Question on Fatigue

[Patrickreed]

I've had GPA since 3/2013. I've always seemed to struggle getting my girlfriend to see my invisible illness.

I'd say fatigue has been an issue and I need help gauging it.

I work 40 to 50 hours during the week and 6 to 9 hours on Saturdays. I'd say 56 hours is a safe average. I work I.T. I sit in a chair all day. Surprisingly I find being so stationary has made things worse and amplifies my fatigue, at the end of the day I am exhausted. I do try to walk around quite a bit throughout the day at work.

Where I am running into an issue is that when I am home alone with our two kids I have a difficult time, I seem to fatigue too much too fast. They are 1 and 3 years old. I feel like my time with them is not quality when it's just me and I feel guilty becoming a bit of a zombie instead of an entertaining father.

My girlfriend wants to work more hours and needs be to be alone with the kids for full days and I'm not sure if I can do it, or do it well anyways.

Is this level of stress/fatigue normal or does it signify a bigger issue?

I know that being exhausted is normal for us, but I can't seem to get excited about spending the day alone with my kids because I know how I am going to feel....its a whole different story when super mom is there with us.

[Pete]

Hi Patrick,

Fatigue can be an issue, both with the disease and with medication side effects. I take 15 mg/week of methotrexate on Wednesday each week. I'm generally a little tired on Thursday, but I usually push through it if I have something that needs to be done.

I can empathize a bit about the little ones. My wife and I watch two of our grandkids once or twice a week. They're 3-1/2 and 2 years old and pretty energetic. (I wish I had half of their energy!) If we watch the kids on Thursday, my interaction is a little lower key than at other times.

You might want to do a couple of things to help with this. First, check with your doc to see if meds or too much work/stress might be the issue. Second, make time for at least 30 minutes of moderate exercise (brisk walks, swimming, zoom a, etc.) several times each week. Third, educate your girlfriend. Unfortunately, our disease presents in many different ways with many symptoms. Fourth, can you adjust your work schedule so that you work fewer hours? Or work from home? You may also want to explore why you feel the need to work so much (feeling indispensable, poor time management, lack of delegation, company culture, etc.).

Hope this is helpful.

[drz]

I think fatigue is our number one symptom. Five years after diagnosis and treatment it is still my main issue even though I have been in a drug induced remission for most of that time. I had symptoms of Wegs for two or three years or more before finally getting a diagnosis of Wegs. My case was then severe and it caused damage to my kidneys, lungs, hearing, balance, sinuses etc and made my neuropathy from diabetes worse. All of these issues contribute to my fatigue. Fatigue was already a problem just from my diabetes before i got Wegs. I spend about half of my time each day in bed either sleeping, napping or resting.

On good days I can usually get in a few hours of some activity. If I do much more and depete my "spoons" then I have to count of spending a couple down days to rest up and try to recharge and replace my "spoons". I think when we allow ourselves to get too run down we increase our risks of getting an infection or other physical issues that increase our risk of a flare.

For me I find some light or moderate exercise like a a slow walk (2 MPH) for a half to a to one mile also helps me with the fatigue feelings. Too much exercise or over exertion makes my fatigue worse as does too much resting with no exercise or activity unless I am run down or ill and trying to recharge.

On the up side not everyone is really impaired by their Wegs. Some people with Wegs can do super human things like climb Mt Everest, run the Iditarod, Bike cross country, run marathons, and work 16 hour days as a lumberjack or just maintain a normal active lifestyle.

Adjusting and accepting your "new Normal" after Wegs takes some time to figure out and generally involves a lot of trial and error. It depends a lot upon the severity of your Wegs, the amount of damage caused by it, your age, and the meds you now need to take to control it.

Only you can sort it out. A good doctor or counselor might be able to help you sort it out too.

[Dirty Don]

Spoons for everyone! I got'em, you get'em! Patrick...not sure the fatigue ever goes away as I still have to monitor my self quite frequently. The flip side is I have gotten this far after dx & crash...you'll get back to your kids, just gotta have patience, fortitude, and keep taking spoons as they come! Best to you.

[amy.r.kahl]

Having GPA....fatigue is just part of the disease, you're body's working extra hard to destroy healthy tissue, then there's the treatment drugs, and having to go to the doctor all time. I'm always exhausted so don't feel bad. Maybe have your gf read this forum so she'll understand more. And make sure you're including healthy sleeping habits at night.
Best wishes
Amy


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[Pete]

I've been experiencing some additional fatigue over the past couple of weeks. I had been attributing it to overexertion in getting our house ready for a family reunion. However, I didn't bounce back as quickly as I usually do. Today, I upped my pred to 5 mg from 2. I feel a bit more energetic even though today is also mtx day for me. And to cap it off, I got a cold from my granddaughter. Started the Xicam after supper. Oh well, we'll see how it goes...

[annekat]

Patrickreed, I don't know how you can work that many hours and contemplate spending days with the kids so that your girlfriend can work more hours. I'd say, consider day care, which I realize would be an extra cost, but when two people are working more or less full time, it becomes a necessity. Especially if one of them has WG/GPA. I hear so many people complain that their spouse or partner does not take their disease seriously. I live alone but get it from family members.... they realize I'm sick, but any time they see me working or getting something done, it reinforces their idea that I'm not really that sick. They don't get the fatigue thing too well. Of course, I want to work and accomplish things, not to mention keeping my house, yard, and personal effects and affairs in some kind of order. But the more I do, the more I can't do, it seems sometimes, if that makes any sense. We have to give ourselves some breaks or risk making ourselves sicker. There's something to be said for one or both parents reducing their work hours instead of increasing them, in order to maintain the home and spend quality time with the kids. That's just my impression, and I don't have all the answers for someone else.

[renidrag]

Fatigue has always been a problem, Dr. Monach in Boston is going to do a research project regarding just this. I was going to respond to this thread a couple of days ago, just too tired.
Dale

[Jason R]

My fatigue seemed to be related to my medication. I'm happy to say I found a combination that is working well for me after 4 years. I get Rituxan treatments every 6 months but am now taking 10 MG of Leflunomide daily. Finally no fatigue going on 3 months now! I was taking methotrexate weekly in combination with my Rituxan treatments previously but the fatigue which at first only lasted a day or two began to last 4 - 5 days. Before that I was taking Imuran but had issues with that as well. Everyone reacts differently to medications but I was not going to settle for feeling like crap without exhausting all of my options first. You might consider switching meds if you are in a position to do so. I goto the Mayo Clinic in Jacksonville for treatment of GPA. It's a 5 hour drive but we'll worth it!

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[annekat]

I might add that I feel a lot less fatigue since I was prescribed some asthma inhalers. I did not really have asthma most of the time, but had the typical Wegs cough with stuff dripping down from the sinuses and collecting in the bronchii. It was often hard to cough it up, but doing so would bring relief from any breathing problems, which felt like asthma. So I didn't think I had asthma, or that if I did, it was being controlled by the prednisone and MTX suppressing the reaction to allergens. That is what my WG doc/pulmy thought, too, and he didn't think the inhalers would help any WG symptoms. He was wrong on both counts. When grass season hit in May, it was really bad this year, and I had asthma and was gasping for breath a good part of the time. That scared him and he went ahead and prescribed me both the steroid inhaler and the albuterol rescue inhaler. It has been SO much better since then, especially the coughing, and I don't even have to use them that much. Once the steroid inhaler kicked in, after a few days, there was immediate relief, not only for the breathing but the WG cough as well. Whatever inflammation was in my windpipe, from WG or asthma, was subdued. I have less need now for the inhalers and think I can cut back on the steroid one which is used daily. So, the upshot is, I don't get nearly as much fatigue when I'm getting enough oxygen. That is my assessment, anyway.

[cjhnsn29]

Patrickreed, Fatigue is part of the diease for sure. I really don't know how you work that many hours a week. That probably contributes you to be more tired. Dr's actually took me out of work because of the meds and tired alot. My husband tells everyone I am good for half a day and we never know what part of the day. Working all those hrs and then watching the little ones alot I give you alot of credit for that. You are doing so much and I have to say I couldn't do it... I am really shocked that you can function most of the time... It's hard for a spouse or partner to understand what we go through. It's really hard. Good luck. C.J.

[PattyL]

Fatigue is a big issue I work 24 hrs a week that's about all I can handle at this time. I am raising an 11 yr old. I know that zombie feeling all to well. I also sit on my shift and walk around to keep things moving. By the time I get home I am exhausted. Fatigue is a part of our illness. It is something we will have to deal with until we are in remission. I wish you all the best. Listen to your body I know we tend to push ourselves past limits but..sometime we just can't.

[Dirty Don]

FYI: fatigue doesn't seem to go away despite any kind of remission, drugged or not. I've been off all meds for nearly 2 mos. now and still experience fatigue...perhaps not as badly as in the midst of the flaring, but certainly still there. Seems to be a part of the disease that doesn't completely go away despite all efforts. Best to you.

[annekat]

FYI: fatigue doesn't seem to go away despite any kind of remission, drugged or not. I've been off all meds for nearly 2 mos. now and still experience fatigue...perhaps not as badly as in the midst of the flaring, but certainly still there. Seems to be a part of the disease that doesn't completely go away despite all efforts. Best to you. I would generally agree with this, as parts of our tissues, organs, and blood vessels have been permanently damaged and don't function as well as they did pre-WG. Damaged blood vessels and lungs don't deliver oxygen to our systems as efficiently as before, for one thing. But everyone is different, we have different levels of WG involvement and damage and some may have more permanent fatigue than others. I've been dx'ed with WG since 2011 and have had some ups and downs, but must say that my fatigue has recently diminished quite a bit. This may be partly to having been prescribed some inhalers to help me breathe more easily, and I thus get more oxygen. But I also did not have a detectable flare this winter, for the first time, my blood numbers are all good, and I feel like I'm in a medicated remission, though no one has said so. I'm on MTX, prednisone, and Bactrim. If I quit the meds, it's fairly likely I'd flare again and the fatigue would come back. But you sound like one of the better examples of someone who can continue to work a heavy schedule while having WG.... not that I think you should, considering the fatigue, but some of us just cannot do that, period. If you were diagnosed early on and got treatment right away, you may have gotten away with less tissue damage and actually less of a fatigue problem than some of us. And if you are younger than middle age, that could be a factor, too, in being able to push yourself more. I still think a lighter schedule would be best for you in the long run; if you are not in remission, too much work and stress will delay that, most likely. I hope you do get to where your fatigue is less, but even then, Don is right, we can expect it to remain to some degree throughout our lives, and we learn to minimize it by taking it easy and not overdoing it, and giving ourselves time to recover from extra stress or activity. Good luck to you!

[amy.r.kahl]

I definitely have fatigue when especially when I'm having a flare up. I try to push through it as long as I can. I find that going on a walk gives me a new burst of energy but you have to push yourself to actually walk but taking a nap isn't bad but if I do take a nap during the afternoon I try and not drink anything with caffeine cuz then I will not sleep at bedtime. Hopefully you will find something that will help if not I say talking to your specialist! Best wishes :)


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[cjhnsn29]

Annekat I relate to the family not understanding at all. One day I can be great next day I can't even function and they say you were fine yesterday. My Dr explained to them there are good days and bad days you never know when it's going to be.it's hard to make plans to do things because some days you are more tired and exhausted. Then when you cancel there response is I knew it. That makes me so aggrevated. It's hard to understand unless you are actually going through WG. That's why I am glad I was able to find this site. I also believe that if you get really stressed out it makes it worse. My husband has noticed that happening. I have problems breathing as well due to the saddle nose and when it is 100 degrees here and the humidity is like 115 it makes me alot worse. I also have an inhaler now and it does help.

[annekat]

Annekat I relate to the family not understanding at all. One day I can be great next day I can't even function and they say you were fine yesterday. My Dr explained to them there are good days and bad days you never know when it's going to be.it's hard to make plans to do things because some days you are more tired and exhausted. Then when you cancel there response is I knew it. That makes me so aggrevated. It's hard to understand unless you are actually going through WG. That's why I am glad I was able to find this site. I also believe that if you get really stressed out it makes it worse. My husband has noticed that happening. I have problems breathing as well due to the saddle nose and when it is 100 degrees here and the humidity is like 115 it makes me alot worse. I also have an inhaler now and it does help. Well, I live alone, and the family members I see are mainly siblings, and I guess I can't expect them to get it as well as if they actually lived with me. It sounds like your husband sees the effect of stress on your symptoms and overall well-being; that is good. I think it is this way with all auto-immune diseases, most likely, and if you put together everyone who has those, it adds up to quite a few. So the public needs to be educated that an AI disease will affect people this way, and that's just the way it is! Living alone, I probably get to avoid stress and too much activity involving other people, a lot more than someone with a spouse and kids. I don't know how people do it with so much going on in their lives, and they need all the support and understanding they can get from their families and friends. Unfortunately, people tend to see fatigue as something everyone has, if they lead a busy life, so have a hard time seeing our fatigue as something different. And as for canceling plans, I just try not to make too many, and I suppose they think I'm anti-social. It can get a bit better over time, and I hope it does for you.

[Green Grass & High Tides]

Hey Patrickreed!

Being able to be present with the kids is a challenge and a great treasure. Ultimately, I chose to be poor and home more with the kids. I feel blessed in that when I took that leap of faith the financial stuff worked itself out. Very hard decision and took some hard work to integrate. I pray and meditate and try to help others. I think those things help when I do them.

My first wife never could understand the wegs fatigue. She's long gone. I find that knowing and telling family members what my Activity Level is, that it helps everyone to understand.
Saying something like "I only have one activity today. I have to use it to for cardio and get organic veggies to juice." or "I have to do my strength training this am but I'd love to get dinner tonight after I rest." The wife and kids may not like it but at least we are communicating and they know what to expect. "I'm going on my walk, you wanna come?" is always a good one for the kids too. One thing is for sure. They much prefer me doing something other than talking about my wegeners!

I have three kinds of fatigue:
1. Wegeners Fatigue - This feels like total depletion and I can sense that if I keep going I'll get sick, an attack somewhere, eyes, sinus, lungs, cns, gi...somewhere.
2. Neurological Fatigue - From a wegeners stroke. Loss of electric signal telling body to move. Flat feeling. Weakness, sometimes loss of movement.
3. Medication Fatigue - Feels like sickness, tiredness, lethargy, myopathy, anxiety, aggression, depression...

Addressing #1 Wegeners Fatigue- It takes a healthy daily regimen for me to overcome. Nutrition, Restorative Sleep, Raised Anabolism, Reduce internal and external Stressors. I walk / cardio through fatigue at anything under an 8 level severity and I chart it daily. Sometimes I'm a slug, dragging across the grass but tapered exercise really helps with fatigue. If it's over an 8, I sleep. Today I slept

But dealing with family life and kids within this realm is sensitive stuff. If I don't know what my body can handle, how can I be of use to the kids?

The Stroke people suggested "KNOW YOUR ACTIVITY LEVEL".
Is it a 1, 2, 3 or 4?

The Stroke people asked: How many activities can you do per day and still maintain health?
We only have so much energy per day. How much can you do without harming your health?
That is how many activities I plan to do per day. For me that is one. Usually exercise and nutrition.

Still, the fact is, sometimes I sacrifice my health to make sure there is food on the table and to spend time with the kids.
Fatigue is the least of the dangers of that lifestyle, at least long term for a weggy, but I try to balance it.

[Jayne 14]

The fatigue we feel is hard for anyone to understand . Getting close friends / family to read the spoon theroy helped . And understanding my body too .
Big day = next day sleep / recover .
Pace yourself .
And try to accept the new normal


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[jakekell]

Fatigue is also my issues, has been from the onset of wegs about 9 years ago. I am finally losing some of the pred weight I gained, helps some. I think it is just part of it and very tough for other's to understand because "we look so normal".

[Birdie]

I wrote a long post asking for input on fatigue. Happy I searched before posting that one cause wow... it really is a major problem for everyone.

What the heck, I'll post it here since it's yet another description of the issue.

My main problem is fatigue. It's extremely most awfuly horribly bad. Pain in muscles which is isolated to small areas but never goes completely bye-bye, is severe for an hour or two at a time... a few times a day.

Fatigue is worse in the morning, every morning. I am absolutely non functioning when I wake up. Insufficient energy in muscles to walk or stand. The situation slowly improves as the day progresses. By noon on most days I can walk around the house a bit, do dishes or a load of laundry, then rest three or four times as long as I was on my feet.

Between 3:00 and 7:00 pm I usually get to a point where I can leave the house for groceries or whatever, as long as it's something I can do from a wheelchair. I go to bed in pretty good shape and wake up to start the cycle over again.
It started a few weeks into 80mg of prednisone. In the last three years I have had periods with little fatigue but they were always ended by some other issue that wore me down fighting it.

Is this a common definition of fatigue?

[annekat]

Your fatigue sounds a little worse than mine was even at the beginning stages of treatment, but yes, it is always there, and I still have it at some point in every day. Usually, I need a slow, methodical morning before I can really get going on anything or go anywhere. Unless I'm committed to be somewhere early, in which case I can rise to the occasion, but will need to rest when I get home and the next day may be pretty well shot, depending on how long I was gone and what I did. I think I already contributed to this thread, so will not go on and on. If you still have a lot of disease activity, that would explain a lot of it, but most of us deal with it indefinitely, even if in remission, I think. It could be due to the damage done to our blood vessels and whatever organs were involved. I get out of breath a lot faster now because of permanent damage to my lungs, even though it isn't as bad as some people's. And I figure damaged blood vessels aren't as good at carrying and delivering the oxygen that we need to optimally maintain our energy level and other vital functions. Plus many of us are middle aged or older, when this would be happening anyway.... which makes it all the harder to impress on people that our fatigue is something different and above average. Some on here, though, even the middle aged ones, have been good about exercising most days, even just walking, which I'm sure boosts energy levels, circulation, etc. We just have to start slowly with this and not overdo it. (I'm guilty of "meaning to" get out and walk every day and not doing it.)

[Pete]

Gary,

Have you been tested for chronic fatigue syndrome? I don't know how it's diagnosed. I do know that just because you have GPA/Wegener's doesn't mean you don't have something else...

[Birdie]

Anne, the details of your fatigue seem to exactly match my situation, perhaps a bit less severe. That is what I was looking for, confirmation that we're taking about the same thing when using the word fatigue. THANK YOU.

[Birdie]

Gary,

Have you been tested for chronic fatigue syndrome? I don't know how it's diagnosed. I do know that just because you have GPA/Wegener's doesn't mean you don't have something else...

Never heard of chronic fatigue syndrome. Until WG I was always the highest energy person anywhere. Up at 5 am and didn't slow down until at least 9 pm. Didn't have TV most of my life, didn't have a sofa or any other padded cushioney furniture in the house, never sat down unless the activity required it. This change is difficult.

[me2]

I wanted to share the spoons thing with Gary but I can't find it. Does anyone know how to find the original post about it? I wouldn't mind reading it again too.

Gary, I was once much like you. I was very high energy and able to pack a lot into just one day. My adjustment to years of hospitalization, treatment , illness, pain, and debilitating fatigue has happened through a combination of things.

One, was acceptance of things as they are. This was the most difficult. Just realizing that today I feel bad, probably will tomorrow and have given up on my deeply optimistic nature. I started to tell people that I was a defeated optimist. (Beaten by WG)
Acceptance of my lot ironically freed up some energy for just living day to day. Finding what value and happiness I could literally hour by hour. I might feel like crap and be bed ridden until noon but hey ,
about one oclock I felt ok. Not great but ok ,then maybe by 3 I would sink into the pit again. Well, I had a couple of good hours. That was just it. That was all I would get. So, I appreciated just those two hours. Acceptance allowed me to let go of my former orientation to life and activities and set my sail on a gentler wind.

An important part of this process for me was seeking help from a Jungian psychologist that I knew. I had been part of a study group he founded about twenty years ago and I felt comfortable seeing him.
I guess my struggles were interesting enough to him because I became one chapter in a book he wrote. I never expected my claim to fame to be as a crazy guy - but hey, I'm working on that acceptance thing right? I'm doing pretty well in a lot of ways right now but still not what I 'expected' in life. So, I'm still working on acceptance , and I still see my psychology guy.

Then, there is always the chance of grace landing on your situation. I have struggled for about 15 years with relapse. You can find some of what I went through in this web site. Many, many hospitilizations, surgeries, chemo of every color and stripe, loss of relationships, loss of work, loss of money- a regular country song. Oh, a special favorite was when I collapsed in Western China by myself with central nervous system involvement. Came back home in a wheel chair close to death and it took me two years to be able to walk to my mailbox again. Ok, now I am descending into details... back to the story-


In recent months I have regained health and energy to a degree that I gave up hoping for. I have not felt this good for 15 years. I am regaining some sanity and trust in life. Its still shaky but I'm enjoying life in some ways that were off limits to even imagine for 15 years. I'm loosing prednisone fat and regaining muscle.

Another unexpected thing was the development of Rituxan. A major new treatment- good news because I had exhausted the other options. Not some of them- all of them. There are other promising, even less toxic, treatments being developed still. Hey, even the invention of the internet is a massive part of my story- and totally unexpected. I had this illness for 17 years never having talked to or met another person with WG.

The internet and Marilyn Sampson who founded the Vasculitis Foundation changed my life again. (As a side note- the first person with WG I ever spoke to was Marilyn on the phone.
I'm so happy I got to talk to her. She started the foundation with two other people over a kitchen table. Her work has blessed thousands of people. One physician at a VF conference in the early days said that the VF and WG people were the gorillas of rare diseases. He said he didn't know why but the people with WG were the most organized and active of the rare disease advocates. This is in large part due to Marilyn's work in setting it up. It is not surprising that the VF would change its name and take other rare disorders under its umbrella.)

Amazing things can happen. I have even had the pleasure of seeing this disease bring love into life- but that's another story.

Thanks for joining our group here Gary- I'm sorry about the entrance fee...

[Birdie]

Thanks for joining our group here Gary- I'm sorry about the entrance fee...

Holy crap. Ask the right question in the right way and this group really answers.

Now, what do we do about the entrance fee? Thanks to you'all I'm learning it's not as steep as I thunk it was.

[annekat]

Gary, Kirk's story above (me2) sounds more analogous to yours than mine does. My problems with WG have not been as severe as either of yours, nor was I ever as high-energy on a daily basis as either of you, so the change hasn't been as great. I think I currently have a greater window of useful non-fatigued time every day, but just don't always put it to advantage the way that Kirk would. And it is also very easy for external situations and demands to crop up that will interfere with this window of "up" time. I trust you will find encouragement in Kirk's story, and this is another example of how great this forum is. I don't know how anyone goes for 17 years without talking to another person with WG. The internet is truly a blessing, even though it sometimes gives us wrong info. This forum really helps to sort those things out. All the best to you.

[Green Grass & High Tides]

It started a few weeks into 80mg of prednisone.

Iatrogenic Cushings Syndrome (http://www.google.com/url?q=http%3A%2F%2Fwww.nadf.us%2Fadrenal-diseases%2Fcushings-syndrome%2F&sa=D&sntz=1&usg=AFQjCNHl8vjvr6wZTJGhZtgIpXB62EM-KA) may be something to ask the doctor about. I might try to get an endocrinonlogist involved and get some Baseline Cortisol Levels.
Fatigue in the am like that with 80mg of prednisone sounds like the Glucocorticoid Adverse Reaction (http://psychiatry.ucsd.edu/News/publicationsofnote/Documents/ajp13091264_rp1_REV%20PROOF.pdf) I have to prednisone. Without counteractive meds I'm slumped over, useless. It triggers my immune system as well and makes everything worse. The myopathy in this state is extreme, can barely sit or stand. However, I have major psychiatric reactions to it as well, which you don't describe. I get manic, aggression, anxiety, lethargy, mild hallucinations, insomnia, panic, all in a big way and all due to the HPA Axis damage being done from the Glucocoriticoid imbalance. Without proper counteractive medications I would be in the psyche ward on 80mg of pred, hell, 30mg does it! Extreme lethargy can be part of this Glucocorticoid reaction. There's a bunch of psyche meds we tried and looked at but very few were safe or effective. Some I tried actually triggered my wegeners, so selecting proper Synergistic HPA Axis Suppression medications has been extremely difficult.

Since 1998 the Wegeners Fatigue has never been like what Glucocorticoid Adverse Reaction fatigue is like. It's a different beast.

Hope the links help.
Best wishes,
Tom

[Birdie]

I have major psychiatric reactions to it as well, which you don't describe.

I didn't describe the psychiatric reactions since I thought they were obvious in my posts. :) I give new meaning to the term whackadoodle, and not all of it is natural.

[Green Grass & High Tides]

Sorry to hear about the psychiatric piece. Maybe your doctor will be able to determine if the Fatigue and Psych Issues are Prednisone side effects (Glucocorticoid Adverse Reaction (http://www.drrichardhall.com/steroid.htm)). If it is, studies indicate it is brain damage to the HPA Axis. It causes atrophy (http://ijnp.oxfordjournals.org/content/16/6/1351.abstract)to the hippocampus (http://www.google.com/url?q=http%3A%2F%2Fwww.medscape.com%2Fviewarticle% 2F566312_3&sa=D&sntz=1&usg=AFQjCNEt-p0BL54F4EjPxGxVWT0LVbxqmw). It may cause permanent damage (http://www.medscape.com/viewarticle/566312_3). Neuroendocrinologists are doing some amazing research right now on this stuff.

STEROIDS CAN CAUSE BRAIN DAMAGE: Read up on the long term brain damage NBC News- Jane Pauley (http://www.nbcnews.com/id/5887567/ns/dateline_nbc-books/t/jane-pauley-shares-her-story/) got from steroids. It’s not the small matter many would portray. This Steroid Psychosis (http://www.currentpsychiatry.com/home/article/corticosteroid-induced-mania-prepare-for-the-unpredictable/c2e8b70eb48fb07caabb1f0b255060bc.html)link has a bunch of info and meds. For wegeners, be careful, some of these medications they list are great for healthy people but for a wegeners patient they may trigger disease. This happened to me and I nearly died from the flare. Synergistic Medications for HPA Axis Suppression was the key for me.

Lethargy and fatigue is part of this pred sickness and I'm not sure if there is difference between lethargy and fatigue. It's a big topic obviously not just "fatigue" so I apologize but certainly interrelated.

Differentiating between Wegeners Fatigue and Medication Fatigue is important. I treat the two very differently.
T

[Birdie]

Maybe your doctor will be able to determine if the Fatigue and Psych Issues are Prednisone side effects

Ok, sorry to be less than serious. At high dose, above 40mg, pred made me way wackyer than normal. Wacky has always been my normal, I don't usually do serious very well even in stressful situations. I take things seriously but maintain perspective. Most people seem to freak out in common situations like a minor traffic accident. Geeeze, put it in perspective! So your car has a little dent. Nobody got hurt and everybody has insurance. Go to lunch with the guy who hit you, don't scream and yell at him!!!

So that's me, normally... Predsinone doesn't make me lose my mind and start screaming and yelling. It makes me explain why I'm not screaming and yelling, in perverse detail, until others want to run away screaming.

[Kvincent13]

Predsinone doesn't make me lose my mind and start screaming and yelling. It makes me explain why I'm not screaming and yelling, in perverse detail, until others want to run away screaming.
Prednisone does near the exact same to me, but then when they run away or don't understand why I'm talking so fast, the roid rage sets in. It's a pleasant blend of both. I call it prednihyde.

[Green Grass & High Tides]

"Three days after starting the first prednisone cycle, the patient became, as she described it, “higher than a kite.” She recalls being unable to sleep, lacking impulse control, and being inappropriately humorous. Her mind was flooded with unrelated thoughts, and her thinking became so disorganized that she was unable to drive." - from a 2014 paper in the American Journal of Psychiatry (http://dianafoundation.com/articles/AJP-GC-review-2014.pdf) on Adverse Consequences of Glucocorticoids. Read the case study on page 2 or 3. She doesn't have wegs but is on cytoxan and pred. Cortisol levels (http://www.ncbi.nlm.nih.gov/pubmed/25650405) can have a great deal to do with fatigue and is directly related to the prednisone damage described in the link above. I believe HPA Axis disruption like this hinders my wegeners tx and has been causing some of my fatigue even the years I was mostly off medications.

Not sure about Prednihyde, but I was telling some pretty inappropriate jokes there for a bit and then laughing hysterically, uproariously, before a sudden violent rage would settle in; an hour later I'd be slumped over for 12 hours straight too weak to interact, too jacked up to sleep, lethargic, fatigued. Brain damage. Steroids. Medication Fatigue. Treatable.

Wegeners Fatigue... who knows?

[Birdie]

"Not sure about Prednihyde, but I was telling some pretty inappropriate jokes there for a bit and then laughing hysterically, uproariously, before a sudden violent rage would settle in; an hour later I'd be slumped over for 12 hours straight too weak to interact, too jacked up to sleep, lethargic, fatigued. Brain damage. Steroids. Medication Fatigue. Treatable.

Dude, (sorry, 70's kid here)

I feel like I've been locked up in the Cuckoos nest. It's OK tho because it's where I belong. Apparently. I only had a sleep problem for a few weeks and instead of anger I get frustrated, otherwise same-same. Also I get what I think of as mental tunnel vision. Call it analosity? Can't let go of a thought until you think it into the ground about ten times over? That's analosity.

Now, everybody who smokes (cigarettes that is) raise your hand. OK, the rest can stop reading now. Next time a doctor (nurse, hospital janitor, etc.) starts lecturing you about smoking just repeat these words: "Your SCP is showing". They will likely ignore you and continue the lecture. Wait one or two seconds and say: "Your SCP is showing." Rinse and repeat until they finally ask what you're talking about, at which point you say: "Your SCP is showing, don't tell me you've never been diagnosed?" You get (yes, I know from vast experience in this exact scenario) a puzzeld look which is your que to take over and run the show. "Seriously, you've never been diagnosed before? A case as bad as yours and you don't even know you've got it?" You have to play it by ear from here on but the intent is to stop them wasting half of YOUR appointment, every appointment. However the discussion goes, however long you have to play the game before you finally get their attention, it ends by telling them SCP is Smoking Cessation Psychosis, and they've got it bad, and I'd appreciate it if they would not waste my precious time with them. I've dumped about ten doctors who would not stop, ever. I'm better off without a doctor like that, they're brainwashed robots and no good to me at all.

My wife was refused care by several doctors, they would not even take an appointment because she smoked and it was one of the first questions she was asked on the phone.