HealingWell
Search Close Search
☰

Tried DHEA for Prednisone taper and had some VERY surprising results - CURED?!

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/28/2016 2:18 PM (GMT 0)
EDIT: Until further notice do not take DHEA. Jump down to the end of the thread for more detail.

Yes - CURED. I've posted before about my attempts to cure myself including a DIY fecal transplant and Bupoprion therapy but I've never experienced anything like this.

Diagnosed with severe UC in the fall of 1986 and I've never been off Prednisone although once I was stable at 5mg. The last five years have been a slow slide towards the cliff. In 2012 my colonoscopy found massive pseudopolyposis in my ascending and descending colon. My docs strongly recommended a colectomy but my intuition kept nagging that surgery was the wrong choice. Last fall I had an infected diverticuli that landed me in the hospital and then I had a blood clot while recovering. All last year I was fighting with my incompetent and lying GI docs because they didn't want to deal with a "stubborn" patient who didn't think they walked on water.

But I digress...

Six weeks ago I was on 30mg and felt stable enough to drop to 25mg. It was OK at first but the inevitable nausea and misery soon was upon me. I was sleeping 12+ hours a day and everything felt like it was moving in slow motion. Dug around for hints on how to survive Prednisone withdrawal and found a suggestion to take DHEA. Ran over to Whole Foods and grabbed a bottle of Country Life 25mg DHEA capsules.

A few days of taking one capsule a day netted minor improvements in sleep and energy but nothing major. A few weeks later I noticed rashes on my back and arms had disappeared. Then I realized my post-Herpetic neuralgia from a 2009 episode of Shingles was dramatically better. Less mucus in my stool and I could sleep on my right side without cramping/blood/diarrhea. The edema in my right leg from the blood clot disappeared! To top it off I went from 195lbs to 184 in less than a month. Now before everybody reading this runs over their grandmother to buy some DHEA - YMMV. I'm still taking Buproprion and my fecal transplant might had have something to do with this incredible turnaround.

I've been trying to figure out why DHEA would have such a dramatic effect on my UC. According to what I understand DHEA is a precursor for numerous important hormones so I refer to it as systemic hormone replacement therapy. As a child I was always chubby and had numerous health issues like allergies and asthma. Now I have to wonder if my hormones have always been out of whack. No doctor of any sort has looked at anything hormonal except when they were trying to treat my advanced osteoporosis with some shots.

Almost looking forward to my upcoming colonoscopy. Almost but not quite...

Post Edited (weirdal1968) : 6/3/2016 7:34:08 PM (GMT-6)

Posted 3/28/2016 2:52 PM (GMT 0)
Last time I took steroids, my condition was SO stable after tapering off, I thought I was better. I thought, maybe it was gone forever. I have thought this a lot of times over the years... It came back a few months later. Hopefully you're really "cured". Be aware, UC is chronic and not having symptoms doesn't mean you're cured, it means you're in remission. The UC can flare up again. A clear scope would mean remission, not cured.
Posted 3/28/2016 3:01 PM (GMT 0)
I know this all too well since I thought my fecal transplant was going to cure me but this just feels like I hit the bullseye. With the fecal transplant it was just my gut improving. With DHEA literally **EVERYTHING** that was aching, itching, bleeding or running has improved. Before I took DHEA my hip had started to ache to the point where I couldn't go on my 3 mile Sunday walks. Yesterday I power-walked all three miles. Skipped my evening dose of pain meds and slept fine.

Post Edited (weirdal1968) : 3/28/2016 9:33:46 AM (GMT-6)

Posted 3/28/2016 4:01 PM (GMT 0)
Sounds amazing! Congrats!
How much of the stuff do you take each day?
Posted 3/28/2016 4:23 PM (GMT 0)

weirdal1968 said...
I know this all too well since I thought my fecal transplant was going to cure me but this just feels like I hit the bullseye. With the fecal transplant it was just my gut improving. With DHEA literally **EVERYTHING** that was aching, itching, bleeding or running has improved. Before I took DHEA my hip had started to ache to the point where I couldn't go on my 3 mile Sunday walks. Yesterday I power-walked all three miles. Skipped my evening dose of pain meds and slept fine.

Well whatever the case, good luck & keep doing what makes you healthy :)

I notice when I was in remission all my other ailments were much better. I guess that's how it goes. When you're flaring, you're inflamed and it impacts your overall condition in many ways.
Posted 3/28/2016 4:35 PM (GMT 0)
We have all kinds of old threads on DHEA here is one,from 2015.

OM

https://www.healingwell.com/community/default.aspx?f=38&m=3502877

Posted 3/28/2016 4:49 PM (GMT 0)
Big thanks to Old Mike for the link. Very interesting stuff that seems to support my suspicion that incredible stuff falls through the cracks for disturbing reasons. www.ncbi.nlm.nih.gov/pubmed/12562454

To answer Kevin Watson's question - I'm taking 25mg of DHEA once in the morning on an empty stomach two hours after all my usual morning meds and vitamins.

My 81 year old mother has had IBS-like symptoms for years and the docs have given up trying to cure it. I suppose they figure its just old age but going to the bathroom 15+ times a day just ain't right. She has been taking 15mg/day for a week and has seen minor improvements but I'm cautious due to possible Testosterone issues.

Post Edited (weirdal1968) : 3/30/2016 5:47:52 AM (GMT-6)

Posted 4/6/2016 12:51 PM (GMT 0)
Still more improvements!

I was working at the arcade last Saturday and spotted an iPhone 6 on the floor. I pounced on it and a coworker said they had just left and were probably in the parking lot. I ran out the door through the narrow twisty corridor and caught up with them just as they were walking outside. Suddenly I realized my body no longer cornered like a cement truck and I was easily running faster than I could remember.

Last night I woke up with low blood sugar and didn't have any orange juice so I powerwalked five blocks to a convenience store and back. It took less than 20 minutes.

My stools aren't completely normal but given how much damage there is to clean up I'm not surprised. There is little or no mucus and absolutely no straining. Haven't seen any significant blood since early March.

Friends/family with various chronic diseases are VERY interested in trying DHEA for their ailments. Nobody has started taking it yet but I'm very curious whether my utterly unscientific test will help.

My older brother sent me a warning about taking DHEA and Bupoprion. Apparently combining the two can cause liver damage. I had been on 300mg of Bupoprion and 25mg of DHEA daily and saw no problems so I suspect the issue is probably with high doses of DHEA.

On a related subject - people with liver damage should not take DHEA according to what I've read. Once again I suspect this is more for high doses of DHEA but I haven't been able to confirm it. I wish I could because a cousin has Lupus/SLE for over a decade and the docs won't let her take DHEA.

Post Edited (weirdal1968) : 4/6/2016 8:47:51 AM (GMT-6)

Posted 4/6/2016 2:17 PM (GMT 0)
Interesting positive NIH study of a small group of IBD (Crohn's and UC). I wonder what happened in the follow-up study, if it ever happened? In the study linked patients were given over-the counter 200 mg of DHEA so you are being very cautious with 25 mg, perhaps your prednisone carryover is assisting in your good results.
Posted 4/6/2016 2:46 PM (GMT 0)
Looking back at all the health problems I've had in my life I can safely say that my Ulcerative Colitis should be viewed as just another result of hormonal imbalance. I was always overweight, miserable from allergies, couldn't do anything fun in gym class thanks to asthma and had a bizarre recurring abdominal pain during my teen years that the doctors dismissed.

I suspect that a combination of genetics - my father and his mother both had Crohns as well as my younger brother - and environmental endocrine disruptors cause the body to try and downregulate hormonal levels. Unfortunately the body sees those faux hormones but can't use them so the usable levels drop to unhealthy levels.

The weirdest side effect? I've been a procrastinator all my life as my always nagging mother will attest. I'm tackling stuff on the wait list that has been gathering cobwebs for ages. Apparently my procrastination was at least partially due to hormones. WIN!
Posted 4/6/2016 7:33 PM (GMT 0)
That is awesome! Hope the DHEA continues to work for the many symptoms experienced.

I been taking DHEA 25mg for awhile now, and while it has not been as helpful for me, for my MC condition, I've found it to help improve my energy. At least I suspect that to be the case. I plan to keep taking it due to that.

I haven't done the test in awhile but there is a DHEA blood test that doctors can arrange. There is also a home kit test available.
Posted 4/7/2016 9:20 AM (GMT 0)
This is interesting. In the UK the endocrinologists don't look at DHEA at all yet a lot of alternative practitioners do. I did a spit hormone test over a month a few years back that covered all major hormones and my DHEA was low but I haven't dared try it myself because I can have adverse reactions to most things that need to be synthesised by the liver. A friend of mine who had adrenal insufficiency and Hashimoto's did start taking it and she said it was amazing for no longer waking up every morning feeling "hungover".

I hope you stay well, do keep us updated.
Posted 4/7/2016 10:21 PM (GMT 0)
Hi, I am looking to purchase some DHEA. Can you tell me which brand is best? I am looking on Amazon. Thank you
Posted 4/8/2016 12:07 AM (GMT 0)
I use these
www.amazon.com/DHEA-100-Caps-Swanson-Ultra/dp/B0017O5REC?ie=UTF8&psc=1&redirect=true&ref_=oh_aui_detailpage_o03_s00
Posted 4/8/2016 12:14 AM (GMT 0)
I know I will be disappointed (ever the optimist), but I have Hashimoto's and Crohn's and I really, really feel like giving this a go now. My liver will just have to deal with it; normally it's fine anyway, but I have just started 6MP.
Posted 4/8/2016 2:47 AM (GMT 0)
I did some googling for "DHEA NIH" (Nat'l Inst. Health) and medical studies are kinda all over the map, both with dosage and results. If you take a large dose you'd do well to check your hormone levels every couple of months. Of course if you get poor symptoms or feel worse you'd quit.

One study had people take DHEA only one time in a small dose (12.5 mg) and it was enough to produce beneficial results for 4 months after, more so for women than men IIRC.
Posted 4/8/2016 1:23 PM (GMT 0)

noelhelp said...
Hi, I am looking to purchase some DHEA. Can you tell me which brand is best? I am looking on Amazon. Thank you

I use Garden Life 25mg DHEA www.amazon.com/Country-Life-DHEA-Vegetarian/dp/B001185X66

Started off with 25mg/day but just doubled it to 50mg in hopes improvements will accelerate.

I think one of the most interesting aspects of this therapy is how well it correlates IBD flares with adrenal stimuli. Societal stress from school bullies probably caused my long-term adrenal suppression. Even an exciting evening of videogames would throw me for a loop.

Sometimes caffeine was tolerable but usually only in small doses - now I can drink a 16oz gourmet coffee and get the full benefit. Before the DHEA I could sometimes drink a full cup of coffee and feel absolutely NOTHING. In hindsight that meant my adrenals were tapped out and couldn't react.

If anyone is unfamiliar with Hashimoto's disease /en.wikipedia.org/wiki/Hashimoto's_thyroiditis

Post Edited (weirdal1968) : 4/8/2016 7:47:38 AM (GMT-6)

Posted 4/8/2016 2:14 PM (GMT 0)
Having googled this stuff, I wouldn't take a high dose of it. But I'm still interested in starting off at a low dose (say, 25mg) and seeing if that makes any difference at all. Seems like it would be best to start taking it when I start tapering the Entocort though.

I can relate to a lot of what weirdal has said, and feel like my hormones are completely out of whack. If I won the lottery, the first thing I would do would be to get a sh!t load of tests done and see if any of my hunches are correct. Well, not literally the first thing but it would be high on my list.
Posted 4/20/2016 1:11 AM (GMT 0)
Yet more interesting side effects!

While I love animals I have to limit my exposure to most critters thanks to allergies. Strike that - I USED to have to limit my exposure. A week ago I visited my older brother and I decided to test my allergic response to something that I know should knock me for a loop - cat spit. One of their cats likes to lick people affectionately and that would cause my skin to break out in a rash. The cat planted numerous wet kisses on my nose and there was absolutely no reaction!

The year before I was diagnosed with Ulcerative Colitis I started getting nasty morning headaches that were somehow tied to my clicking jaw aka TMJ. Recently I've noticed the neck pain that I've learned to ignore since 1985 is GONE!!!

Yesterday I decided to walk to a nearby store for various supplies. It was an extremely sunny day and I was wearing a short sleeve shirt. Normally this would be a recipe for disaster because my skin gets irritated with any sort of significant sun exposure. I've had three Shingles outbreaks that occurred during mid/late April and I'm almost positive they were caused by sun exposure wreaking havoc on my immune system. Previously my skin would have become bright red within 30 minutes but it was barely any different than when I left. I suspect my DHEA therapy has normalized my broken Vitamin D production but I need to do more research on the subject.

On a related note my brain was playing connect-the-dots and wondered if I was the only one who thought my childhood Asthma could have been caused by low DHEA levels. I found one study but they seem to be looking at it through the wrong end of the telescope. They treated Asthma patients with DHEA and they only thought of it as a replacement for glucocorticoids. I think that in my case Asthma was CAUSED by low DHEA levels. Nowhere have I seen anything that ties together all these diseases that respond to DHEA with Adrenal dysfunction.

Calling Old Mike! Do you know of any research tying autoimmune diseases to low levels of DHEA? While I've seen individual studies noting how one disease such as MS or SLE responds to DHEA treatment I haven't seen anything that ties together this possible common thread of poor Adrenal response.

Post Edited (weirdal1968) : 4/19/2016 7:19:07 PM (GMT-6)

Posted 4/20/2016 10:25 AM (GMT 0)
You might want to look into the HPA axis.

A lot might also depend on our cholesterol levels, which tend to be low in colitis, mine are low.

Cholersterol is a building block of these hormones.

Old Mike

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1774724/

Posted 4/20/2016 9:05 PM (GMT 0)
DHEA is a steroid hormone as well as a hormone precursor for male and female sex hormones. Maybe it works well for you because it is a precursor to cortisol, therefore it could acting as a substitute for prednisone? I dunno.

As a precursor for hormones there might not be anyway to control which hormones that DHEA could be converted into. Conversion to testosterone sounds OK if I am male, but not so good if I am female. Conversion to female estrogens might not work for males.

I would consult with an endocrinologist because hormones are serious business. Get your hormones, e.g. testosterone, estrogen, cortisol, etc., levels measured and replenish levels based on your age and gender. Bioidentical hormones of course! But that is just me. Apparently DHEA is working OK for you.
Posted 4/21/2016 2:18 AM (GMT 0)
Thanks again to Old Mike! All the studies I've seen are focused on DHEA and a single disease. I had Asthma and allergies a full decade before UC reared its ugly head. Other issues like juvenile stretch marks and obesity were ignored by every doc I've seen in my life. I've had episodes where 60mg of Prednisone, 12x 500mg Sulfa pills and Cortenemas didn't control my symptoms but somehow taking 50mg of DHEA does the trick. To me this means DHEA got to the root of the problem. Is it coincidence that DHEA has successfully treated virtually every health issue I have? Is it a coincidence my UC and Asthma both got significantly worse during periods of (Adrenal) stress?

As for hand-wringing that there may be side effects - I can safely say that after nearly 30 years of UC plus another decade plus of allergies, obesity and Asthma the side effects can't be worse than my diseases that DHEA has stomped like a bug. I suspect the DHEA therapy might be healing my pseudopolyposis but I'll have to wait until my colonoscopy in early June to know for sure. It this does heal the scar tissue, DHEA is a game changer.

Post Edited (weirdal1968) : 4/20/2016 8:30:16 PM (GMT-6)

Posted 6/4/2016 1:29 AM (GMT 0)
Earlier this week I went to the ER because I was experiencing the symptoms of an intestinal blockage again. They CTed me and saw an area of inflammation - possibly cancerous - in my sigmoid colon. Haven't seen my primary yet to look things over but it isn't what they saw back in November 2016 and it could be related to the DHEA. DHEA does increase a form of IGF and some cancers have receptors for it.

Unless I report back with good news from my Monday colonoscopy do not take DHEA. If you're currently taking DHEA you should STRONGLY consider stopping.

Post Edited (weirdal1968) : 6/3/2016 8:52:34 PM (GMT-6)

Posted 6/4/2016 3:16 AM (GMT 0)
Oh weirdal, I really hope that isn't what is happening.... Best wishes for you on Monday. Let us know how it goes.
Posted 6/5/2016 7:52 PM (GMT 0)
Over the past three months that I have been taking DHEA very good things have happened. Believe it or not I'm off my pain meds and feel fine. If it is cancer chances are it was there when I started DHEA. It does have anti-cancerous properties so I may have been unknowingly treating a cancer.

Thank you Serenity Now. I appreciate the support.

Post Edited (weirdal1968) : 6/11/2016 2:05:51 PM (GMT-6)

✚ New Topic ✚ Reply
12