Posted 9/1/2014 4:35 PM (GMT -7)
I have an answer for your 2012 problem coming off of prednisone. Hope that 2014 isn't too late . . . I hope you're doing much better by now, but just in case, here goes:
I had ridiculous problems coming off it (prednisone) four times now; in 2010 after 2 heavy rounds of prednisone, in 2011 we first tried the 'pred' again, then moved onto a really fun drug called deximethasone - truly a delight! I highly recommend it if you want to jump off a bridge but think that of course you'll still survive & then visit all of your nephews, nieces - the whole family. Most amazingly - odd how few doctors monitor their patients they put on this drug. The first week is fantastic! I felt like I could right the great crime novel - though I'm not a writer - then the weening started. My inflammation was definitely gone . . . but then again, so was my mind. Did you know that the feeling of love, or God or what we deem as sanity is just a chemical response in the brain??? You would if you tried this stuff. It's been noted that some of the greatest literary authors created their greatest works during time on 'dex' - only to fall to pieces in the aftermath.
Anyway, back to you - it takes time but your adrenals could have 'fatigue' and probably do, and may be the size of shrivelled up grapes after what they've been through. If you're still unable to cope, are depressed, feel stressed easily, can't bare coping with sad news, books or just can't focus still - then you're still in unfortunate territory. And yes - you do need to get off the steroids as they will kill a person - whether through alcohol addiction or some other type of addiction that people take to mediate the 'emotional' pain (this is actually hormonal imbalance, but we identify it as being moody - a bit of a joke because I didn't feel moody, I felt like ripping heads off and as an estrogen bearing human, that's just a bit much to cope with. We may joke about how angry we get at men at times, as women, but we don't feel aggressive rage normally. That's the drug - that's the really super scary part of the drug. Plus there's all that chatting to oneself - and don't tell me that you haven't identified with all those people living on 'skid-row' walking around taking-yelling-nonsensically phylosophizing to themselves. Yes? No worries - I can't admit it to others - but me too. We're still pretty close-minded about mental illness up here in the Great White North - but that's mostly due to a lack of social education. I'm hoping that a few rheumatoid arthritis patients can change that thinking - in time.)
Here it is - give this a try and don't go off it - unless you want to test it's effectiveness, in which I would suggest stay the course for 3 full months. take everything in the morning but please note where I have said otherwise (electrolytes & ALA / Acidophillus combo) You'll feel blips of sanity, blips of sexuality, you'll know your hormones are being effectively produced for your body type & size when you feel a normal healthy sex drive - but not overt - and you should exercise it whether on your own or with your partner (where there's blood flow, things get better. As they say "use it or lose it" - but please, only do this with a partner who is willing - otherwise on your own will do.) Whatever you do - don't go off the mineral combo. I have this from a female gynaecologist, for women going into peri-menopause, but the reason it works is because it helps the adrenals recover from overt stress and 'adrenal fatigue' - which makes a person chronically tired. For myself, now I feel great and along with a careful moderate-carb diet and healthy fats, proteins, fruits & veggies & mega exercise - I'm good now. But it did take 2 full years to recover after my 80mg triple set of dosages of prednisone then deximethasone.
Ready? Here's the Adrenal Support formula:
Minerals:(take these in the morning after you've eaten breakfast as they can be hard on the tummy otherwise)
50mg Zinc Citrate
Iodine (trace - can be found in dried seaweed or Atlantic Sea Kelp tablets)
Don't exceed these amounts as we all only require trace amounts to be healthy - overt amounts can and will cause damage. Minerals are such that our bodies require them to function properly - but with your ulcerative colitis, you probably haven't been absorbing nutrients and minerals effectively for years.
I would also suggest ordering online a great little book about non-inflammatory foods - as you're stuffing food into your tummy daily and need to gain nutrients not lose them. You may wish also to take in an electrolyte drink (for the time being something w/o sugars or fake sugars - there are tablets out there that you can take midday and during exercise with lots of water. I use 'Scratch' raspberry drink when I cycle - but last year couldn't drink it because my tummy was still inflamming too easily from it.) The Book: Meals that Heal by Julie Daniluk is a good place to start & she offers recipes & a very strong understanding of inflammatory diseases.
To help your oxidative problems & support your immune system:
3 x 100mg tablets prior to each meal - alpha lipoic acid (ALA) - common garden variety is fine - you don't need expensive stuff;
3 x 6 billion iu tablets " " " " - acidophillus
then eat - 3 times a day - good nutritious foods + 2-3 snacks & only fatty Greek yoghurt late at night with no sugars or flavouring - this will help you sleep. Avoid Omega-6 fatty acids found in corn fed beef and (grass fed has Omega-3 fatty acids - these are good for you.) Avoid corn, OMG - just stay away from the stuff plus any and all corn products, chemicals in deodorants - you name it - that and soy. Give your body a rest from these two very effective inflammatory foods.
Vit C - 500mg
Vit D - 1000iu - 4000iu daily (summertime: 1000mg; winter - 4000mg; spring & fall 2000mg - unless you live in the southern US and get lots of regular sunlight. I live in Canada - vitamin D levels are a big problem up here due to considerably less sunlight 9 months out of the year. Also, if you have darker skin, you should take larger amounts simply due to the suns lower capacity to penetrate your bodies natural protective pigmentation. In Vancouver we see a lot of people from India sitting outside for an hour in the light in fall & winter. Seems odd - but their doctors prescribe it because so many acquire rickets due to low vitamin D - a hormone - in the blood.)
Vit E 400iu
Vit B50 - will help moderate depressed feelings (though overtime you will find you can control the flash point where your head ventures that neurological pathway from 'A to nasty B' and mitigate it by shorting it at 'A' - then heading it off to positive C or D, E, F, etc - instead. The goal is to present a more positive alternative for your brain to create a strong dug-in neuro-pathway in place of the negative/depression one it's accustomed to. If you have colitis - I understand this is also your symptom -that's why I mention it.)
Halibut liver oil softgel - (contains: Vit A 5000iu & Vit D 400iu)
Co-Q10 - 100mg
some type of Omega-3 fatty acid soft gel - 1000mg
minerals to add:
Magnesium Citrate - 150mg (helps moderate chemical depression)
Calcium/Magnesium Krebs Cycle - 333/167mg tablet (helps moderate muscle function. Too little & your heart stops; too much and you get calcium deposits & other painful problems.)
Have your doctor check your testosterone levels. After a few months of the adrenal mineral therapy these testosterone levels should naturally increase. But being that you're body is under stress, please have a number for the beginning, 3rd month, 6th month, 1 year, etc - that way you can see how or if this solution is measurably helping you. BTW - testosterone in women is made in the adrenal cortex.
***If you have the electrolyte drink or tablet - take it midday day or when you're exerting yourself - cycling for example is a great way to repair the body and overtime you can build up from 10miles to 50 miles/day. But you should try to do this - as it will help your body repair faster so that you can see the effects of what you're trying to achieve faster as well. And always have an electrolyte drink or tablets at the beginning and midway through a sweaty ride - never wait for the end to replenish - you'll 'bonk'.
Where these Ideas come from:
This is all based on my own experience and testing several things that both worked & didn't. The Zinc + Selenium + Iodine formula was a life saver. I was in such pain, loosing loads of weight & was totally fatigued and had an odd yellow tanned appearance in the middle of December 3 years ago (it should be noted that by Dec 21st - we have no sunlight after 3:30pm up here). I could barely move from all the drugs my specialist gave me for an arthritic condition in my eye called Iritis - I'm certain you're familiar with this. Now I finally have a diagnosis of Reactive Arthritis (but I'm pretty certain it's the same Ankylosing Spondylitis that my grandmother was crippled by) - and with all the cycling and exercise I get, I feel great. The only drug I use daily (if) is a single 400mg IB Profen in the morning; when I need it, 2 or 3 if I haven't exercised for a week - but that's only if I've been painting walls for someone or working in a way that causes stiffening - and that's rare now - I keep moving to avoid stiffening up. If I don't manage my diet and exercise daily, I use a cane to walk or get out of bed in the morning, can barely sleep at night due to pain & limbs falling asleep, and have eye, shoulder, neck, hip, jaw, hearing, knee, achilles, hands, thumbs, large toe pseudo gout . . . . oh! and you'll like this - hemarroids with digestive tract mega-irritation. I was at a point there 3 years ago where I could eat only butter, eggs, green leafy vegetables and saltines. Even soup broth inflated in my gut.
Speaking of guts inflating like blow-fish . . . avoid all corn & corn products (there's about 45) and soy. I can't really emphasize this enough. Just trust me on this and give it a good strong effort for 3-6 months - it may be enough to dis-inflame most of your gut troubles (and yes - oddly enough - IB Profen is a drug derived from corn, but it works.)
As for my adrenal problems post 'pred'? When I saw my GP - she wouldn't touch me - there I was admitting in her office that I was suicidal several times over, I was in tears, I had to write a script for the things I needed to say because I had no memory left, and my ability to focus was nil. I was starting to wonder how the hell I was going to make a living and worse yet - due to all the unfortunate changes to the Canadian Medical system since our most recent Prime Minister - no financial support (but I did get to see several specialists who almost killed me with drugs that I couldn't afford - so that was fun.) One interesting note - that GP? Her husband was a noted psychiatrist whom she never referred me to. I've since changed doctors.
Look if you have any questions about my suggestion - just ask.
I've rode my bike all over the place since then - have a great guy who is generous to take me on bike trips when he goes & I have to say - it's been a long, hard haul - but climbing volcanos and mountain passes are easier than managing rheumatoid arthritis of any type - especially with all the ridiculous and expensive non-solutions the doctors have been offering for over 40 years now. Least to say - none are a cure. No wonder? . . . . who at $350,000+ a year ever thinks that they've got it wrong? their solution to take the steam out of the immune system is so widely assumed a near-cure, what chance do we have as patients if they keep trying to further damage us with Rx treatments that may be hindering further our case??
From my experiments the prednisone caused further disease - as well as the anti-malarial, anti-biotic, and God only knows what else I used - there's a list somewhere in my papers.
Second to that, and just as important: - these diseases appear to be part metabolic, part genetic-pathology, part adrenal & part dietary. So really it's just a matter of complexity & the effort to experiment in a speeded-up host that's useful to find a solution.
BTW - stay away from any type of alcohol & caffeine for awhile until you're well-healed (easily a full 18+ months). All are bad but the issue is more so that one is a carcinogens and the other raises blood sugar, and you have an challenged immune system that has troubles with sugars.
OK - best of luck - let me know how it goes.