Important disclaimer: I'm just posting here to share something that I find humorous (tragically so, anyway) and in no way desire any debate over the relative merits of mainstream vs. alternative medicine. In other words, if you want to promote/suggest/recommend an herbal (or non-herbal) supplement, vitamins, dietary changes, Chinese medicine, acupuncture, acupressure, massage therapy, hydrotherapy, drinking one's own urine, drinking horse urine or urinating on horses... please don't.
Still want to? Or maybe you want to talk about a vast drug & insurance company conspiracy to suppress a cure for multiple sclerosis (or incurable diseases in general). Not here in this thread, please.
If you think this warning doesn't apply to you and your advice, it probably does unless it's a recommendation for something that requires a prescription in the U.S. Otherwise, be aware that violators will be dragged into the street and shot. Don't believe me? Then check out the list of corticosteroid side effects, which include personality changes, extreme irritability and frank psychosis. :shock: :twisted: [/i]
.... on to the story ....
So, my left eye crapped out a few months ago, and having run the gauntlet of docs, I was at last given a diagnosis of optic neuritis with multiple sclerosis as "almost certainly the cause" based on the clinical evidence, symptoms and MRI results. I'll know for sure once I spend a little more quality time with my neurologist.
In the meantime, I was instructed to visit a particular ophthalmologist who specializes in serious eyeball issues. This guy has a serious pedigree and has been in practice for almost twice as long as I've been alive. And he wanted to save Mr. Eyeball, who I really think (the eye, not the doc) belongs in a biohazard container somewhere, but this doctor is badass. Actually, he's not badass in the usual sense of the word -- he's a kindly little old man who I could snap in half over my knee without much effort and who is doubtlessly a favorite of his 30 or so grand- and great-grandchildren.
But he does have a pedigree (or rather, C.V.) and it's hard to say no to such a NICE old man. This fellow has vast clinical experience spread between hospitals and military bases as well as in private practices and has published numerous peer-reviewed articles in reputable journals. So I listened and took his advice even though it flew in the face of evidence-based medicine, which happens to be my own darling as a medical science fanatacist. The evidence says the best thing to do for optic neuritis is either pulse steroids (extremely high doses for a few days) or no treatment at all. High dose steroids for weeks or months appears to have worse outcomes overall and is accompanied by some serious risks. But that's exactly what Dr. SweetOldMan wanted to try, and I agreed to do it.
Side note: I'm referring to corticosteroids, not anabolic steroids. Both have potentially serious side effects and some of the side effects are even the same. But anabolic steroids make you grow muscle, while corticosteroids make you age prematurely (amongst other things). Very, very, very different chemicals (testosterone and associated friends vs. cortisone and associated friends). That cream they sell at Wal-Mart for poison ivy? That's a very weak corticosteroid. That prescription-only cream they advertise in Men's Health to treat the dubious condition of "Low T"? That's a weak anabolic steroid.
In this case, the drug in question is prednisone. You've probably taken prednisone or a very similar drug, in small doses. Maybe your doctor wrote you one of those dose packs for some bad allergies or joint problems... the kind where you take 6 or 7 pills on the first day, then one fewer pill each day until you finish the pack. Maybe you felt fine on it; I did when I took dose packs of the stuff a few times over the years. Maybe you didn't; some don't. Corticosteroids don't usually cause significant side effects unless you take them for a few weeks or so, though. Then all hell breaks loose...
No doubt prednisone is THE most hated drug among patients (at least those who've had to take it for more than a week or two, especially at high doses). The list of *common* side effects is shocking to say the least, and affects every part of the body. Some of the most common include massive weight gain, despite any effort you might take to avoid it... much of this is water retention, some is fat, and some is apparent weight gain due to redistribution of fat from nice places like your butt to bad places like your cheeks, abdomen and the back of your neck. Other common side effects include (temporary) diabetes, personality changes, increased blood pressure, bone density loss, thinning of the skin, thinning of the blood, easy bruising, increased cholesterol, bright red stretch marks, constipation, glaucoma, cataracts, gastritis, ulcers, other gastrointestinal issues (including life-threatening GI bleeds), and of course -- immunosuppression.
Most of these side effects appear at "high" doses (20mg or more per day) taken for at least two or three weeks straight. I was instructed to take 100mg per day for at least three months, at which point we would consider beginning the long and painful process of weaning off of the drug. Just stopping it all at once after so long and so high a dose is dangerous and quite possibly life-threatening. In general, one needs to wean off a regimen like this for several months to prevent any really unpleasant post-steroid rebound effect.
Like the apparently-multiple-sclerosis (and all of its delightful symptoms, some of which I've suffered for about three years without a diagnosis), the prednisone was an unwelcome and not very friendly guest. Over time, the side effects became more and more severe, and now as I approach three months on the drug, I am pursuing a very aggressive tapering schedule to get off of it as rapidly as is safe, despite whatever discomfort might occur. So far, the discomfort is extreme.
But why, you ask, am I in such a hurry to be rid of this delightful drug? We'll get to that in a moment. First, an important message: WARNING: THIS IS ABOUT TO GET GRAPHIC.
Side effects I have experienced during prednisone treatment:
Weight gain of 30 lbs in the first six weeks, despite eating better than usual and exercising much more than usual.
Gastritis and esophagitis, along with severe upper abdominal discomfort that wakes me up at night with pain that feels like a heart attack but is actually caused by my esophagus having something akin to a Charley Horse.
Facial swelling to the point that I look like a bizarre caricature -- "Karanya if she weighed 400 lbs and was mentally retarded"
Doubling of waist measurement -- I look nine months pregnant with twins -- because of the fluid accumulation in my abdomen.
Severe shortness of breath, especially while lying down, because lungs are buried in gallons of fluid.
Grotesquely swollen ankles with deep pitting edema and legs so swollen that they feel like walking on logs from the knee down.
Skin so thin that it tears off like tissue paper (leaving nasty, bloody wounds) if lightly scratched.
Insomnia, anxiety, panic attacks, palpitations, and a constant heart rate of over 110 bpm at rest.
Seven separate infections requiring medical treatment (five bacterial, one viral, one fungal).
"Menstrual changes" (by which I mean waking up literally soaking in blood when I just had a period a couple of weeks ago)
Curiously my blood pressure and blood sugar are great! Not sure about bone density but I'm not holding out hope and am taking lots and lots of calcium, magnesium and Vitamin D to prevent as much damage as possible. No stretch marks, at least.
All of this was bad... very bad... yet I continued to dutifully take my 100mg of prednisone each day, along with the rest of the pills I'm now on. 31 total each day, 19 of which are to treat side effects from the prednisone and/or to lessen the amount of damage it causes.
Yeah, that was pretty bad. And I disliked the prednisone, but I didn't quite HATE it. After all, the vision in my left eye was improving: a miracle! All the way up to 20/400 from 20/6,000! Shit, I could make out the E on the big wall chart. Sort of. But improvement!
Somewhere, though, one has to draw a line in the sand. And the prednisone finally crossed that line when, a few days ago, I farted and blood sprayed out of my ass.
That was just too much. The prednisone had to go.
Of course, it didn't happen QUITE that suddenly. It started with several weeks of severe, unremitting constipation, and the return of hemorrhoids I hadn't felt the wrath of since I was pregnant with my now-five-year-old daughter. Constipation so severe that that I was shitting turds the size of coke cans with the consistency of granite. Of course, with the thinned tissues and thinned blood/easy bleeding thanks to prednisone, each massive dump was not only a struggle but accompanied by bleeding from the hemorrhoids, sometimes profuse. Each attempt left the bowl bloodier and bloodier... eventually looking like a murder scene with a giant turd deposited in it.
And then one day I sat down to try to go, let a great big fart, and blood sprayed out in all directions. BLOOD. SPRAYED. OUT. MY. ASS. WTF!
That was it. Enough is enough. I put up with countless infections, bloaty face, preggo belly, bowels packed up like a drum and a truly miserable existence for close to three months. But that.. that was just too much. You finally pushed me too far.
Prednisone... you done gone and pissed me off.
--K
P.S. In case it isn't clear, yes, I am under very close medical supervision and have been for a while. In fact, I've spent more time in doctor's offices and hospitals over the last few months than I have in the entire previous 31 years.
P.P.S. Yes, this is why I haven't been posting as much as I used to. Hopefully I'll be back to annoying everyone once my health is ... under control.
P.P.P.S. For the people who give a shit, note that all but bone density loss are temporary side effects and will go away within a month or two of getting off the prednisone. I do have to worry about adrenal insufficiency (easily treated with a one-time booster dose of steroids) for the next year or so if I get any major infections, injuries, or have surgery; otherwise once the prednisone is gone I should be pretty much back to normal.
Still want to? Or maybe you want to talk about a vast drug & insurance company conspiracy to suppress a cure for multiple sclerosis (or incurable diseases in general). Not here in this thread, please.
If you think this warning doesn't apply to you and your advice, it probably does unless it's a recommendation for something that requires a prescription in the U.S. Otherwise, be aware that violators will be dragged into the street and shot. Don't believe me? Then check out the list of corticosteroid side effects, which include personality changes, extreme irritability and frank psychosis. :shock: :twisted: [/i]
.... on to the story ....
So, my left eye crapped out a few months ago, and having run the gauntlet of docs, I was at last given a diagnosis of optic neuritis with multiple sclerosis as "almost certainly the cause" based on the clinical evidence, symptoms and MRI results. I'll know for sure once I spend a little more quality time with my neurologist.
In the meantime, I was instructed to visit a particular ophthalmologist who specializes in serious eyeball issues. This guy has a serious pedigree and has been in practice for almost twice as long as I've been alive. And he wanted to save Mr. Eyeball, who I really think (the eye, not the doc) belongs in a biohazard container somewhere, but this doctor is badass. Actually, he's not badass in the usual sense of the word -- he's a kindly little old man who I could snap in half over my knee without much effort and who is doubtlessly a favorite of his 30 or so grand- and great-grandchildren.
But he does have a pedigree (or rather, C.V.) and it's hard to say no to such a NICE old man. This fellow has vast clinical experience spread between hospitals and military bases as well as in private practices and has published numerous peer-reviewed articles in reputable journals. So I listened and took his advice even though it flew in the face of evidence-based medicine, which happens to be my own darling as a medical science fanatacist. The evidence says the best thing to do for optic neuritis is either pulse steroids (extremely high doses for a few days) or no treatment at all. High dose steroids for weeks or months appears to have worse outcomes overall and is accompanied by some serious risks. But that's exactly what Dr. SweetOldMan wanted to try, and I agreed to do it.
Side note: I'm referring to corticosteroids, not anabolic steroids. Both have potentially serious side effects and some of the side effects are even the same. But anabolic steroids make you grow muscle, while corticosteroids make you age prematurely (amongst other things). Very, very, very different chemicals (testosterone and associated friends vs. cortisone and associated friends). That cream they sell at Wal-Mart for poison ivy? That's a very weak corticosteroid. That prescription-only cream they advertise in Men's Health to treat the dubious condition of "Low T"? That's a weak anabolic steroid.
In this case, the drug in question is prednisone. You've probably taken prednisone or a very similar drug, in small doses. Maybe your doctor wrote you one of those dose packs for some bad allergies or joint problems... the kind where you take 6 or 7 pills on the first day, then one fewer pill each day until you finish the pack. Maybe you felt fine on it; I did when I took dose packs of the stuff a few times over the years. Maybe you didn't; some don't. Corticosteroids don't usually cause significant side effects unless you take them for a few weeks or so, though. Then all hell breaks loose...
No doubt prednisone is THE most hated drug among patients (at least those who've had to take it for more than a week or two, especially at high doses). The list of *common* side effects is shocking to say the least, and affects every part of the body. Some of the most common include massive weight gain, despite any effort you might take to avoid it... much of this is water retention, some is fat, and some is apparent weight gain due to redistribution of fat from nice places like your butt to bad places like your cheeks, abdomen and the back of your neck. Other common side effects include (temporary) diabetes, personality changes, increased blood pressure, bone density loss, thinning of the skin, thinning of the blood, easy bruising, increased cholesterol, bright red stretch marks, constipation, glaucoma, cataracts, gastritis, ulcers, other gastrointestinal issues (including life-threatening GI bleeds), and of course -- immunosuppression.
Most of these side effects appear at "high" doses (20mg or more per day) taken for at least two or three weeks straight. I was instructed to take 100mg per day for at least three months, at which point we would consider beginning the long and painful process of weaning off of the drug. Just stopping it all at once after so long and so high a dose is dangerous and quite possibly life-threatening. In general, one needs to wean off a regimen like this for several months to prevent any really unpleasant post-steroid rebound effect.
Like the apparently-multiple-sclerosis (and all of its delightful symptoms, some of which I've suffered for about three years without a diagnosis), the prednisone was an unwelcome and not very friendly guest. Over time, the side effects became more and more severe, and now as I approach three months on the drug, I am pursuing a very aggressive tapering schedule to get off of it as rapidly as is safe, despite whatever discomfort might occur. So far, the discomfort is extreme.
But why, you ask, am I in such a hurry to be rid of this delightful drug? We'll get to that in a moment. First, an important message: WARNING: THIS IS ABOUT TO GET GRAPHIC.
Side effects I have experienced during prednisone treatment:
Weight gain of 30 lbs in the first six weeks, despite eating better than usual and exercising much more than usual.
Gastritis and esophagitis, along with severe upper abdominal discomfort that wakes me up at night with pain that feels like a heart attack but is actually caused by my esophagus having something akin to a Charley Horse.
Facial swelling to the point that I look like a bizarre caricature -- "Karanya if she weighed 400 lbs and was mentally retarded"
Doubling of waist measurement -- I look nine months pregnant with twins -- because of the fluid accumulation in my abdomen.
Severe shortness of breath, especially while lying down, because lungs are buried in gallons of fluid.
Grotesquely swollen ankles with deep pitting edema and legs so swollen that they feel like walking on logs from the knee down.
Skin so thin that it tears off like tissue paper (leaving nasty, bloody wounds) if lightly scratched.
Insomnia, anxiety, panic attacks, palpitations, and a constant heart rate of over 110 bpm at rest.
Seven separate infections requiring medical treatment (five bacterial, one viral, one fungal).
"Menstrual changes" (by which I mean waking up literally soaking in blood when I just had a period a couple of weeks ago)
Curiously my blood pressure and blood sugar are great! Not sure about bone density but I'm not holding out hope and am taking lots and lots of calcium, magnesium and Vitamin D to prevent as much damage as possible. No stretch marks, at least.
All of this was bad... very bad... yet I continued to dutifully take my 100mg of prednisone each day, along with the rest of the pills I'm now on. 31 total each day, 19 of which are to treat side effects from the prednisone and/or to lessen the amount of damage it causes.
Yeah, that was pretty bad. And I disliked the prednisone, but I didn't quite HATE it. After all, the vision in my left eye was improving: a miracle! All the way up to 20/400 from 20/6,000! Shit, I could make out the E on the big wall chart. Sort of. But improvement!
Somewhere, though, one has to draw a line in the sand. And the prednisone finally crossed that line when, a few days ago, I farted and blood sprayed out of my ass.
That was just too much. The prednisone had to go.
Of course, it didn't happen QUITE that suddenly. It started with several weeks of severe, unremitting constipation, and the return of hemorrhoids I hadn't felt the wrath of since I was pregnant with my now-five-year-old daughter. Constipation so severe that that I was shitting turds the size of coke cans with the consistency of granite. Of course, with the thinned tissues and thinned blood/easy bleeding thanks to prednisone, each massive dump was not only a struggle but accompanied by bleeding from the hemorrhoids, sometimes profuse. Each attempt left the bowl bloodier and bloodier... eventually looking like a murder scene with a giant turd deposited in it.
And then one day I sat down to try to go, let a great big fart, and blood sprayed out in all directions. BLOOD. SPRAYED. OUT. MY. ASS. WTF!
That was it. Enough is enough. I put up with countless infections, bloaty face, preggo belly, bowels packed up like a drum and a truly miserable existence for close to three months. But that.. that was just too much. You finally pushed me too far.
Prednisone... you done gone and pissed me off.
--K
P.S. In case it isn't clear, yes, I am under very close medical supervision and have been for a while. In fact, I've spent more time in doctor's offices and hospitals over the last few months than I have in the entire previous 31 years.
P.P.S. Yes, this is why I haven't been posting as much as I used to. Hopefully I'll be back to annoying everyone once my health is ... under control.
P.P.P.S. For the people who give a shit, note that all but bone density loss are temporary side effects and will go away within a month or two of getting off the prednisone. I do have to worry about adrenal insufficiency (easily treated with a one-time booster dose of steroids) for the next year or so if I get any major infections, injuries, or have surgery; otherwise once the prednisone is gone I should be pretty much back to normal.
I should post a picture of my massively bloated face so you can LOL with me. (Remember, it'll be back to normal in a few months, which is why it's funny rather than horrifying to me. It helps that my husband is being completely awesome, though, even/especially when I'm like "Oh my GOD I LOOK LIKE A MASSIVE FAT COW"... he grabs me, kisses me and says "You look good to me, wanna go do it?") Haha.
ops:
Prednisone certainly has some very serious side effects, especially at such an outrageous dosage. The loss of bone strength is going to be the worst part, but as long as your not out playing football you should be alright. So even with the prednisone you can only maintain 20/400 eyesight at best? And it may only be temporary? That is a tough call considering all the side effects. 
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