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View Full Version : How many here will admit to having had a steriod induce psychosis?



drz
09-15-2010, 12:43 PM
I was wondering how many will admit to having had a psychosis from taking large dosages of steroids like prednisone or Solemedrol. People often don't remember these states but sometimes they can be rather funny. And sometimes upsetting to family who don't understand what is happening to their loved one?

pberggren1
09-15-2010, 02:23 PM
I don't think I can remember ever flipping out while on Pred but then again Pred seems to affect the memory as well.

Jack
09-15-2010, 06:34 PM
I have a bit more trouble controlling my emotions, but nothing to the extent that it would require treatment. In fact, the effect may just be due to the years of stress handling the disease.

misskay
09-15-2010, 10:18 PM
I'll admit to being much more emotional while on high doses of Pred. I'm usually a 'rock' and I seem to cry at the drop of a hat now... and can get angry pretty fast, but also get over it pretty fast... but nothing myself or anyone around me would label out of control in any way...

Psyborg
09-15-2010, 10:28 PM
I'm pretty much a ticking time bomb, unfortunately. I'm an absolute pain the butt for my family to deal with at times right now. The weird part is I'll flip out and the whole time part of my mind is thinking "what in the world are you mad about??"

Geoff
09-15-2010, 10:51 PM
Hi DRZ,

I recall when I was first in hospital, having high doses of pred intravenously at odd hours through the day and night being totally fixated as to when my next 'fix' was arriving! After the sick, coma like existence I had found myself in before DX, I was so high that I could have run home down the motorway and set off all the speed cameras! Currently only on 5mg but feeling like my brain has been chewed. Like you Phil, I believe my memory has gotten very poor, but I cant remember when this first started. (sorry)

Sangye
09-15-2010, 11:11 PM
Psychosis is very different from the usual mood changes that high dose pred causes. It means losing touch with reality--hallucinations, delusions, etc.... Steroid-induced psychosis is not that common.

When I was initially on 1,000 mg IV solumedrol, I was aware of extreme agitation and racing mind. I could go from elated to crying instantly. That continued until I got down to around 25 mg pred I think. Not psychosis, but scary enough!

drz
09-16-2010, 10:34 AM
Psychosis is very different from the usual mood changes that high dose pred causes. It means losing touch with reality--hallucinations, delusions, etc.... Steroid-induced psychosis is not that common.

When I was initially on 1,000 mg IV solumedrol, I was aware of extreme agitation and racing mind. I could go from elated to crying instantly. That continued until I got down to around 25 mg pred I think. Not psychosis, but scary enough!

How long were you on those high dosages? In my hospital they said it happened a lot at those high dosages. With mania patients became grandiose or rather paranoid. Sort of like being drunk, some became very happy and some became angry and paranoid. The staff were very good a working with patients in either state but found the happy ones more fun, especially when they could joke with them after the psychotic delusions had faded.

At lower dosages like 50-60 and under they talk about impatience being a common side effect of prednisone. That doesn't seem fair since Wegener's seems all about learning patience at least in our recovery.

Sangye
09-16-2010, 10:48 AM
I was on 1,000 mg for 3 days, then down to 60mg and tapered from there over the course of 7-8 months.

Mania is very different from psychosis, though someone could have both at the same time.

I agree with you about the impatience thing. Makes the whole situation much more difficult when you have to take a drug that causes impatience, anger, anxiety and depression!

marta
09-16-2010, 11:51 AM
I'm pretty much a ticking time bomb, unfortunately. I'm an absolute pain the butt for my family to deal with at times right now. The weird part is I'll flip out and the whole time part of my mind is thinking "what in the world are you mad about??"

That sounds a lot like PMS Psyborg, :lol: from what I remember before the days of cyclophosphamide. :w00t:

Psyborg
09-17-2010, 07:51 AM
How long were you on those high dosages? In my hospital they said it happened a lot at those high dosages. With mania patients became grandiose or rather paranoid. Sort of like being drunk, some became very happy and some became angry and paranoid. The staff were very good a working with patients in either state but found the happy ones more fun, especially when they could joke with them after the psychotic delusions had faded.

At lower dosages like 50-60 and under they talk about impatience being a common side effect of prednisone. That doesn't seem fair since Wegener's seems all about learning patience at least in our recovery.

Ok good point...I think I took the rather loose version of psychosis there sorry. Though I do feel rather psychotic at times when not controlling myself properly.

I would say that I have had incredibly intense dreams since I started on Pred, that is as close as I get to hallucinations :)

drz
09-17-2010, 11:10 AM
Ok good point...I think I took the rather loose version of psychosis there sorry. Though I do feel rather psychotic at times when not controlling myself properly.

I would say that I have had incredibly intense dreams since I started on Pred, that is as close as I get to hallucinations :)

Anyone here try Ambien for sleep while doing in patient treatment for Wegener's? My family thought it would be "safer" than Seroquel for sleep but it gave me horrible nightmares and delusions that kept me awake all night. I spent most of night trying to escape from the terrorists who had captured me.

Sangye
09-17-2010, 11:22 AM
I took Ambien twice when I was outpatient. The first time I thought it gave me hallucinations but I wasn't sure. The second time I found myself sitting up in bed "counting my tentacles." I remember it clearly. (My PCP asked me how many tentacles I had. Six, which we both thought was strange.)

That was in 2006, before the manufacturers admitted that Ambien causes terrible hallucinations and even causes people to drive or eat in their sleep. Nurses have told me they hate it when patients are on Ambien, because they often tear out their IVs in the middle of the night.

I took Lunesta twice also. It made me rageful the next day. That's also a side effect they just began to list. These drugs should be taken off the market.

Geoff
09-17-2010, 05:51 PM
I would say that I have had incredibly intense dreams since I started on Pred, that is as close as I get to hallucinations :)

Got to agree with you Pysborg about the dreams. I have been on sleeping tablets (Zoplicone) for over a year as either I was unable to get to sleep (racing mind) or I had such restless sleep that i woke absolutely shattered in the morning. Not a good start to the day! Alhtough I am on my lowest dose of pred (5mg) and have been for a 3 month run, I feel my brain has been fried and I am making silly mistakes at work and forgetting everything and anything. Seriously considering getting some therapy to sort me out mentally.

jola57
09-17-2010, 06:16 PM
When on high pred (60) my usually even temper had a short fuse, but that was all. However, years ago one of dialysis patients in cancer clinic where I worked had a bad case of psychosis from a high dose of pred (sorry but don't remember how much) and thought that he was being irradiated with cosmic rays. It took me some time to convince him that I would not work in the hospital while 6 months pregnant if there was any danger. He was fine after a few hours and didn't remember the episode. I do not take anything to help me sleep just ride it out by watching videos and reading even if it lasts a few days. I simply catch on my sleep later.

Jack
09-17-2010, 06:21 PM
Agree with you on the sleeping pill thing. I used to just get up and watch TV for a while or resign myself to just resting rather than sleeping, but then I always had the option of not working the next day if I was not feeling up to it. (although I did always go in with the thought that I would feel better later. ;) )

jola57
09-17-2010, 06:35 PM
Exactly Jack, I was nevery realy so tired that i couldn't function, just in a slower mode.

Geoff
09-17-2010, 06:57 PM
'Slower Mode' is normal, No Sleep = Wipe Out! Fell asleep at work with my head on the desk once. Soooooo embarrasing when my boss woke me up and suggested I go home.
Still cannot remember how I drove home! must have been on Auto Pilot.

jola57
09-17-2010, 07:19 PM
Funny about you boss, not so funny about the drive, Yikes

elephant
09-17-2010, 09:43 PM
I am on 7 mg of prednisone and still forget things, and some nights I don't sleep that great. I am glad I don't work now, I would be fired in two minutes.

Sangye
09-17-2010, 11:10 PM
Memory and cognitive issues are a big reason why I haven't been able to work, on top of the physical stuff. :blink:

misskay
09-17-2010, 11:36 PM
I have been taking Lunesta for several months with no problems.... until the other night. Nothing horrible, just sleepwalking around the house and then ate most of a box of chocolates :/
Threw the bottle away the next morning. Having a hard time sleeping again, but better than the alternative.

Sangye
09-18-2010, 12:27 AM
Yikes-- glad you got rid of it! They say many of the "events" happen without remembering them. Any chocolate been missing lately? :wink1:

Psyborg
09-18-2010, 05:33 AM
Anyone here try Ambien for sleep while doing in patient treatment for Wegener's? My family thought it would be "safer" than Seroquel for sleep but it gave me horrible nightmares and delusions that kept me awake all night. I spent most of night trying to escape from the terrorists who had captured me.

Funny I posted about the dreams and had a really intense one again last night. I slipped and cut a massive wound on my leg that was bleeding everywhere in the dream. I woke up still feeling the pain and the dampness...for a couple seconds then it went away LOL.

I've been taking Unisom to help sleep as my sleep is awful unassisted now. At least now I'm scaling back on Pred so that should help.

marta
09-20-2010, 04:34 PM
Where are you at with the pred Psyborg? I too can't sleep AT ALL and am on 17.5mg as of today. I haven't taken any sleep aids and am thinking that I'll hold off as long as I can. Luckily, as I mentioned somewhere else, I've had some recent training in sleep deprivation being the mom of a three year old who likes to wake up NUMEROUS times during the night and has since birth.:wink1:

elephant
09-20-2010, 08:32 PM
Marta do you take naps during the day to help with the sleep deprivation? Are you able to take a slow walk?

Geoff
09-20-2010, 08:41 PM
[QUOTE=marta;25686] I haven't taken any sleep aids and am thinking that I'll hold off as long as I can.
Hi Marta, I had extensive Reiki sessions to try and help with my sleep deprivation but had to go down the route of sleeping tablets in the end. I was told they are 'non-addictive' (Zoplicone) and have helped immensely. I am currently on my lowest pred doseage of 5mg after 28 months since DX. P.S even with the tablets, the dreams are in 3D with surround sound! Its cheaper than going to the flics!

Sangye
09-20-2010, 10:01 PM
Try acupuncture.

Psyborg
09-21-2010, 04:11 AM
Where are you at with the pred Psyborg? I too can't sleep AT ALL and am on 17.5mg as of today. I haven't taken any sleep aids and am thinking that I'll hold off as long as I can. Luckily, as I mentioned somewhere else, I've had some recent training in sleep deprivation being the mom of a three year old who likes to wake up NUMEROUS times during the night and has since birth.:wink1:

I just started the scale down of Pred and am at 35 mg a day...so still pretty high.

jola57
09-21-2010, 11:22 AM
My dreams, when I remember them and if indeed I do dream, are tame in comparison. I snore and my hubby keeps whacking me just to make sure I am alive because I stop breathing for a long time. I thik it is time for a sleep study. Just heard from someone in my office that her husband has been on a waiting list for 3 1/2 years to see a specialist. I guess no lala land for me till then.

Sangye
09-21-2010, 11:31 AM
Yikes, Jolanta.... that can be deadly. It also can cause heart problems. I'm sure you know this. I bet they could get you in sooner since you have Wegs.

pberggren1
09-21-2010, 12:09 PM
My mom snores like crazy and has for years. I've told her I am worried she has sleep apnea and that it can be very dangerous. But she has never gone in to see the doc about it or gone for any tests that the doc ordered in the past. She is worried they will find something that is not good. So this stresses me out too. I wish she would just trust me and go see her doc.

marta
09-21-2010, 02:46 PM
Marta do you take naps during the day to help with the sleep deprivation? Are you able to take a slow walk? No I don't elephant. I use to when I first started 'the cocktail' - it totally knocked me out, but not anymore. I also seem to try and fit in way too much in each day, so can't find the time for it. I know, I know, I need a spanking. If my mom read this, I would probably get one.


Hi Marta, I had extensive Reiki sessions to try and help with my sleep deprivation but had to go down the route of sleeping tablets in the end. I was told they are 'non-addictive' (Zoplicone) and have helped immensely. I am currently on my lowest pred doseage of 5mg after 28 months since DX. P.S even with the tablets, the dreams are in 3D with surround sound! Its cheaper than going to the flics!
My mom's a Reiki MASTER Geoff, but do you think I use her... noooooo. She lives 400km from me, but there is a way she can do it long distance. I just have to call her and tell her what I'm doing when I want it. I've been avoiding it because she's got her own bag of pains to deal with (actually her and I were experiencing EXACTLY the same symptoms when I got diagnosed, just not the same intensity, or so she says). She still has crazy ear pain, and headaches, and is in the process of consulting with an ENT about it, just had a CT scan two days ago, so right now she's got more pain than me as mine is sporadic and on some days non existent.
Zoplicone, hey? I'll hold off until I'm totally desparate, and then maybe I'll venture there.

Sangye, acupuncture still freaks me out a bit. I tried it when I was having problems breastfeeding, but the motivator for that was much much greater than lack of sleep. I have a great reflexologist in Edmonton (wro shr, actually) who I'll go see next time I'm in the city. That involves mucho grande pain, but I can take it, Wegener's has trained me there. ha ha.

Psyborg, you'll be blown away at how fast you'll go down to 20 from 35, it's almost like a blink in hindsight.

Jolanta, listen to what Sangye says, as we all should... :wink1: sleep apnea is a scary scary thing. Brian's boss's friend lost a perfectly healthy son to it. It's freaky.

me2
09-21-2010, 03:21 PM
I have gotten wound up at times over long term use of 40 mg of pred or more. The duration seems to affect me more than actual dose. Its like it wears down my niceness over time until I snap. I don't go berserk or something but can snap at people when that is not my normal character at all. It is very embaressing. I lost a girl friend over it. She could not understand that it was drug induced and could only attribute the behavior to me. I am actually a nice , quiet and kind person - on steroids. I have weak spots in my character like most other people and they are magnified by long term prednisone use. Short term use doesn't seem to affect me that way.
I am currently on 16 mg and may possibly have to up my dose due to increase in symptoms lately. Prednisone in 50 mg tablets should come with a sheet on how to make new friends after you have lost your old ones.
As someone said, the long term stress of the disease plays a big part too. I didn't really realize it unitil I gained some relief after a long period of trying to fight for my life and health. I saw things very differently after that.
It is difficult to explain to others. People think you are trying to make excuses when really you just would like them to understand and be kind and forgiving.
I have started Jungian analysis last week. I will be curious to see if it has anything to offer me in the way of compensation, growth and help dealing with the multitude of challenges this disease presents.

jola57
09-21-2010, 04:52 PM
On a good note I did not snore before I got "fat", so chances are both are related and once I am down to my regular weight (hopefuly soon) then the snoring will stop. On the other hand if it is realted to my air obstruction, there is surgery. I will ask for a sleep study because my dad snored too and i remember him having a mild sleep apnea and in that case it can be hereditary.

Sangye
09-21-2010, 11:12 PM
me2, I started therapy when I got dx'ed with Wegs and I've gone once a week since then. I couldn't imagine going through this without it. I hope it helps you as much as it's helped me. Sometimes you have to try different therapists and techniques to find what works best for you.

Geoff
09-21-2010, 11:43 PM
Wow Sangye, it seems so obvious when I read your post about getting therapy. I was going to sit down and write my Weg specialist a long letter (some times its easy that way I find) to try and get a 'picture' of where I should be going.
Its all well and good getting a balance physically with the drugs, but such a large percentage of our postings are about the state of our minds.

Me2, can you give us a precise of Jungian therapy?

me2
09-22-2010, 03:08 AM
The brief explanation of Jungian therapy is working on connecting the conscious with the unconscious. I have posted a link below that I found that gives a very good brief description of the more detailed aspects of the therapy. I have been working with Jung's ideas for over twenty years. I have found his ideas to be very helpful to me. Lately though I have been having a feeling of being 'stuck' in a way that I have not experienced since I was quite young. I feel out of balance. So , I am getting someone to help me.
One thing I like about the idea of Jungian analysts is that they are not only educated in a system of thought but must rigorously delve into their own psyche's and achieve some level of balance themselves before working with other people.
That being said, I had counseling many years ago that was very helpful to me. I think the most important thing is to find the right person, the system of thought is secondary.

Jungian Psychoanalysis - Jungian Analysis, Therapy (http://www.nyaap.org/index.php/id/4)

Brooke
09-23-2010, 05:20 AM
Man, I am not even on that high dose of pred right now. Was on 40 for 3 days, now 20 for 3 days and tapering down. I was off for about 3 weeks but was on 20 mg for about 6 months prior. I was moody, happy, sad, mad, everything!!
But now that I am on pred again for a few weeks my mind is already racing and I feel I can't focus.
Here is what is on my mind:
Work: lots to do at work
Health: Dont want to do Cyclophosphamide, Don't want laser treatment during bronchoscopy, Want to lose weight, want to be healthy
Home: I want to buy many things for my house, decorations for fall, rugs, mirrors, night stands, end tables
Family: Thinking about my grandma Dolly who was just diagosed a couple weeks ago with cancer again. She had it 12 years ago in the breast, now it is back in her brain, bones, breast, I feel so bad for her, she is 78.
All of this on my mind and I am at work right now and can not focus on that, eeek!
I am not depressed or mad, I'm in a great mood just a bunch going on upstairs today .......:huh:

Jack
09-23-2010, 05:38 AM
Hi Brooke,
I'm sorry, but you may have to come to terms with the fact that some of this stuff is outside your control and maybe there is not going to be much you can do about it right now. I used to always be on top of every situation, but I have given myself permission to let things slide a little and discovered that the world is not much the worse for it. Now is the time for looking after your own health and the other stuff can wait. I'm sorry to hear about your Grandma, but again, there is not going to be much you can do about the situation so you should not beat yourself up.

Brooke
09-23-2010, 06:00 AM
Hey Jack -
I know a lot of it is outside my control right now. I don't think I realized how much pred made my mind race until I was off of it for a while and now back on! I guess I was on an antidepressent for anxiety while I was on pred so that probably helped calm my mind quite a bit. I am not going to go back on that unless I will need to be on pred for a longer period of time, right now I am weening off and should be done in a few weeks.

elephant
09-23-2010, 09:52 AM
Brooke, my mind races but at a slower pace since I'm only on 7 mg of PRednisone. Here is an example.NNNNNNNNNNNNNNNNNEeeeeeeeeeeeeeeeedddddddd ddddddddd ttttttttttttttooooooooooo fffffffffffffffffffffffffffffffeeeeeeeeeeeeeeeeeee eeeedddddddddddd ttttttttttttttttttttttttttttttttttttthhhhhhhhhhhhh he ddddddddddddddddooooooooooog. Yea, only 7mg.:blushing:

drz
09-23-2010, 01:01 PM
At what point does the mind start to feel or act normal when you are tapering Prednisone.
I just got Prednisone levels cut from 25 to 20 today as lab results were good and inflammatory markers are continuing to decrease. Am I likely to notice any effect from such a cut and if so how long will it take.

elephant
09-23-2010, 07:50 PM
drz, I can only say that I felt close to normal when my prednisone was down to 10 mg. Everyone is different, I could not wait to feel normal again. My personality on prednisone was more truthful and bold!

Geoff
09-23-2010, 09:15 PM
Got to agree with you Elephant, I have been on pred for over 2 years now and have got it down to 5mg a day for the past 2 months but I still have 'racing mind', mood swings and butterfly brain (unable to concentrate on one thing for more than............

Brooke
09-23-2010, 11:06 PM
Lol Elephant and Geoff, I hope our minds settle down a bit!
My mom thinks I need to try yoga, I tried 1 or 2 classes last year but I wasn't really into it. Anybody else try yoga?

Jack
09-23-2010, 11:21 PM
Yes, I practised yoga regularly for many years, but don't do it at the moment. Having said that, I think that once you have learned a few techniques and developed a certain attitude of mind it never really leaves you.

Sangye
09-24-2010, 12:01 AM
I also did yoga daily for many years before Wegs. I haven't been able to do it since. I agree with Jack-- the mindset and mental skills learned stay with you. If you can do yoga (or tai chi or chi gong) I highly recommend it.

Sangye
09-24-2010, 12:03 AM
Got to agree with you Elephant, I have been on pred for over 2 years now and have got it down to 5mg a day for the past 2 months but I still have 'racing mind', mood swings and butterfly brain (unable to concentrate on one thing for more than............
The imbalances in brain chemistry and overall endocrine function caused by pred can continue indefinitely even if you stop pred.

Brooke
09-24-2010, 12:29 AM
I might have to look into that again and give it another try

elephant
09-24-2010, 01:34 AM
I do not like yoga, but loved meditation. I wish I like yoga...I tried many times...even paid for classes that I barely attended. I will try it again, but buy a DVD ( Yoga).

Jack
09-24-2010, 01:46 AM
Don't forget that Yoga practice comes in a wide variety of styles. I used to enjoy going to yoga events and sampling other aspects which varied from Eastern style Mystic through Western style Visualisation to something like a Cardio Vascular Workout! My own favourite consisted of low impact postures and breathing followed by a session of Yoga Nidra relaxation / meditation. You need to find the style that suits you best if you are to enjoy it.

Sangye
09-24-2010, 02:00 AM
Yoga Journal has great videos for beginners. I used them to learn the basics and then practiced on my own or with other videos from there. Jack's right about all the styles-- gotta find what you like. And you also have to enjoy the teacher, too.

Sean48
09-24-2010, 05:18 AM
I did yoga for about 6 months and really enjoyed it. I keep saying I am going to startt up again. I found a great improvement in my breathing and my mindset. I slept better and to this day when I can't sleep I go to my breathing and it helps. This I learned from the meditation part of the yoga. The one I did was a gentle one. Mostly stretching and holding positions. The more I did it the longer I held the pose and that made me happy.

Twice
01-06-2012, 06:40 PM
I've just woken up after a horrid restless night, but I have to admit that I made a basic schoolgirl error. After tossing and turning and spinning and whorling for a few hours I ended up watching a Discovery documentary about Rose West. Spent the next few hours fighting her off as she tried to bury me under piles of duvet. Fool! Will try to remember to watch something benign next time.

pberggren1
01-06-2012, 06:50 PM
I've just woken up after a horrid restless night, but I have to admit that I made a basic schoolgirl error. After tossing and turning and spinning and whorling for a few hours I ended up watching a Discovery documentary about Rose West. Spent the next few hours fighting her off as she tried to bury me under piles of duvet. Fool! Will try to remember to watch something benign next time.

This sounds scary. Who is Rose West?

Twice
01-06-2012, 07:28 PM
Eeek! If you don't know, Phil, it's probably best to leave it that way!

annekat
01-07-2012, 03:09 AM
Eeek! If you don't know, Phil, it's probably best to leave it that way! Eeek is right! After that, I had to google Rose West. That's what I suggest anyone does who wants to know who she is.

Anne

Sangye
01-07-2012, 03:40 AM
Yikes, I also googled her name! :ohmy:

Palmyra
01-07-2012, 05:03 AM
Back to the subject of the thread...my daughter had a steroid induced psychosis while on 70mg of oral prednisone. One must consider she was 14 and weighed ~110 lbs at the time, but I would suggest steroids cause mood lability/changes and alter rational thought at much lower doses.

Pseudobulbar affect - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Pseudobulbar_affect)

Dirty Don
01-07-2012, 08:33 AM
Well, I'm not sure this was even psychotic, BUT as the docs pumped me full of high dose pred along with propofol, fentanyl, and some other begins with a D, I 'imagined' I was fighting Quaddafi and Storm Troopers...IN my ICU!! LOL...one nurse later said I was a riot, but was considered a risk so they kept me on that stupid little beeper in my bed every time I moved! Jeez! Anyway, ALL the drugs do something different to all of us, some just have more fun! The best to you in the latest WG adventure...you will get thru it!

Sangye
01-07-2012, 02:20 PM
I agree with you, Palmyra. It's good to see you, BTW. :smile1:

Palmyra
01-08-2012, 03:05 PM
:ohmy:OM, how I need friends...you have no idea. Thanks for the sentiment Sangye.

Lightwarrior
01-09-2012, 06:49 PM
:ohmy:OM, how I need friends...you have no idea. Thanks for the sentiment Sangye.
We are here for you. I agree with Sangye...it is so good to hear from you. I am sending you light and healing energy.

Param
01-09-2012, 09:21 PM
Hi.................my dad is going through extreme depression and not eating anything after he contracted herpes around his mouth a week back................I dont know how to deal with it................doc has put him on anti dip medications................he is extremely week.............not even opening his eyes .....tests are all clear...........so any help???

KathyB
01-10-2012, 02:52 AM
I heard about the wild mood swings and was told to expect emotional outbursts. Mine were more tearful than anything & probably often enough! I started with that mega-prednisone/steroid pack for about the first week in the hospital then was on 90 mg/day to start my out-patient treatment tapering off til I contracted pneumonia in October when they upped it back to 60/day. Here in January, I'm now down to 10/day for another month with no significant emotional reactions. (I wonder if my hubby would concur! LOL!)

Al
01-10-2012, 06:26 AM
Hi.................my dad is going through extreme depression and not eating anything after he contracted herpes around his mouth a week back................I dont know how to deal with it................doc has put him on anti dip medications................he is extremely week.............not even opening his eyes .....tests are all clear...........so any help???

There are different kinds of herpes viruses, but to weggies, they are all mean and ugly. Since I had chicken pox as a kid, I got the shingles vaccine. But, while my immune system was depressed, the virus got me anyway. That was a terrible two months for me (the feeling of not being able to do anything, along with the constant pain and itching, can easily lead to depression), and more than a year later, I still have the occasional shooting pain. Since your father's involvement is facial, the doc might want to do an fMRI. (The virus goes after nerves; those from the face to the brain are very short, and can get chewed up quickly.) This is truly nasty business; I would say your father needs all the support he can get.

Al

annekat
01-10-2012, 12:28 PM
There are different kinds of herpes viruses, but to weggies, they are all mean and ugly. Since I had chicken pox as a kid, I got the shingles vaccine. But, while my immune system was depressed, the virus got me anyway. That was a terrible two months for me (the feeling of not being able to do anything, along with the constant pain and itching, can easily lead to depression), and more than a year later, I still have the occasional shooting pain. Since your father's involvement is facial, the doc might want to do an fMRI. (The virus goes after nerves; those from the face to the brain are very short, and can get chewed up quickly.) This is truly nasty business; I would say your father needs all the support he can get.

Al Hmm... I have been prone to cold sores (mouth herpes) all my life, and of course they mainly happen during periods of stress, bad nutrition, lack of sleep, when fighting off another virus, etc. Strangely enough, although I've had a few try to take hold since knowing I have Wegs, I've somehow been able to nip them in the bud and most of them haven't gotten too out of hand. I do have an herbal preparation that seems to subdue them once they've started, plus I take lysine every day. I don't know, I'm just surprised that being immunosuppressed, I'm not having more of a problem with them. Other possible remedies for them are Abreva (which didn't work for me but has for friends) and Lysine ointment, and I'll give the name of the herbal product I use to anyone who wants it. However, the docs at the hospital probably have some advanced treatments for it and know how to check for serious complications; I know it can spread to the eyes, so he should be careful not to touch his eyes after touching his mouth.

In any case, yes, it can make a person miserable, and not wanting to eat or do anything with one's mouth is understandable with a serious outbreak. It would be upsetting to someone who hasn't had it before and also has Wegs. Now that your dad has it, the virus will stay in his body, but the episodes may be few and far between, or not, and varying in severity. I'm just sorry that he has it at all, and I hope that this is the only bad outbreak he'll have, and that the docs can control it in some way.

Anne

Al
01-10-2012, 12:59 PM
Hmm... I have been prone to cold sores (mouth herpes) all my life, and of course they mainly happen during periods of stress, bad nutrition, lack of sleep, when fighting off another virus, etc.

The virus that causes cold sores and such is related to, but not the same as that associated with chicken pox and shingles, Anne. But they are both life-long after an initial infection. They can remain dormant for decades, only to come out to play during periods of stress, immuno-suppression, or both. As they go after nerve cells, they can be extremely painful. There are anti-virals that can reduce "viral shedding", and hence much of the itching and contagiousness, but they must be started within 24 hours of the outbreak.

Not much seems to be known for sure about the use of lysine products, though there is a lot of hype. Exogenous lysine (an essential amino acid) is needed by the body, though how much is unclear. It is a serotonin antagonist (serotonin is one of the better known neuortransmitters, and is active with a lot of nerve activity (and not just in the central nervous system), so there may be something to the herpes connection.

Al

annekat
01-10-2012, 01:26 PM
The virus that causes cold sores and such is related to, but not the same as that associated with chicken pox and shingles, Anne. But they are both life-long after an initial infection. They can remain dormant for decades, only to come out to play during periods of stress, immuno-suppression, or both. As they go after nerve cells, they can be extremely painful. There are anti-virals that can reduce "viral shedding", and hence much of the itching and contagiousness, but they must be started within 24 hours of the outbreak.

Not much seems to be known for sure about the use of lysine products, though there is a lot of hype. Exogenous lysine (an essential amino acid) is needed by the body, though how much is unclear. It is a serotonin antagonist (serotonin is one of the better known neuortransmitters, and is active with a lot of nerve activity (and not just in the central nervous system), so there may be something to the herpes connection.

Al I thought since Param said it was herpes around his or her dad's mouth and didn't mention chickenpox or shingles, that the herpes in question was the type that causes cold sores on the mouth. I've heard that many people have the virus in their bodies but not all have the outbreaks; it would follow that an immunosuppressed person might have them for the first time after a lifetime without them.

It seems I have fewer of them since taking lysine every day. I used to find lysine ointment helpful but somehow it stopped working as well. The herbal stuff I use contains aloe, Oregon Grape root, goldenseal, comfrey, and some other stuff, and is not intended specifically for cold sores but a cold sore product was discontinued and this has some of the same herbs. It is very true that these and other treatments should be started ASAP after feeling the first tingle of a cold sore. I had a prescription once for Acyclovir, I think it was; probably one of the anti-virals you were talking about, but never filled it because it was too expensive at the time.

Anne

Al
01-10-2012, 01:59 PM
I thought since Param said it was herpes around his or her dad's mouth and didn't mention chickenpox or shingles, that the herpes in question was the type that causes cold sores on the mouth. I've heard that many people have the virus in their bodies but not all have the outbreaks; it would follow that an immunosuppressed person might have them for the first time after a lifetime without them.....

Param did not specify which kind of virus the father has, but either can be miserable on any part of the body, and around the face can lead to additional grief, as you point out. I am not surprised that this would lead to depression. For one thing, you feel like you are worthless, which can in itself lead to a downward spiral. And you are in serious pain, meaning that you cannot imagine life being fun ever again. Indeed, you cannot even remember what fun is. The first item of business, then, is to reduce the pain.

Al

Sangye
01-10-2012, 02:27 PM
Param, I hope your dad finds some relief for his pain and his depression. Both are miserable!

Palmyra, we are here for you any time. :smile1:

Param
01-10-2012, 04:21 PM
Thanks all for your reassuring words.............his herpes is better but depression is wut is really bothering us.......................he has got a food pipe through his nose which is an added pain and still not eating anything.........infact he is taking out everything that I forcefully feed him.................but doc is saying that it is a 3 week cycle and he will be ok..............lets hope ...............shall talk to his doc about effecting his nerves............

thanks once again

Al
01-10-2012, 05:21 PM
Thanks all for your reassuring words.............his herpes is better but depression is wut is really bothering us.......................he has got a food pipe through his nose which is an added pain and still not eating anything.........infact he is taking out everything that I forcefully feed him.................but doc is saying that it is a 3 week cycle and he will be ok..............lets hope ...............shall talk to his doc about effecting his nerves............

thanks once again

Hang in there, Param. Three weeks is a long time for dealing with this, but you have to be the strong one for now. Please check back with us. We are concerned for both of you.

Al

delorisdoe
01-11-2012, 05:39 AM
Prednisone just made me reallllllly angry. scary angry.

LisaMarie
01-11-2012, 08:28 AM
It is part of our roller coaster...Ivan get so mad then cry...I try to keep it.in check being on 10mg is so much easier then 60mg

Al
01-11-2012, 12:20 PM
Prednisone just made me reallllllly angry. scary angry.

Ah, the well-known pred-rage syndrome. I didn't get angry, actually, at real-live humans--well, just a little bit. Mostly, I raged at the fates--claimed they got the wrong guy sort of thing.

Al

Sangye
01-11-2012, 12:23 PM
Oh yeah, definitely anger. I had to bite my cheeks a lot.

Dirty Don
01-11-2012, 03:51 PM
yeah, have had to keep my mouth shut a lot, and on pred with my personality...very difficult, but I really try to not offend...something else to do while this damnably unfair disease............OOOOOPS! Slipped.......

delorisdoe
01-11-2012, 10:16 PM
Ah, the well-known pred-rage syndrome. I didn't get angry, actually, at real-live humans--well, just a little bit. Mostly, I raged at the fates--claimed they got the wrong guy sort of thing.

Al

here is the problem....I AM THE BOSS!!!!!!!! IT is my job to notice what is wrong with what my employees and correct it. The rollercoaster ride was theirs not mine. I was very constant in my anger.

A few of the crappy ones did quit-i did not just say that out loud.

I am better equiped to deal with this now.

Al
01-12-2012, 09:16 AM
here is the problem....I AM THE BOSS!!!!!!!! IT is my job to notice what is wrong with what my employees and correct it. The rollercoaster ride was theirs not mine. I was very constant in my anger.

A few of the crappy ones did quit-i did not just say that out loud.

I am better equiped to deal with this now.

Hah! I think you would be a delight to work for, Leigh--though I get the sense that would make you mad, which would be even more charming....

Al

Psyborg
01-12-2012, 09:48 AM
SO now that I'm feeling better I find myself having to resist the urge to quit my drugs. I know logically it makes no sense and would very likely put me int a flare, so it's not going to happen, but man I resent those prednisone pills every morning. Am I exceptionally weird or what? :)

Dirty Don
01-12-2012, 10:51 AM
Am I exceptionally weird or what? :)

Hardly, most of us on pred would like to be off it yesterday! Yes, do resist the urge to quit...I accidentally cut down (transposed numbers...very dumb) and paid for it for about 2-3 weeks. Good luck Bob!

Al
01-12-2012, 01:01 PM
SO now that I'm feeling better I find myself having to resist the urge to quit my drugs. I know logically it makes no sense and would very likely put me int a flare, so it's not going to happen, but man I resent those prednisone pills every morning. Am I exceptionally weird or what? :)

I would be very proud of being "exceptionally weird", Bob. But I also think you would be nuts not to resent the pred. It is a vile, necessary drug. As the saying goes, we can't live with it, and we can't shoot it.

Al

gunnyl
01-12-2012, 01:44 PM
If you've ever seen Full Metal Jacket, I've turned into GySgt Hartman a few times! Few things set me off but let's just say the kids think twice before talking back to their Mother!

Sangye
01-12-2012, 03:34 PM
SO now that I'm feeling better I find myself having to resist the urge to quit my drugs. I know logically it makes no sense and would very likely put me int a flare, so it's not going to happen, but man I resent those prednisone pills every morning. Am I exceptionally weird or what? :)
I hear ya. But please do not quit your drugs. Not even for a day. Pinky swear?

Psyborg
01-13-2012, 01:00 AM
I promise I won't...I really don't want to drop back into all the issue I had through the Summer after the last time I felt better :p Though that time wasn't my fault.

KathyB
01-13-2012, 01:17 AM
So do you think we are tied to some regiment/dosage forever?! Like you all, I want off of it!

KB

delorisdoe
01-13-2012, 02:27 AM
I go years at a time drug free. Ok well almost. I am suposed to take bactrim...key word here, suposed to.

Sangye
01-13-2012, 03:52 AM
So do you think we are tied to some regiment/dosage forever?! Like you all, I want off of it!

KB
No, Kathy. Many people get off all the meds, at least for awhile. And even though I've been on something since dx in 2006, my regimens and dosages have changed a lot.