because i am deficient, but not so much the other stuff. Propsguy, do you think you could tell me exactly each supplement you take? I got a little confused (sorry, comprehension issues -_-).

Also, is the progesterone hormone similar to birth control? I was wondering because my doctor said that I shouldn't take birth control (containing estrogen) because of the liver disease BUT i wanted to start taking it to help with acne...

Hi, well, supplementing only the Ca is not very helpful -- there're at least 18 nutrients that are essential for bone health -- vitamins E, D, C, B12, K, folic acid, and minerals including magnesium, calcium, boron, copper, and zinc are needed for optimal bone health. As a minimum, I'd suggest that you take high-quality, pro-strength, balanced multi-vitamin-mineral complex. For example, Douglas Labs makes great ones called the "Ultra Preventive X", and the "Ultra Preventive III." I absolutely agree with Propsguy, Carlson makes high-quality products, and their liquid Fish Liver Oil is great, and contains optimal amounts of Omega-3. As for the acne problem -- corticosteroids may also be responsible for that, and therefore, I'd suggest that you seek a 2nd opinion regarding Prednisone (ask for an alternative) and progesterone. Good luck!

progesterone cream is a bioidentical hormone that your skin absorbs and your body recognizes it as progesterone. it is not birth control or the synthetic hormones that are used in birth control. it is sure as hell not estrogen. in fact, it opposes estrogen, which is why so many women got so messed up with cancer, etc from taking unopposed synthetic estrogen as birth control and in chemical toxins.
one of the things progesterone does in the body is stimulates bone growth. prednisone causes bone damage. drugs like fosomax slow bone remodeling; they slow bone loss but do nothing to stimulate bone growth.
a healthy skeleton depends on the replacement of old weak bone with new strong bone. simply preventing bone loss, as the drugs do, causes you to end up with an older, weaker skeleton, which is what recent research has finally showed, although common sense always knew that.
so they now suggest that long term use of osteoporosis drugs does not prevent fractures and might even encourage them
the reason to use progesterone cream with prednisone is to keep that skeleton rebuilding

Thank you so much for the help, sorry for all the most-likely-obvious questions of mine. I just want to make sure I get all the facts (from real people and not just statistics) because I do have a liver disease, and since everything goes through the liver, I don't want to damage it and cause cirrohsis. I think I will definately start taking the supplements though because if I don't I KNOW i will have a lot of problems later. I also happen to be the youngest person to be diagnosed with Autoimmune Hepatitis (type 2) so there is absolutely no evidence of what could happen long term because of the disease or medicine.

Also, I cannot get off the prednisone(Ohhhh have I tried, especially when I had to take the red, syrupy *AWFUL* tasting liquid form up until I was 10). I take prednisone combined with azothioprine (imuran) to lessen the dose, but to treat Autoimmue Hepatitis imuran doesn't work alone. There is no reliable alternative to prednisone, just prednisolone (a similar steroid) if people are resistant to prednisone, which I fortunately am not. Also, AIH is very rare affecting ~1,300 americans (and I am 1 of ~200 with type II) so I am not sure if there will be an alternative in the near future.

I feel very fortunate that you all are helping me, though, because you are most likely prolonging my life! <3

You sound so sweet. Best of luck, you are in my prayers.

i'm not suggesting that you get off prednisone, maybe just be able to cut down your need of it, maybe get away with less dosage less often. please try carlson's fish oil (not cod liver oil). any natural anti-inflammatory you can take will lessen your need for synthetic anti-inflammatories.
you say "there is no reliable alternative to prednisone, just prednisolone" but what you really mean is that there is no patented medical pharmaceutical alternative. that doesn't mean that there aren't other ways to deal with it, just not ways recognized by the western medical establishment, which let's face it, despite what they may like to think, really doesn't know all that much about health.
the same with your condition- it may be rare and therefore not accorded the big bucks research of some other diseases but that doesn't mean that there isn't some folk remedy or tribal medicine that has been used successfully for hundreds or thousands of years that has been over looked by modern man
when i was having NS, my african friend told me that in his village on the ivory coast, NS is very easily treated in a few days by the village medicine woman with traditional remedies. i told him if i ever get this condition again, i have having him take me to his village!
so please don't listen to people who say there is no treatment or cure. what they mean is only that there is no treatment or cure that they have been able to imagine or discover

For the liver health I'd suggest the following supplements -- they're inexpensive and available at almost any health store:
1. Alpha-lipoic acid (ALA) -- 400mg/d
2. Phosphatidylcholine -- choose formulas that say "triple-strength" -- here's a good example:
http://www.vitacost.com/Jarrow-Formulas-Mega-PC-35

3. Carlson Fish Liver Oil -- make sure it is a fish liver oil (vitamins A & D free), this is important, because excessive amounts of the Vitamin A in cod liver oil can harm liver. Here's the link to the fish oil:
http://www.vitacost.com/Carlson-The-Very-Finest-Fish-Oil-6-7-fl-oz

Once again thank you guys, I hope other people are reading this too for tips that can help them manage being on prednisone. I was being ignorant in saying there is no reliable alternative, just know "known" one. I have been trying to find holistic remedies but I would be scared completely going off the prednisone and have another flare up. I definately am going to ask my mom about getting me the fish oil and other stuff even though what I have checked out is relatively expensive (I only checked out Vitamin Shoppe) x_X Once again thanks soooo much you all have been very helpful.

Hi, you're right -- professional brands are relatively expensive -- good multivitamins cost at least $15 per month. Here's a good, all-around multi-vitamin formula:

http://www.douglaslabs.com/product.cfm?litm=7564C-180X

You could show its ingredients to your health-care team, if you'd like. Professional brands (usually) are not available at places like the Vitaminshoppe, but you could easily get them online -- search through Google for the cheapest price. You could get the Phosphatidylcholine (PS), ALA, and Carlson labs' fish oil at the Vitaminshoppe.

My dad has been on presnisone for almost 35 years for severe asthma. Has never had weight gain, moon face, etc. His only side effect is thinning of the skin and bruising easily, so he is careful. He is 88 and still going strong. I had a severe (and I mean severe) rash reaction to iodine dye several years ago from a CT scan and had the worst rash you'd ever seen. So I was on Presdnisone for about two months. Completely got rid of the rash and I would never hesitate to have to take it again. It is a lifesaver for some people, but I know everyone reacts differently. I am allergic to many, many drugs, but if Prednisone works for you and helps you live a better life, don't be afraid of it.