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alexciasmom
02-08-2012, 07:10 PM
Ever since i started treatment allmost a year ago. I have not had any dreams or at least any i remember. This is weird i use to have them that i remeber having 5 or 6 times a week. But not in allmost a year not one? I am thinking its the meds but who knows. Anyone else missing there dreams????

pberggren1
02-08-2012, 07:12 PM
It must have something to do with immune suppression. I still have dreams during treatment but cannot remember any of them.

By the way: I love your signature.

alexciasmom
02-08-2012, 07:30 PM
Ahh thancks Phil. shes my reason i fight every min of every day. shes my every thing.

Psyborg
02-08-2012, 10:44 PM
I have quite the opposite affect. Especially on CTX I had intensely weird dreams. :) I mean really vivid and strange.

The pred seemed to give me more violent dreams as well, like all that angst came pouring out in my sleep.

Sangye
02-09-2012, 02:46 AM
A vitamin B6 deficiency can interfere with your ability to dream or remember your dreams. Pred depletes B6, so there you go.

If meds like ctx give you more vivid dreams or nightmares, it's probably due to their effect on the liver. All drugs stress the liver, even if they're not famous for doing so.

annekat
02-09-2012, 04:49 AM
I have quite the opposite affect. Especially on CTX I had intensely weird dreams. :) I mean really vivid and strange.

The pred seemed to give me more violent dreams as well, like all that angst came pouring out in my sleep. I'd have to say my dreams got weirder and more vivid after starting CTX as well. Not usually violent, though I guess sometimes. But composed of vivid segments that don't fit together well. Sort of how my dreams were before, but more exaggerated.

Anne

Kami
02-09-2012, 06:56 AM
When I was severely B12 deficient I had no dreams at all. Since starting B12 they came back but I can't remember them, lol. Since being on Pred they have been pretty busy dreams. Although I can't remember them but I know they have been intense at times.

NicShaf
02-09-2012, 09:02 AM
How funny, I was just telling my husband that I've been having the weirdest, most vivid dreams the past couple weeks, it seems like its been since I started MTX. I didn't notice any difference when I was on CTX, it was the same as before treatment...some I'd remember well, and some not at all.
Last night I had a dream that I was living in the new Twilight movie, it was odd! I guess I'm almost anxious for the next movie to come out this weekend:)

Chris G
02-09-2012, 09:05 AM
My dreams were also much more intense while I took mtx. Really noticeable the night I dosed, and the next night as well. Sometimes violent!

Kami
02-09-2012, 09:26 AM
Hhmmmm Maybe mine are from the MTX?? I will have to pay attention now as I just went off the pred but am still on the MTX.

Lightwarrior
02-09-2012, 10:27 AM
I have dreams, they say that you don't remember your dreams unless you wake up right after or in the middle of. I have always been able to change the direction a dream is going unless I take vicodin... and then I have really dark dreams that I can't change. So...problem solved I don't take vicodin.

Al
02-10-2012, 03:00 PM
I can't take MTX, but I can tell you that the pred can have a large effect. While I had no memorable dreams in the hospital (probably because any kind of sleeping was impossible, as they come around regularly to check vitals, draw lodd, or simply to ask, "are you resting comfortably, sir?"), they started in earnest when I got home. Immense, complex, long-form dreams that often carried the narrative arc through as many as four sequential dreams. (I would wake up, write down the story, fall asleep, wake up to right down the sequel, etc.) Many of them were dreams within dreams, and they were always extremely vivid. These were the first dreams I had ever remembered that engaged all sensory modalities, including proprioception. A couple even came with a soundtrack (the most memorable was a Johnny Cash guitar/voice tune, the refrain of which I can hear in my head to this day; ironically, I knew that I was in a dream, and thought I needed to get out, but I couldn't do it, until Johnny Cash and the smell of new-cut timber saved me!). A Jungian would have a field day with these puppies. Though the dreams have become much less memorable sense the pred dose came down, their vividness has diminished only a little. By the way, my liver tests have always been boring, even after I started AZA.

Dreams are interesting phenomena. My own conjecture is that they have everything to do with a built-in module that we all have: a narration generator. But that is another long tangent....

me2
02-11-2012, 06:11 AM
Al, you have a juke box in your dream room? Nice.
WG uses up lots of Johnny Cash. ha
I've had a wiff of my own pine box- that was a wake up.

I have been with working with a Jungian analyst for several months now and he has told me he has written me up as a case study in a book that is almost done. He is going to let me peruse it before submitting it. I use my dreams to help guide my treatment- try submitting THAT to an insurance company. I don't know what he tells them but I'm still approved to go.
It has been an interesting journey of seeing what my dream land thinks of my earthly situation and the dialogue that resulted.
So its official now , I'm crazy enough to be written up.

Seriously though , my dreams have at times been very helpful and especially in pivotal times.

Al
02-11-2012, 11:28 AM
Al, you have a juke box in your dream room? Nice.
WG uses up lots of Johnny Cash. ha I've had a wiff of my own pine box- that was a wake up....So its official now , I'm crazy enough to be written up.

Nice going, Kirk! You surely deserve to be a case study.

Ah, yes--smelling the ol' pine box, hangin' with the hangman, dancing with Styxian stars....We know those things. When you are on a first name basis and bending elbows with the ferryman, you tend to see things a little differently, yes? And this will show up in dreams every so often, I think.

My Johnny Cash song, by the way, was not one he ever sang, but one that came de novo out of my dream world. I still remember the the D and A chord ostinato. And, while I am familiar with the pine scent (both literally and metaphorically), the aroma of that dream was all red cedar and Doug fir....

Al

annekat
02-12-2012, 01:43 PM
Sheesh, you Pacific Northwesters are really something. I wish I (also a PNWer, of course), could remember my dreams as well as you can, Al. I know they are equally vivid, with phenomena such as that song that would normally take hours to compose. But I don't write them down and am afraid if I tried, the memory would be fading as I write. Maybe should give it a shot, though. And Kirk, very cool! Another Olympia/Shelton brush with fame. Please let us know the name of the book when it comes out.

Anne

me2
02-12-2012, 09:55 PM
Hi Anne,
Well, dream work isn't for everybody but it can be done by anybody who wants to. You might find the memory becoming more clear as you write also.I have had it go both ways. The work is equally usefull no matter which direction things seem to be heading at the time. I'll let you know the name of the book if I don't come out looking like some kind of kook- he has to stretch the truth a bit and make me look a little normal. I'm not even sure what the book is about - we talk about other things.
I upload my content and its up to him as to what he wants to make of it. Surely,it will be interesting and look at all the
un-billable hours of attention my dreams will be getting. ha

Cedar and Doug fir are two of the best scents out there Al. I've lived with them all my life. Seems more optimistic than my pine box too. Hey can you play that Johnny Cash song? How about giving some hints with the cords and I'll try and see what happens on my mountain dulcimer- just happens I can do A and D chords.

"I hear the train a comin' , its comin' down the track
Its Wegners with a boxcar full of 'I don't want it back'

annekat
02-13-2012, 06:20 AM
"I hear the train a comin' , its comin' down the track
Its Wegners with a boxcar full of 'I don't want it back' LOL. I can hear Johnny Cash singing that as I sit here. Maybe there is a good impersonator among us?

As for Doug Fir and Western Red Cedar, YES! I can't smell anything right now, but faint whiffs of things can drift through my conscience, and I think it's possible I can smell in dreams!

Anne

Dryhill
02-13-2012, 12:43 PM
We all dream three or four times a night, assuming not interrupted as Al experianced in hospital. The dream we normally remember is the last one just as we come out of REM (Rapid Eye Movement) sleep. As eating just before going to sleep seems to influence dreams it is no wonder that the meds we are on shouild do the same.

The best time to wake up is soon after a period of REM sleep as that is our lightest sleep pattern and one wakes feeling more refreshed than say waking when entering, or in REM sleep. There are electronic gizmos available to help work out when it is the best time to wake up - I understand that there is even an alarm clock that can be set to wake you in the morning when you enter the light sleep pattern.

Al, I love Johnny Cash music and think it would be awsome to have that in my dreams ............ oh no on second thoughts that could be a problem! I have the habit of talking in my sleep and often wake myself up, if I had Johnny Cash music in my sleep I would probably be woken up by my very, very poor attempts to sing along with the great man. :w00t:

Jim

Al
02-13-2012, 05:30 PM
LOL. I can hear Johnny Cash singing that as I sit here. Maybe there is a good impersonator among us?

As for Doug Fir and Western Red Cedar, YES! I can't smell anything right now, but faint whiffs of things can drift through my conscience, and I think it's possible I can smell in dreams!

Anne

Kirk and Anne: Yes, it is amazing what the smell of WRC and Doug Fir can do for everything that ails you--psychically, at least. In my Johnny Cash dream, it left me feeling empowered, where the rest of the very long dream up to that point was one where I controlled nothing, and nothing was cooperating. Funnily enough, I can still, er, visualize (smelluize?) the scent even now, months later. Johnny, or a very good sound-alike, had been singing low level in the background as the train I was on (how did you know?!) pulled out of the city into the forest. Tthe song itself I could not decipher; presumably my brain couldn't make up words fast enough. But the chords were a simple V-I-V-I-V-II-IV-V7-I, Now, at this point in the dream, it was music (refrain) up, V-I-IV-V-I chords, and the words were, "You've got a long, long way to go. Oh, yes, a long long way to go." Repeat, and I woke up. Memorable indeed. So, Kirk, the chords would have been D, A, and G(7). Knock yourself out!

Al

PS I, too, would be fascinated with the write-up when it comes out, whether or not (or maybe especially if) you are certifiable. Dreams are fascinating business, even though I am not a Freudian. I do know a few Jung types, however, who seem to fit in better with a modern sense of neurophysics.

Al
02-13-2012, 05:56 PM
Jim, I like Johnny Cash, though I wouldn't call myself a hardcore fan. I think that, for purposes of my dream, my narrative generator picked him because of two covers I had worked with not long before: Bird on a wire, from the Weggie favorite Leonard Cohen (I used it as part of a presentation to some ornithologists--such is my twisted humor), and Waiting for a Train, originally sung by Jimmie Rogers. I think my brain had Johnny sing the particular tune in my dream, just because it was so simple to make up on the fly, which dreams have to do. Much easy than compose on such notice a Mahler-like symphony, say, or a Bach-like Fugue, don't you think?

Al

annekat
02-14-2012, 04:12 AM
All very interesting, Al. If I had a dream that cool I suppose I'd write it down, too. I do remember some things about the one I woke up from this morning, but they are too goofy to share. The general gist was trying to find people and things I'd become separated from during a sequence of events, and trying to accomplish simple tasks but having trouble doing them. I'm sure that sort of thing is very common and does mean something. Some of the details can be pretty weird, but not in a way that is interesting enough to share, except maybe with a Jungian analyst.

Anne

Al
02-14-2012, 07:57 AM
All very interesting, Al. If I had a dream that cool I suppose I'd write it down, too. I do remember some things about the one I woke up from this morning, but they are too goofy to share. The general gist was trying to find people and things I'd become separated from during a sequence of events, and trying to accomplish simple tasks but having trouble doing them. I'm sure that sort of thing is very common and does mean something. Some of the details can be pretty weird, but not in a way that is interesting enough to share, except maybe with a Jungian analyst.

Yes, Anne, this kind of dream is, I suspect, common for everyone. If my idea of the narrative generator is correct, this kind of frustration dream is, in fact, almost inevitable. Here is the basic idea: We know that we do not experience reality directly (we know this because it can be shown that consciousness lags behind object reality by about a third of a second--time enough to establish a story line that makes sense according to the incoming data. In effect, we are editing all that incoming sensory data and integrating it with our memory banks into a cohesive story line. During sleep, however, the sense organs themselves are not updating us. When we dream, the part of the brain that writes the story is turned on, but its incoming data is not from working senses, as they are turned off, but from (if I get this right from neurophysics) random firing from an area in the brain stem. The "narrative generator" is desperately trying to make up something plausible from this stream of gibberish. (The what it considers plausible is what interests dream interpreters.) But because the narrative generator is essentially free-wheeling during dreams, and not synchronized by any constant updating to the objective world, it will fly from story element to story element. So the sequence of events in a dream can get pretty wild. We also know that brains are very good at "confabulating"--making up plausible motives for during something. When this happens during full consciousness, this sounds like lying to oneself. But during dreams, this leads to a kind of frustration: One moment's motives don't work for the next segment. For example, in a typical dream, I might be trying to get to a job, but first I have to find a piece of gear I need, which happens to be at another location. But I can't start the car because the battery is dead. So I get someone else to drive me. For some reason that person needs to stop by the grocery store. So I set out walking, and meet up with a gut walking a bear....And so on. Of course, I never get to the job. In fact, the original motive may hang frustratingly in the background, but the scene changes regularly to make sure the goal can never be met. I suspect that this aspect is only an artifact of the way our physiology works. The really interesting stuff is in the momentary parts--the wise old woman you meet along the way; the kind of vehicle you are riding in; the piece of gear you break; the tunnels you go through to get to your hoped-for destination; and so on. Also, what motivations turn out to be recurring themes. For me, a fascinating part of the pred reaction was that the narrative arc, normally choppy, could become so extended.

As I say, an interesting subject. Dreams must say something about how we are constructed, but what is more difficult to determine....

Al

alexciasmom
02-14-2012, 10:44 AM
well i am now dreaming.. i had fish hooks stuck all over my body and when i woke up i had pain were ever there was a hook. lol better than no dreams.

pberggren1
02-14-2012, 12:18 PM
I had a neat dream today around 3 just before I woke up.

I was a real estate agent and was trying to get into a deal for one of my clients in a large upscale condo in Palm Springs, CA.

We got in and were given a tour. The developer like me and asked if I wanted to join his team so I did. I then proceded to sell condos around the world like this. The next thing I knew I was in eastern Europe somewhere on beach front property and was showing a place to my sister. Then I woke up.

Al
02-14-2012, 01:15 PM
well i am now dreaming.. i had fish hooks stuck all over my body and when i woke up i had pain were ever there was a hook. lol better than no dreams.
Yikes! I think I wold rather have slept through that dream! But you do raise a technical point: Senses are not turned totally off while sleeping. For example, nearby sirens (or alarm clocks) can enter your dreams in the form of car alarms or similar.

Al

Al
02-14-2012, 01:20 PM
I had a neat dream today around 3 just before I woke up.

I was a real estate agent and was trying to get into a deal for one of my clients in a large upscale condo in Palm Springs, CA.

We got in and were given a tour. The developer like me and asked if I wanted to join his team so I did. I then proceded to sell condos around the world like this. The next thing I knew I was in eastern Europe somewhere on beach front property and was showing a place to my sister. Then I woke up.
Ah...Phil, the Ricky Roma (or maybe Al Pacino) Wannabe? (One of my favorite Alec Baldwin lines: "First prize, a Cadillac. Second prize, a set of steak knives. Third prize, you're fired." A great ensemble movie.

Al

pberggren1
02-14-2012, 04:23 PM
Which movie is this Al?

Al
02-14-2012, 04:26 PM
Glengarry Glen Ross.

Al

annekat
02-14-2012, 05:18 PM
Thanks for the interesting and informative discussion on narrative generation in dreams, Al. Once again, did you actually smell the cedar and fir trees in your dream, not with your nose, but with that special part of your brain stem? Or was someone cutting cedar and fir nearby while you were waking up? Just wondering, because when I think I catch whiffs of things, I think it may be generated somewhere like that without any help from my nose, since I really can't smell right now due to my WG related sinus problems.

Anne

Al
02-14-2012, 05:26 PM
Thanks for the interesting and informative discussion on narrative generation in dreams, Al. Once again, did you actually smell the cedar and fir trees in your dream, not with your nose, but with that special part of your brain stem? Or was someone cutting cedar and fir nearby while you were waking up? Just wondering, because when I think I catch whiffs of things, I think it may be generated somewhere like that without any help from my nose, since I really can't smell right now due to my WG related sinus problems.

While I had recently been around the firs (though not the cedars), Anne, at the time of the dream they were just a memory. Also, I have tasted things in my dreams that I cannot taste in real life....

Al

annekat
02-14-2012, 05:36 PM
Thanks for that clarification. I will certainly have to celebrate if I can smell cedars and firs and Oriental lilies again someday. But smelling them in my dreams would be pretty good, too.

Anne

skipper
01-05-2013, 05:31 AM
I am off prednisone - almost a month now but i have horrible night terrors and I see figures in the room. I am on Paxil and the new drug added was mycophenolate (it's a newer anti rejection med and pharmacist not much known as the test group is so small) 2000 mg a day. really scary. I feel disoriented and the dreams seem so real it is hard to separate from reality. Since off pred I ache constantly. Any ideas?

annekat
01-05-2013, 05:34 AM
Oh, man, if that new drug is causing the dreams, I think I'd prefer to be off that and back on a little bit of pred!


I am off prednisone - almost a month now but i have horrible night terrors and I see figures in the room. I am on Paxil and the new drug added was mycophenolate (it's a newer anti rejection med and pharmacist not much known as the test group is so small) 2000 mg a day. really scary. I feel disoriented and the dreams seem so real it is hard to separate from reality. Since off pred I ache constantly. Any ideas?

Sangye
01-05-2013, 05:53 AM
Skipper, I checked online and found that BOTH Paxil and Cellcept can cause hallucinations. You need to contact your doctor immediately. This is very serious.

skipper
01-05-2013, 05:55 AM
Oh, man, if that new drug is causing the dreams, I think I'd prefer to be off that and back on a little bit of pred!
problem is I don't know if that is the culprit. Every med has its side effects and I have had liver enzymes hit the roof which led to Ultra sound and more tests. This med seems to agree with my body but the nights are so difficult for me I don't want to sleep. That leads to sleep deprivation and more nightmares. What a cycle. :sad:

skipper
01-05-2013, 06:32 AM
Thank you - I will do that. the office is closed until Monday - I have been on Paxil for quite awhile but Cellcept is new. :ohmy:

jola57
01-05-2013, 03:14 PM
I hope you can get at least some zzz's

skipper
01-06-2013, 02:32 AM
I held your wish in mind and did fall asleep around 2. I think i am stressed about sleeping now. They were disturbing but not the usual hallucinations. I did dream I fell out of bed and woke up screaming. It was so real I had to check that I wasn't on the floor. I will see the doctor on Monday but don't hold out much hope for solution. He knows nothing about Wegeners and I think just lets me diagnose myself. If I didn't have this site to refer to I would feel I was totally alone. Because I don't look ill and I function okay everyone thinks things are just fine. That sounds selfish. I am not looking for pity but there are some days I would love to have help. Here, on this site, I know you understand these guilty thoughts. Skipper

JeanMarie
01-06-2013, 05:57 AM
Gee Skipper, nothing selfish about it at all!!!!

skipper
01-06-2013, 07:02 AM
Perhaps but there are days when this really hits me. I realize how fortunate I am to have had treatment but perhaps the dreary days of January add to depressed thoughts. I appreciate your comments. Nice to come to the computer and see something positive. I hope your day is going well. Skipper

renidrag
01-06-2013, 08:06 AM
I jumped out of bed trying to save my daughter and step-daughter from being abducted. My grunting woke me up. Some times very vivid dreams, and I am off all WG meds. I never remembered my dreams until this. Any way Skipper, Jack once told me I should not feel guilty or selfish for getting better, it would possibly be inspiration for others. I hope so.
Dale

skipper
01-06-2013, 10:18 AM
Dale that is so like my dreams. I often talk to the people and wake up to hear myself. Never had that before but I come from a family of sleep walkers. Might have a genetic link. It must be wonderful to be off all meds. I wasn't sure that every happened. I have kidney failure so I imagine BP meds will always be a part of my regimen. As for the others, who knows. You are an inspiration. I didn't know of anyone off meds. Thank you. Skipper

Sangye
01-07-2013, 01:26 PM
Skipper, there are many Weggies who are in drug-free remission. They probably don't come to this group or stay once they're in remission since they're back to their lives. I hope you can count yourself among those in drug-free remission someday.

annekat
01-07-2013, 01:36 PM
Skipper, there are many Weggies who are in drug-free remission. They probably don't come to this group or stay once they're in remission since they're back to their lives. I hope you can count yourself among those in drug-free remission someday. I hope that for Skipper, too, and for you, Sangye! And for me and the rest of us, of course!:cool1:

skipper
01-08-2013, 02:19 AM
I didn't realize there was a time when one could come off meds all together. I think I fear that a bit in case it flares but I know it can flare even on meds. I have a summer home that I love. it was no more than a cabin that my husband enlarged and i spent many happy days there. there is a mine quite near and it has been found that the dust from the rock crushing is in the air in unsafe amounts. I cannot go there. I even wonder if it was the trigger for my Wegeners in the first place. My doctor knows very little about Wegs. In fact he learns most of it from me. My nephrologist knows more but I don't see him as often now. Everything useful i have learned has been on this site. Thank you all. Skipper

annekat
01-08-2013, 02:46 AM
I didn't realize there was a time when one could come off meds all together. I think I fear that a bit in case it flares but I know it can flare even on meds. I have a summer home that I love. it was no more than a cabin that my husband enlarged and i spent many happy days there. there is a mine quite near and it has been found that the dust from the rock crushing is in the air in unsafe amounts. I cannot go there. I even wonder if it was the trigger for my Wegeners in the first place. My doctor knows very little about Wegs. In fact he learns most of it from me. My nephrologist knows more but I don't see him as often now. Everything useful i have learned has been on this site. Thank you all. Skipper Your cabin sounds like the one I live in.... was originally probably a hunting/logging shack that became a summer home and has been in my family since the early 1950's. I've managed to fix it up on the outside, but it is still a wreck on the inside! Need to find a nice guy to help me with that....

Interesting about the mine and the rock dust. People on here know that I work in ceramics, and I recognize that that could also be a trigger for Wegs. One needs to be careful with these things.....

BTW, I think it highly likely that I also know more about Wegs than my doctor....

gwenllian111
01-09-2013, 07:43 AM
I have a lot of vivid dreams.

If I dream of being on the water, in a boat or in the sea, I usually fall poorly afterwards!

However, when i'm on pred I have to take anti psychotic meds, and when I take these - I don't dream at all.

pberggren1
01-09-2013, 09:51 AM
I always dream a lot while on pred. Had some pretty weird dreams lately. My doc is in a lot of them.

skipper
01-12-2013, 04:05 AM
I have been in remission for about 4 months and off prednisone but I am so fatigued that I can hardly function some days. Then I don't sleep well because of the dreams. I ache a lot and some days feel so low until I realize that all of this could be much worse. I feel I am just one complaint after the other but when I don't say I am tired or having pain everyone thinks I am my former self - it's such a cycle. so glad I can just let it out here. It's a dreary January day here and the flu seems to be raging. I guess it's that way everywhere. Skipper

skipper
01-12-2013, 04:07 AM
Does your doc offer any help? I told a psychologist I had a dream about him and he thought I had a crush on him. If he only knew how far from the truth that was. He assumed it was a happy dream LOL

renidrag
01-12-2013, 04:46 AM
Even being off WG meds, fatigue has been the one symptom I battle every day. Dr Monach spoke of this and does not know why it remains but it seems to be true for all of us.
Dale

annekat
01-12-2013, 05:10 AM
Does your doc offer any help? I told a psychologist I had a dream about him and he thought I had a crush on him. If he only knew how far from the truth that was. He assumed it was a happy dream LOL Oh, man, that could have happened to me, too! I had a psychologist about 25 years ago who I think tried to get me to say I had a crush on him! I got the feeling that was part of the therapy process. In this case, he was an attractive and nice guy, and I might have had a TINY crush on him, but I of course put it out of my mind; I knew he was married, but wouldn't have gone there anyway. All it did was make me uncomfortable. It's been so long I don't remember whether I ever dreamed about him. I think I actually quit the counseling not too long after that.

annekat
01-12-2013, 05:14 AM
Even being off WG meds, fatigue has been the one symptom I battle every day. Dr Monach spoke of this and does not know why it remains but it seems to be true for all of us.
Dale That certainly fits with what I'm going through! Most, if not all, of my symptoms have improved greatly, but there is still the fatigue. I can get up and get going on something if I have to, but I will feel the effects later.

skipper
01-12-2013, 05:33 AM
That's funny. This psychologist was single but not in the least attractive. He must have thought he was. Perhaps it's a syndrome and they think all patients fall in love with them. I closed down after that and yes, I too stopped seeing him. He probably thought I was pining for him LOL

skipper
01-12-2013, 06:01 AM
I have been so slow this morning but avoid lying down. Although I am not happy others have this symptom it is reassuring for me. Skipper

skipper
01-12-2013, 06:02 AM
How long have you been off meds?

drz
01-12-2013, 06:14 AM
I think fatigue is just part of my illnesses. I had fatigue for years just from my diabetes, but the Wegs made it far worse. I had many physical reasons besides the meds that contributed to the increased fatigue. Fatigue is natural result from anemia, kidney damage, lung damage and I believe from the Wegs itself for many of us. I believe it will always be part of my life henceforth. I enjoy the hours between naps when I feel able to do something more active.

skipper
01-12-2013, 08:01 AM
since i have anemia, kidney damage, and bronchiectasis i guess the fatigue is "normal". Good attitude though. I will enjoy the hours in between more. Skipper

annekat
01-12-2013, 08:44 AM
since i have anemia, kidney damage, and bronchiectasis i guess the fatigue is "normal". Good attitude though. I will enjoy the hours in between more. Skipper My doc usually tells me I'm not anemic, but I do have some lung damage and also get out of breath from stuff from my sinuses collecting in my trachea and always having to cough it up. There's also the fact that our adrenals are often not functioning normally, from all the pred we've been on.

skipper
01-12-2013, 08:56 AM
I was wondering about the adrenal gland. Whatever - there's a lot of mystery to this - most of my information comes from here

annekat
01-12-2013, 09:14 AM
I was wondering about the adrenal gland. Whatever - there's a lot of mystery to this - most of my information comes from here I'm not expert enough to really address this, but I've read posts from Sangye and others who know more than I do. What I've gathered is that prednisone actually takes over the function of the adrenal glands, and over a long period of time on high doses, they will actually shut down from lack of use and will not always kick back in at low doses of pred or if it is discontinued.

Dirty Don
01-12-2013, 09:35 AM
I was wondering about the adrenal gland. Whatever - there's a lot of mystery to this - most of my information comes from here

Adding to Anne, the adrenals produce about 3mg of 'natural' pred a day. Thus, docs are trying to get adrenals back online by 'matching' at some point the 2 sources of prednisone and hoping they kick back online and produce what they should.

skipper
01-12-2013, 10:47 AM
it all makes sense. I know someone who was on pred at the same time as I was for another disorder but he has not been able to come off it. He gets to a low dose and the doctor says he can't move from that for another couple of months. I think his heart/respiratory system is affected by it. Nasty drug but like the Buckley's ad says - it works. Thanks for all the input. Skipper

Sangye
01-13-2013, 04:30 PM
If you're on at least 20 mg pred for at least 3 weeks your adrenals shut down completely. As you taper below 5 mg they can try to come back online. It's very individual. Some adrenals come right back on and some don't. Some never do.