Re: Cellcept and depression

[Guest guest]

has been on cellcept since the summer. She was on 1000mg twice a day but the dose made her severely ill (nauseous and vomiting.) We had to back the dose down to 500mg twice a day with an additional 250mg before bed. It seems to be working at the moment, but I am sure they will eventually want to increase the dose back to 1000mg twice daily. We have not seen bouts of depression but that may be under control because the med they have her on for seizures also acts as an anti depressant.Hope this helps.MattSubject: Cellcept and depressionTo:

Neurosarcoidosis Date: Wednesday, January 6, 2010, 1:18 AM

I know there has been a lot of chat about people not responding but I really need your help on this one. I have been on cellcept for 3 weeks and have never felt so low in all my life. Has anyone else experienced this?

[Guest guest]

Tracie - it's summer here!

I ended up in emergency yesterday after ringing my old neurology clinic. They

were very good but thought maybe I have developed depression because of so long

living with a chronic illness and the shock of a big move. I have to see a

psychiatrist today. My neurologist just wants me to reiterate I have

neurosarcoid so that they do look into whether that is the cause. Unfortunately

this country hospital has no neurology department, which is why I'm keeping in

touch with the one in the city.

Thankyou for your responses.

>

> Rach,

> Talk with your pharmacist.  Depression isn't listed as a side effect, but

with other meds we are on-- maybe it's an side effect of interactions. 

> One thing to ask yourself is are you feeling let down because you aren't

getting the response you hoped for?  I know for myself, that was a problem with

a couple of meds I'd hope would work-- and didn't. 

> The other issue is that as we hit winter-- we spend even more time inside

and  that makes for SADD== Seasonal Affective Depression Disorder.  The cure

is to get out and get some daylight-- it doesn't have to be sunshine-- just even

the ultraviolet rays coming through clouds help to kick the Vit D process in--

and Vit d is so very important to mental health. 

> Depression is an issue we all tend ot have to deal with-- many times it's from

the unrelenting pain.  When pain interfers with our daily life, our ability to

exercise, our mobility and social life-- as well as having it disrupt your sleep

cycles, you will end up depressed.  Pain interfers with both seratonin and

noreprinephrine levels-- and those control emotions--and sleep cycles. 

Again-if your sleep is off- so it all the other stuff, and you will probably

need to talk with the doc about getting on Effexor or Wellbutrin or some form of

antidepressant.

> This is not a bad thing-- as we get our seratonin and norep levels back in

sync, much of pain and depression issues get a whole lot better. 

> BTW-- Cellcept does cause sleeplessness as a side effect.

> I'm sure others will answer-- I've not taken Cellcept-- so I can only comment

of what I can get info on as side effects and my personal experience with

depression secondary to chronic pain and sarcoidosis.

> Take care,

> Tracie

> NS Co-owner/moderator

>

>

>

>

> ________________________________

>

> To: Neurosarcoidosis

> Sent: Tue, January 5, 2010 10:18:16 PM

> Subject: Cellcept and depression

>

>  

> I know there has been a lot of chat about people not responding but I really

need your help on this one. I have been on cellcept for 3 weeks and have never

felt so low in all my life. Has anyone else experienced this?

>

[Guest guest]

LOL! Where are you at? I know Australia is opposite the States.

Ask for Neuropsych testing. This form of testing can show what parts of the brain are being effected by the sarcoidosis, and it can really help to understand what it is that is going on. For me, I have a form of early dementia (I'm only 52) and the frontal lobe--executive cortex where problem solving, multitasking, personality, sexualtiy, emotions, speech are all effected. It's worse just prior to my Remicade infusions-- but around my house, communication is an adventure....

My family has learned that when I tell them we're having spaghetti for dinner, then state the jar of applesauce is in the cupboard-- that I'm really talking about spaghetti sauce. It is at least on the "red" train-- red apples, red tomato sauce--hmm, applesauce isn't red... Oh well..

I also have a hell of a problem at a restaurant when the waitress gives me a bunch of choices for drinks-- instead of asking "what would you like to drink." If she says, do you want coke, pepsi, tea, coffee-- I can't figure it out.

Every now and then, I'll go to make something-- brownies for instance, and put the dry batter in the dish I'm going to bake them in-- instead of a mixing bowl, and I'm screwed. I can't figure out what to do next--so or Torey will come home and see it sitting there, with me frustrated to hell-- and I know what is amiss- I just can't figure out what to do about it.

Anyway, Npsych tests require specific parts of the brain to function to complete the task-- and when you can't-- they can get a clearer picture of what is going on. The crazy part is that one day you can do that task, and the next-- you can't. That happens alot when it is vasculitis that is impairing the brain functions.

(Vasculitis is inflammed blood vessels.) It can be very intermittent in what is happening.

Hope this helps,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Thu, January 7, 2010 3:34:38 PMSubject: Re: Cellcept and depression

Tracie - it's summer here!I ended up in emergency yesterday after ringing my old neurology clinic. They were very good but thought maybe I have developed depression because of so long living with a chronic illness and the shock of a big move. I have to see a psychiatrist today. My neurologist just wants me to reiterate I have neurosarcoid so that they do look into whether that is the cause. Unfortunately this country hospital has no neurology department, which is why I'm keeping in touch with the one in the city.Thankyou for your responses.>> Rach,> Talk with your pharmacist. Depression isn't listed as a side effect, but with other meds we are on-- maybe it's an side effect of

interactions. > One thing to ask yourself is are you feeling let down because you aren't getting the response you hoped for? I know for myself, that was a problem with a couple of meds I'd hope would work-- and didn't. > The other issue is that as we hit winter-- we spend even more time inside and that makes for SADD== Seasonal Affective Depression Disorder. The cure is to get out and get some daylight-- it doesn't have to be sunshine-- just even the ultraviolet rays coming through clouds help to kick the Vit D process in-- and Vit d is so very important to mental health. > Depression is an issue we all tend ot have to deal with-- many times it's from the unrelenting pain. When pain interfers with our daily life, our ability to exercise, our mobility and social life-- as well as having it disrupt your sleep cycles, you will end up depressed. Pain interfers with both

seratonin and noreprinephrine levels-- and those control emotions--and sleep cycles. Again-if your sleep is off- so it all the other stuff, and you will probably need to talk with the doc about getting on Effexor or Wellbutrin or some form of antidepressant. > This is not a bad thing-- as we get our seratonin and norep levels back in sync, much of pain and depression issues get a whole lot better. > BTW-- Cellcept does cause sleeplessness as a side effect.> I'm sure others will answer-- I've not taken Cellcept-- so I can only comment of what I can get info on as side effects and my personal experience with depression secondary to chronic pain and sarcoidosis.> Take care,> Tracie> NS Co-owner/moderator> > > > > ____________ _________ _________ __> From: rachyanne <stiks11@... >> To: Neurosarcoidosis@ yahoogroups. com> Sent: Tue, January 5, 2010 10:18:16 PM> Subject: Cellcept and depression> >  > I know there has been a lot of chat about people not responding but I really need your help on this one. I have been on cellcept for 3 weeks and have never felt so low in all my life. Has anyone else experienced this?>

[Guest guest]

Tracie I will keep you in my prayers that better days might be ahead. deals with many of the same issues here. The illness has occurred primarily on the left side of her brain and has affected speech centers, mobility, reasoning etc. There are times when can not even make an intelligible sentence.....yet in her mind she has told you a complete thought. The frustration that I see is intense. I try to make it easier by asking her yes & no questions but she inisists on trying to get out complete thoughts. It is awful and I am told it will only get worse as time goes on. MattSubject: Re: Re: Cellcept and depressionTo: Neurosarcoidosis Date: Thursday, January 7, 2010, 7:40 PM

LOL! Where are you at? I know Australia is opposite the States.

Ask for Neuropsych testing. This form of testing can show what parts of the brain are being effected by the sarcoidosis, and it can really help to understand what it is that is going on. For me, I have a form of early dementia (I'm only 52) and the frontal lobe--executive cortex where problem solving, multitasking, personality, sexualtiy, emotions, speech are all effected. It's worse just prior to my Remicade infusions-- but around my house, communication is an adventure... .

My family has learned that when I tell them we're having spaghetti for dinner, then state the jar of applesauce is in the cupboard-- that I'm really talking about spaghetti sauce. It is at least on the "red" train-- red apples, red tomato sauce--hmm, applesauce isn't red... Oh well..

I also have a hell of a problem at a restaurant when the waitress gives me a bunch of choices for drinks-- instead of asking "what would you like to drink." If she says, do you want coke, pepsi, tea, coffee-- I can't figure it out.

Every now and then, I'll go to make something-- brownies for instance, and put the dry batter in the dish I'm going to bake them in-- instead of a mixing bowl, and I'm screwed. I can't figure out what to do next--so or Torey will come home and see it sitting there, with me frustrated to hell-- and I know what is amiss- I just can't figure out what to do about it.

Anyway, Npsych tests require specific parts of the brain to function to complete the task-- and when you can't-- they can get a clearer picture of what is going on. The crazy part is that one day you can do that task, and the next-- you can't. That happens alot when it is vasculitis that is impairing the brain functions.

(Vasculitis is inflammed blood vessels.) It can be very intermittent in what is happening.

Hope this helps,

Tracie

NS Co-owner/moderator

From: rachyanne <stiks11 (AT) hotmail (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Thu, January 7, 2010 3:34:38 PMSubject: Re: Cellcept and depression

Tracie - it's summer here!I ended up in emergency yesterday after ringing my old neurology clinic. They were very good but thought maybe I have developed depression because of so long living with a chronic illness and the shock of a big move. I have to see a psychiatrist today. My neurologist just wants me to reiterate I have neurosarcoid so that they do look into whether that is the cause. Unfortunately this country hospital has no neurology department, which is why I'm keeping in touch with the one in the city.Thankyou for your responses.>> Rach,> Talk with your pharmacist. Depression isn't listed as a side effect, but with other meds we are on-- maybe it's an side

effect of

interactions. > One thing to ask yourself is are you feeling let down because you aren't getting the response you hoped for? I know for myself, that was a problem with a couple of meds I'd hope would work-- and didn't. > The other issue is that as we hit winter-- we spend even more time inside and that makes for SADD== Seasonal Affective Depression Disorder. The cure is to get out and get some daylight-- it doesn't have to be sunshine-- just even the ultraviolet rays coming through clouds help to kick the Vit D process in-- and Vit d is so very important to mental health. > Depression is an issue we all tend ot have to deal with-- many times it's from the unrelenting pain. When pain interfers with our daily life, our ability to exercise, our mobility and social life-- as well as having it disrupt your sleep cycles, you will end up depressed. Pain interfers with both

seratonin and noreprinephrine levels-- and those control emotions--and sleep cycles. Again-if your sleep is off- so it all the other stuff, and you will probably need to talk with the doc about getting on Effexor or Wellbutrin or some form of antidepressant. > This is not a bad thing-- as we get our seratonin and norep levels back in sync, much of pain and depression issues get a whole lot better. > BTW-- Cellcept does cause sleeplessness as a side effect.> I'm sure others will answer-- I've not taken Cellcept-- so I can only comment of what I can get info on as side effects and my personal experience with depression secondary to chronic pain and sarcoidosis.> Take care,> Tracie> NS Co-owner/moderator> > > > > ____________ _________ _________ __> From: rachyanne <stiks11@... >> To: Neurosarcoidosis@ yahoogroups. com> Sent: Tue, January 5, 2010 10:18:16 PM> Subject: Cellcept and depression> >  > I know there has been a lot of chat about people not responding but I really need your help on this one. I have been on cellcept for 3 weeks and have never felt so low in all my life. Has anyone else experienced this?>

[Guest guest]

Matt,

thank you. is a very blessed lady to have you in her life. It is so hard on our families, and I know how hard it is for to not be able to help me-- after all, that is what guys are supposed to do. ..

It is an adventure, and I know that when I'm in flare, as I am right now-- that I really have to pull it together to keep from making huge mistakes. My husband is threatening to take the finances back over again, and I'm hating the idea of not being able to help with one more issue.

To better days,

Tracie

To: Neurosarcoidosis Sent: Thu, January 7, 2010 8:56:06 PMSubject: Re: Re: Cellcept and depression

Tracie I will keep you in my prayers that better days might be ahead. deals with many of the same issues here. The illness has occurred primarily on the left side of her brain and has affected speech centers, mobility, reasoning etc. There are times when can not even make an intelligible sentence.... .yet in her mind she has told you a complete thought. The frustration that I see is intense. I try to make it easier by asking her yes & no questions but she inisists on trying to get out complete thoughts. It is awful and I am told it will only get worse as time goes on. Matt

From: tracie feldhaus <tiodaat2001@ yahoo.com>Subject: Re: Re: Cellcept and depressionTo: Neurosarcoidosis@ yahoogroups. comDate: Thursday, January 7, 2010, 7:40 PM

LOL! Where are you at? I know Australia is opposite the States.

Ask for Neuropsych testing. This form of testing can show what parts of the brain are being effected by the sarcoidosis, and it can really help to understand what it is that is going on. For me, I have a form of early dementia (I'm only 52) and the frontal lobe--executive cortex where problem solving, multitasking, personality, sexualtiy, emotions, speech are all effected. It's worse just prior to my Remicade infusions-- but around my house, communication is an adventure... .

My family has learned that when I tell them we're having spaghetti for dinner, then state the jar of applesauce is in the cupboard-- that I'm really talking about spaghetti sauce. It is at least on the "red" train-- red apples, red tomato sauce--hmm, applesauce isn't red... Oh well..

I also have a hell of a problem at a restaurant when the waitress gives me a bunch of choices for drinks-- instead of asking "what would you like to drink." If she says, do you want coke, pepsi, tea, coffee-- I can't figure it out.

Every now and then, I'll go to make something-- brownies for instance, and put the dry batter in the dish I'm going to bake them in-- instead of a mixing bowl, and I'm screwed. I can't figure out what to do next--so or Torey will come home and see it sitting there, with me frustrated to hell-- and I know what is amiss- I just can't figure out what to do about it.

Anyway, Npsych tests require specific parts of the brain to function to complete the task-- and when you can't-- they can get a clearer picture of what is going on. The crazy part is that one day you can do that task, and the next-- you can't. That happens alot when it is vasculitis that is impairing the brain functions.

(Vasculitis is inflammed blood vessels.) It can be very intermittent in what is happening.

Hope this helps,

Tracie

NS Co-owner/moderator

From: rachyanne <stiks11 (AT) hotmail (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Thu, January 7, 2010 3:34:38 PMSubject: Re: Cellcept and depression

Tracie - it's summer here!I ended up in emergency yesterday after ringing my old neurology clinic. They were very good but thought maybe I have developed depression because of so long living with a chronic illness and the shock of a big move. I have to see a psychiatrist today. My neurologist just wants me to reiterate I have neurosarcoid so that they do look into whether that is the cause. Unfortunately this country hospital has no neurology department, which is why I'm keeping in touch with the one in the city.Thankyou for your responses.>> Rach,> Talk with your pharmacist. Depression isn't listed as a side effect, but with other meds we are on-- maybe it's an side effect of interactions. > One thing to ask yourself is are you feeling let down because you aren't getting the

response you hoped for? I know for myself, that was a problem with a couple of meds I'd hope would work-- and didn't. > The other issue is that as we hit winter-- we spend even more time inside and that makes for SADD== Seasonal Affective Depression Disorder. The cure is to get out and get some daylight-- it doesn't have to be sunshine-- just even the ultraviolet rays coming through clouds help to kick the Vit D process in-- and Vit d is so very important to mental health. > Depression is an issue we all tend ot have to deal with-- many times it's from the unrelenting pain. When pain interfers with our daily life, our ability to exercise, our mobility and social life-- as well as having it disrupt your sleep cycles, you will end up depressed. Pain interfers with both seratonin and noreprinephrine levels-- and those control emotions--and sleep cycles. Again-if your sleep is

off- so it all the other stuff, and you will probably need to talk with the doc about getting on Effexor or Wellbutrin or some form of antidepressant. > This is not a bad thing-- as we get our seratonin and norep levels back in sync, much of pain and depression issues get a whole lot better. > BTW-- Cellcept does cause sleeplessness as a side effect.> I'm sure others will answer-- I've not taken Cellcept-- so I can only comment of what I can get info on as side effects and my personal experience with depression secondary to chronic pain and sarcoidosis.> Take care,> Tracie> NS Co-owner/moderator> > > > > ____________ _________ _________ __> From: rachyanne <stiks11@... >> To: Neurosarcoidosis@ yahoogroups. com> Sent: Tue, January 5, 2010 10:18:16 PM> Subject: Cellcept and depression>

> Â > I know there has been a lot of chat about people not responding but I really need your help on this one. I have been on cellcept for 3 weeks and have never felt so low in all my life. Has anyone else experienced this?>

[Guest guest]

Hi Rach

Tracie is amazing and l agree with her. My doc has advanced degrees in neurology, pain management, and psychiatry. She calls me every week or so to assess my pain level and mindset. Then she may or may not tweek my med regime. Tracie is spot on about Vitamin D. I take 2000 iu daily. I am new to this illness and the whole ordeal was a shock. IPain and depression are derivatives of the sarc so is a good idea to meet with a psychiatrist/psychologist This group and its owners/moderators are fantastic so don't hesitate to post your thoughts/feelings.

Subject: Re: Cellcept and depressionTo: Neurosarcoidosis Date: Thursday, January 7, 2010, 5:34 PM

Tracie - it's summer here!I ended up in emergency yesterday after ringing my old neurology clinic. They were very good but thought maybe I have developed depression because of so long living with a chronic illness and the shock of a big move. I have to see a psychiatrist today. My neurologist just wants me to reiterate I have neurosarcoid so that they do look into whether that is the cause. Unfortunately this country hospital has no neurology department, which is why I'm keeping in touch with the one in the city.Thankyou for your responses.>> Rach,> Talk with your pharmacist. Depression isn't listed as a side effect, but with other meds

we are on-- maybe it's an side effect of interactions. > One thing to ask yourself is are you feeling let down because you aren't getting the response you hoped for? I know for myself, that was a problem with a couple of meds I'd hope would work-- and didn't. > The other issue is that as we hit winter-- we spend even more time inside and that makes for SADD== Seasonal Affective Depression Disorder. The cure is to get out and get some daylight-- it doesn't have to be sunshine-- just even the ultraviolet rays coming through clouds help to kick the Vit D process in-- and Vit d is so very important to mental health. > Depression is an issue we all tend ot have to deal with-- many times it's from the unrelenting pain. When pain interfers with our daily life, our ability to exercise, our mobility and social life-- as well as having it disrupt your sleep cycles, you will end up

depressed. Pain interfers with both seratonin and noreprinephrine levels-- and those control emotions--and sleep cycles. Again-if your sleep is off- so it all the other stuff, and you will probably need to talk with the doc about getting on Effexor or Wellbutrin or some form of antidepressant. > This is not a bad thing-- as we get our seratonin and norep levels back in sync, much of pain and depression issues get a whole lot better. > BTW-- Cellcept does cause sleeplessness as a side effect.> I'm sure others will answer-- I've not taken Cellcept-- so I can only comment of what I can get info on as side effects and my personal experience with depression secondary to chronic pain and sarcoidosis.> Take care,> Tracie> NS Co-owner/moderator> > > > > ____________ _________ _________ __> From: rachyanne <stiks11@... >> To: Neurosarcoidosis@ yahoogroups. com> Sent: Tue, January 5, 2010 10:18:16 PM> Subject: Cellcept and depression> >  > I know there has been a lot of chat about people not responding but I really need your help on this one. I have been on cellcept for 3 weeks and have never felt so low in all my life. Has anyone else experienced this?>