PredniSONE Autoimmune Hepatitis, Aih, Flare, Hepatitis, Depression
Posted over a year ago
I have been on prednisone since I was two years old (I am now sixteen) because I have Autoimmune Hepatitis IIa. I would like to point out that there is still a life worth living being on prednisone, maybe I say this because I do not know life without it, ... more »
I have been on prednisone since I was two years old (I am now sixteen) because I have Autoimmune Hepatitis IIa. I would like to point out that there is still a life worth living being on prednisone, maybe I say this because I do not know life without it, but at least we're alive! Last year I had a flare up of the AIH and had to 6x my dose of prednisone. It sent me into a spiraling depression of constant sleep, crying, hopelessness etc....but I made it through. Just PLEASE keep hope that things would get better, because I know what it's like being on the dreaded drug better than most.
Propsguy - 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
Xxanonymousxx - 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 -_-).
Xxanonymousxx - 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...
Xxanonymousxx - 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
Xxanonymousxx - 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.
Dima82 - 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.
Libertymouse - 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.
Brooklyn1954 - I was diagnosed with auto immune hepatitis, last June, my liver enzymes were 1039, i am surprised, i am was not hospitlized , since it was drug induced the drs thought it would reverse itself. However it did not, my eyes were getting yellow, and than i went back to another dr. he put me on prednisone, that alone did not work, i went on aziatpriozine. I became very ill, i had stomach pain, and vomitting, i was than put on mexotrexate, every day, which i thought was alot, i have had hair loss, blurred vision, a chipmunk face, edema in the legs, cramping, my skin texture changed i get these little warts, all over, very bad leg cramping and pain, bruises that took a long while to go away, also got diabetis. Every time they tell me to reduce my prednisone, i flare and it is usually between 10 to 5 mgs. I just took a liver biopsy, i have alot of inflammtion, and i have alot of damaged to the liver considered stage 4. No i am starting cellcept, with prednisone 20 mgs. Makes you very disgusted. I will be buying the cod liver oil, i am 57, yrs old, this has been a nitemare. It all started with rescuing a dog, he bite me and i went on Avelox medication, with all the other meds i took and it set my enzymes off the roof. I am thinking of trying a natural approach. Because ultimately what happens when all else fails, you need to get a transplant, Does anyone know if there is a cutoff point for a transplant?
Brooklyn1954 - I was diagnosed with auto immune hepatitis, last June, my liver enzymes were 1039, i am surprised, i am was not hospitlized , since it was drug induced the drs thought it would reverse itself. However it did not, my eyes were getting yellow, and than i went back to another dr. he put me on prednisone, that alone did not work, i went on aziatpriozine. I became very ill, i had stomach pain, and vomitting, i was than put on mexotrexate, every day, which i thought was alot, i have had hair loss, blurred vision, a chipmunk face, edema in the legs, cramping, my skin texture changed i get these little warts, all over, very bad leg cramping and pain, bruises that took a long while to go away, also got diabetis. Every time they tell me to reduce my prednisone, i flare and it is usually between 10 to 5 mgs. I just took a liver biopsy, i have alot of inflammtion, and i have alot of damaged to the liver considered stage 4. No i am starting cellcept, with prednisone 20 mgs. Makes you very disgusted. I will be buying the cod liver oil, i am 57, yrs old, this has been a nitemare. It all started with rescuing a dog, he bite me and i went on Avelox medication, with all the other meds i took and it set my enzymes off the roof. I am thinking of trying a natural approach. Because ultimately what happens when all else fails, you need to get a transplant, Does anyone know if there is a cutoff point for a transplant?
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