Aa
pegasys and psychosis
I confess I'm out of my friggin' mind on this TX, not that I wasn't borderline before but these meds have introduced me to a whole new side of myself and I'm not exactly thrilled with it.
Does anyone know what it IS in the peg/riba that causes these SX?
wyntre
Does anyone know what it IS in the peg/riba that causes these SX?
wyntre
All IFNs, PEG or otherwise, carry psych warnings as their #1 caution. Riba certainly doesn't improve your mood, but it's the interferon first, last, and always. I can't tell you what the exact biochemistry is, but there has to be some kind of 'cascade' effect to all your body's systems from constantly being in a pain/fight-or-flight mode.
You probably get tired of hearing "Tell yourself it's just the drugs." "Talk to your doctor about starting/changing your AD." etc. etc.
Staying high on hydrocodone worked great for me for about 12 weeks but it was pointed out to me this has certain drawbacks. I had to spend the last half of tx going to 12 step meetings and exercising.
Hang in there.
You probably get tired of hearing "Tell yourself it's just the drugs." "Talk to your doctor about starting/changing your AD." etc. etc.
Staying high on hydrocodone worked great for me for about 12 weeks but it was pointed out to me this has certain drawbacks. I had to spend the last half of tx going to 12 step meetings and exercising.
Hang in there.
I'm on the last third of my 72 week TX so I will hang in there. I tried AD's but I don't like how they make me feel. Besides, I don't have problems every day all day.
I guess I'm just curious. Yes, I've read and reread the peg pamphlet several times.
And while I understand the interferon's affect in revving up the immune system and how that's like having the flu and accounts for many of the SX, I don't really get the connection between mood/mental state and peg.
I wonder if there IS a biochemical explanation for it?
Are you finished TX and are you SVR?
wyntre
PS - yes, I know that psychiatric disturbance is one of the top concerns when taking peg. My pharmacist, who did the injection training program with me, stressed that if I felt suicidal that I immediately call a Dr. Luckly, that hasn't happened although I have had a couple of episodes of homicidal ideation. *LOL*
I guess I'm just curious. Yes, I've read and reread the peg pamphlet several times.
And while I understand the interferon's affect in revving up the immune system and how that's like having the flu and accounts for many of the SX, I don't really get the connection between mood/mental state and peg.
I wonder if there IS a biochemical explanation for it?
Are you finished TX and are you SVR?
wyntre
PS - yes, I know that psychiatric disturbance is one of the top concerns when taking peg. My pharmacist, who did the injection training program with me, stressed that if I felt suicidal that I immediately call a Dr. Luckly, that hasn't happened although I have had a couple of episodes of homicidal ideation. *LOL*
I've been undetected since January 2003, finished tx April 2003. I'm dealing with long term effects of genotype 3, namely steatosis (NAFLD). Just had another sonogram and it looks like not much has changed from three years ago when I was first dx with this. I'm scheduled to go back to my gastro to find out if there's anything I can do for it besides diet and exercise. Also have a member of my extended family with chronic HBV which is why I started coming to this forum. The message board I usually post on is strictly HCV.
I just looked up NAFLD so I could get a handle on what it is.
Did TX cause that or was it present when you were DX'd with hep-C?
Best of luck in your recovery,
wyntrethe
Did TX cause that or was it present when you were DX'd with hep-C?
Best of luck in your recovery,
wyntrethe
It's caused by the hep. Geno 3s are more prone to it than the other genotypes. Thank you for your thoughts.
I experienced quite a rollercoaster of emotions on tx. I thought it was the riba. But whatever, it was bad and contributed to my insomnia (waking up way too early).
Knowing that a lot of the reaction is the drugs and that other people experience the same thing make it easier to deal with. As long as I don't have too much 'human' contact, I'm fine. *LOL*
wyn
wyn
I'm about to go to the pharmacy and get a zoloft script filled. I hope it helps. I think one of the thing that sucks about tx is the constant reminder that we are fighting something that could kill us. Before I started tx I barely thought about my hep, now it's numero uno in my thoughts, enough to drive anyone crazy! I just hope I can keep it together until this zoloft kicks in. Lets hear it for keeping it together WOOOHOOOO!
I'm thinkin' being alone has it's drawbacks...regarding mental state. losing my job,.....i am sleeping at all odd hours..in the day...I gotta fight the apathy and not even wanting to see anyone..isolation can be a bad thing....I gotta get up and get moving and do something about all this lack...or I won't last.
ahhh, well, that's actually a good thing to admit to!! Nothing worse than losing it, and feeling like ........"what just became of my mind and self control!!!". Odd to feel ones mouth moving, when our brain keeps saying....help I need a cork!!!!!!!
Between the definitively speedy feeling of the Riba, (yukkiest thing since I tried some No-doz once for college midterms); and the constant state of fight virus and extra INF it would be odd for the brain not to wear down like this.
The main "peace chemicals" in the brain, like seretonin, but also endorphins, enchephalins etc have very limited life spans and get used up in "greasing the signals between each cell" so to speak.
Calcium is also important to brain and nerve signaling so include some good sources of this in your diet, very few women get enough, especially post menopause because estrogen helps us hold onto calcium, and absent estrogen levels can be quite low, accounting for more nervousness/hysteria/and or paniced states of mind.
However, men also have similar reactions, and I was told many are in pools of tears on this tx that never cried a day in their life. So we know this is no walk in the park therapy.
In other words, your calming chemicals are getting used up by the excitability of the disease and the tx both, put an undo strain on the whole system. Ergo the quickest fix is an antidepressant that keeps the seretonin from being used up so fast, and keeps it available to the brain cells. Hence the name "seretonin uptake inhibitors." The uptake and using up/destroying of the seretonin is slowed down by this drug class, and therefore the mind keeps it's peaceful state. These give longer life to the chemicals we naturally make.
If they are overdone or dosed however, they can have a reverse effect, and actually become "speed-like" themselves. Ergo close monitoring and lowest possible effective dose is recommended.
Some folks will try to go the natural route with such things as Holy Basil, or St. John's Wort, but the trouble there is that these, just as pharmaceuticals have potential liver adverse effects, and also strength cannot be monitored or guaranteed with any regularity since that's an "unregulated" industry without regular purity testing and monitoring to a large extent. They also can be reactive with other things your taking so proceed with great caution if you go this route.
Also, I think it's important to not just take the hepatologists recommendation for which drug to temporarily include, but to research it yourself. Some are much more liver friendly than others.
It would be good to try to ride it out, the snaps, unless they become way too much, in which case be sure to just say to your doc that you are having some tearful moments, and/or getting too testy and snappy....and don't want to hurt others.
DO NOT tell them anything about even momentary suicidal fantasies or it becomes grounds for them discontinuing your treatment alltogether.
The thing is, there needs to be an "Uncle Point" at which each person assesses their own level of emotional stability and asks for help before things become too severe and stressful and ergo you become a danger to yourself or others.
so far, I've managed with mostly just prayer, however not all believe or can avail themselves of this. In any case when acute pain combines with strong tx drugs and emotion sometimes a small dose on ativan is helpful. This should only be a once in a great while thing though, if your mind is racked daily then something that builds up like an AD and helps may be needful.
Just make sure that if you do go to an uptake inhibitor that you not only build up the dose slowly but also WEAN yourself back off them the same way or it causes big probs.
I'm glad you asked the question, hang in there!
Between the definitively speedy feeling of the Riba, (yukkiest thing since I tried some No-doz once for college midterms); and the constant state of fight virus and extra INF it would be odd for the brain not to wear down like this.
The main "peace chemicals" in the brain, like seretonin, but also endorphins, enchephalins etc have very limited life spans and get used up in "greasing the signals between each cell" so to speak.
Calcium is also important to brain and nerve signaling so include some good sources of this in your diet, very few women get enough, especially post menopause because estrogen helps us hold onto calcium, and absent estrogen levels can be quite low, accounting for more nervousness/hysteria/and or paniced states of mind.
However, men also have similar reactions, and I was told many are in pools of tears on this tx that never cried a day in their life. So we know this is no walk in the park therapy.
In other words, your calming chemicals are getting used up by the excitability of the disease and the tx both, put an undo strain on the whole system. Ergo the quickest fix is an antidepressant that keeps the seretonin from being used up so fast, and keeps it available to the brain cells. Hence the name "seretonin uptake inhibitors." The uptake and using up/destroying of the seretonin is slowed down by this drug class, and therefore the mind keeps it's peaceful state. These give longer life to the chemicals we naturally make.
If they are overdone or dosed however, they can have a reverse effect, and actually become "speed-like" themselves. Ergo close monitoring and lowest possible effective dose is recommended.
Some folks will try to go the natural route with such things as Holy Basil, or St. John's Wort, but the trouble there is that these, just as pharmaceuticals have potential liver adverse effects, and also strength cannot be monitored or guaranteed with any regularity since that's an "unregulated" industry without regular purity testing and monitoring to a large extent. They also can be reactive with other things your taking so proceed with great caution if you go this route.
Also, I think it's important to not just take the hepatologists recommendation for which drug to temporarily include, but to research it yourself. Some are much more liver friendly than others.
It would be good to try to ride it out, the snaps, unless they become way too much, in which case be sure to just say to your doc that you are having some tearful moments, and/or getting too testy and snappy....and don't want to hurt others.
DO NOT tell them anything about even momentary suicidal fantasies or it becomes grounds for them discontinuing your treatment alltogether.
The thing is, there needs to be an "Uncle Point" at which each person assesses their own level of emotional stability and asks for help before things become too severe and stressful and ergo you become a danger to yourself or others.
so far, I've managed with mostly just prayer, however not all believe or can avail themselves of this. In any case when acute pain combines with strong tx drugs and emotion sometimes a small dose on ativan is helpful. This should only be a once in a great while thing though, if your mind is racked daily then something that builds up like an AD and helps may be needful.
Just make sure that if you do go to an uptake inhibitor that you not only build up the dose slowly but also WEAN yourself back off them the same way or it causes big probs.
I'm glad you asked the question, hang in there!
im feeling extra burned out right now as well.
i have found that if i feel bad, smoking marijuana, in many cases
makes me feel even worse and more depressed.
i havent tried the AD's but feel i can make it without them.
it might be worth your effort to try all the flavors of AD's.
apparently they have made it much easier for many around here.
i describe my current state as "punch drunk", although i have had a few good days lately. at week 50 we have earned the right to say that we are sick and tired of being sick and tired! i consider that a pretty colorful stripe for our warrior uniforms. just think about it, 20 or 30 or 40 weeks ago we felt like week 50 was 100 million light years away and yet we made it. we are still here and complaining loudly, this is a good sign! of course, none of it is any fun, but its not supposed to be. we are all slowly
passing the test and earning our degree and eventually our freedom.
lets hear it for all the brave warriors who know no fear!
YYYEEEAA
ps you asked about my riba dosage last time, its 1400 and i weight 160.
thats about a 50% overdose, im hoping it helps.
i have found that if i feel bad, smoking marijuana, in many cases
makes me feel even worse and more depressed.
i havent tried the AD's but feel i can make it without them.
it might be worth your effort to try all the flavors of AD's.
apparently they have made it much easier for many around here.
i describe my current state as "punch drunk", although i have had a few good days lately. at week 50 we have earned the right to say that we are sick and tired of being sick and tired! i consider that a pretty colorful stripe for our warrior uniforms. just think about it, 20 or 30 or 40 weeks ago we felt like week 50 was 100 million light years away and yet we made it. we are still here and complaining loudly, this is a good sign! of course, none of it is any fun, but its not supposed to be. we are all slowly
passing the test and earning our degree and eventually our freedom.
lets hear it for all the brave warriors who know no fear!
YYYEEEAA
ps you asked about my riba dosage last time, its 1400 and i weight 160.
thats about a 50% overdose, im hoping it helps.
(I shortened your names coz I couldn't fit all the characters in the "to" line;)
Jamimapuddle,
I saw your profile and 'm so sorry you got hep-c at such a young age. At least that's a plus regarding treatment (trying to look on the bright side).
I went on AD's around week 16 and stayed on them for the next few months. They did help me cope with things and I hope the zoloft works for you.
I've since weaned off prozac and I'm hesitant to start anything else as I have (ONLY) 22 weeks left.
Ladywhy,
I didn't want to leave you with the impression I'm totally alone. I mean, i do live by myself and I'm in a new place (6 months full-time now in what was formerly my summer cottage) but even with the SX and health problems I have met a few nice people from a local artist's group and a couple of locals who for a nominal sum will help me out with the things I can't do right now, like lawn care, snow removal, moving things, etc.
I am very independent and I guess I just feel more comfortable going through this TX alone, especially since I've been single for quite a while and I really prefer it. (for me, I mean).
I also have a teeny kitchen so I go out to breakfast or lunch 3 or 4 times per week and have gotten to know the regular customers there.
You're right that too much isolation can be a bad thing but I look at it as a temporary condition and have actually treasured the time.
You're at week 35 or so, right? What are your plans for the rest of treatment?
wyntre
Jamimapuddle,
I saw your profile and 'm so sorry you got hep-c at such a young age. At least that's a plus regarding treatment (trying to look on the bright side).
I went on AD's around week 16 and stayed on them for the next few months. They did help me cope with things and I hope the zoloft works for you.
I've since weaned off prozac and I'm hesitant to start anything else as I have (ONLY) 22 weeks left.
Ladywhy,
I didn't want to leave you with the impression I'm totally alone. I mean, i do live by myself and I'm in a new place (6 months full-time now in what was formerly my summer cottage) but even with the SX and health problems I have met a few nice people from a local artist's group and a couple of locals who for a nominal sum will help me out with the things I can't do right now, like lawn care, snow removal, moving things, etc.
I am very independent and I guess I just feel more comfortable going through this TX alone, especially since I've been single for quite a while and I really prefer it. (for me, I mean).
I also have a teeny kitchen so I go out to breakfast or lunch 3 or 4 times per week and have gotten to know the regular customers there.
You're right that too much isolation can be a bad thing but I look at it as a temporary condition and have actually treasured the time.
You're at week 35 or so, right? What are your plans for the rest of treatment?
wyntre
So good to heat from you, brassman!
I'm actually doing fairly good with the depression issue. The thing that makes me most depressed is the physical limitations, the knowing I have to pace yourself, the having one's life revolve around TX.
"i havent tried the AD's but feel i can make it without them.
it might be worth your effort to try all the flavors of AD's.'
I tried a couple and a don't like h0w they make me feel. besides, I didn't start this thread to complain about my suffering but to inquire about the chemical causes of the mood swings.
If I felt agin the way i did months 4 - 6 I'd be back on AD's in a heartbeat.
"at week 50 we have earned the right to say that we are sick and tired of being sick and tired!"
Go Exteneders!
" we are still here and complaining loudly, this is a good sign!"
Are you saying that some of us complain louder and more frequently than others? *LOL* Like I said, i didn't start this as a whine thread but more in response to several other recent posters who are either experiencing these sx first hand or have loved ones going through TX. (Not that I can't complain with the best of them. :)
" you asked about my riba dosage last time, its 1400 and i weight 160.
thats about a 50% overdose, im hoping it helps"
That's 200 mg more than me. that's a lot! I'm surprised you're still able to drag yourself to the keyboard much less type a coouple of sentences.
My last shot is May2. When's yours?
wyntre
ps - Thanks Merry for the chemistry lesson. :)
I'm actually doing fairly good with the depression issue. The thing that makes me most depressed is the physical limitations, the knowing I have to pace yourself, the having one's life revolve around TX.
"i havent tried the AD's but feel i can make it without them.
it might be worth your effort to try all the flavors of AD's.'
I tried a couple and a don't like h0w they make me feel. besides, I didn't start this thread to complain about my suffering but to inquire about the chemical causes of the mood swings.
If I felt agin the way i did months 4 - 6 I'd be back on AD's in a heartbeat.
"at week 50 we have earned the right to say that we are sick and tired of being sick and tired!"
Go Exteneders!
" we are still here and complaining loudly, this is a good sign!"
Are you saying that some of us complain louder and more frequently than others? *LOL* Like I said, i didn't start this as a whine thread but more in response to several other recent posters who are either experiencing these sx first hand or have loved ones going through TX. (Not that I can't complain with the best of them. :)
" you asked about my riba dosage last time, its 1400 and i weight 160.
thats about a 50% overdose, im hoping it helps"
That's 200 mg more than me. that's a lot! I'm surprised you're still able to drag yourself to the keyboard much less type a coouple of sentences.
My last shot is May2. When's yours?
wyntre
ps - Thanks Merry for the chemistry lesson. :)
I'm pretty sure I'm at week 40 now....'cause I think 1'm 10 weeks behind you and cruel.
Gonna see Dr on the 17th (not np)...see what happens...hopefully I'll be able to discuss intelligently my concerns...bring studies with me...etc. etc.. I am gearing myself up to throwin' in the towel. I was actually drawing my conclusion about being alone from my personal experience. I used to be rather social...and I know that it's good to be around others....that's was me. Now...I have no desires.....jus' trying to get through another day. Ihave not seen anyone in weeks...not even the mailman. I have lived alone for quite some time and have no problem with my own company.... The situation as of now..there is nothing I can do to change it. I have to trust there is a higher purpose and at this time I am being (as scripture states) refined by fire.
Gonna see Dr on the 17th (not np)...see what happens...hopefully I'll be able to discuss intelligently my concerns...bring studies with me...etc. etc.. I am gearing myself up to throwin' in the towel. I was actually drawing my conclusion about being alone from my personal experience. I used to be rather social...and I know that it's good to be around others....that's was me. Now...I have no desires.....jus' trying to get through another day. Ihave not seen anyone in weeks...not even the mailman. I have lived alone for quite some time and have no problem with my own company.... The situation as of now..there is nothing I can do to change it. I have to trust there is a higher purpose and at this time I am being (as scripture states) refined by fire.
I am not the type of person who would dream of taking an AD. However doc said I would have a horrible time without it. I ve tried a couple of them and also didnt like the way they make me feel. Until CELEXA. Terrific pill. NO sx whatsoever. It really take the edge off of things.
Be good.
Charm
Be good.
Charm
I'm relieved to hear you sounding OK!
I forgot all your stats but I thought there was an issue about a month ago about whether or not you should continue TX. Aren't you also a slow responder?
I have to go out nearly every day for things I don't have the space for in the cottage and I do enjoy those excursions but I'm quickly exhausted.
Refresh my memory about your TX, please. (If you feel like it).
wyntre
I forgot all your stats but I thought there was an issue about a month ago about whether or not you should continue TX. Aren't you also a slow responder?
I have to go out nearly every day for things I don't have the space for in the cottage and I do enjoy those excursions but I'm quickly exhausted.
Refresh my memory about your TX, please. (If you feel like it).
wyntre
Throughout, many knowledgeable people here have advised me to stop tx. My Hep. Dr. does not advise this...or the np. I was supposed to get a PCR this week...gotta go by Tues. 4 sure. Instead of stopping tx, my dr. prescibed 180 pegasys 2x a week starting around 25 weeks at that time vl was 1350. I have been taking 1400 mg. of riba since around my 10th week..SoC was 1000 mg. I don't think I can do this again...if I could get ahold of Alinia...I'd do it now...be a lab rat. I just want to get this over. I txed w/ monotherapy Inton-A, Another time with Interferon/Riba bundles (clincal trials) something like 11 years ago. I thought UND was cured...did not return for PCR's or anything. So I kept my head in the sand for mnay years and in 10 years i went from Zero liver damage to grade 2 and Fibrosis stage 2-3. Not a smart move on my part....not returning to have tests done...oh well, I'm somewhat of a procrstinator..............ya might say.
I remember now.
Hey, doing peg twice a week might make you toxic to others as well as poisoning you, so you're probably doing everyone a favor by keeping your distance. *LOL*
I noticed that last summer I didn't get one mosquito bite. I figured the peg was providing me with natural insecticide.
Seriously, I don't know how you're getting through this marathon TX with the increased peg and riba but if your Dr, advises you to continue and you are comfortable with him then that's what you should do,IMHO, or go for another opinion.
Were you originally scheduled for the 48 week TX?
wyn
BTW - that's a sobering statistic you cited: going from 0 liver damage to Stage 2 in ten years.
Hey, doing peg twice a week might make you toxic to others as well as poisoning you, so you're probably doing everyone a favor by keeping your distance. *LOL*
I noticed that last summer I didn't get one mosquito bite. I figured the peg was providing me with natural insecticide.
Seriously, I don't know how you're getting through this marathon TX with the increased peg and riba but if your Dr, advises you to continue and you are comfortable with him then that's what you should do,IMHO, or go for another opinion.
Were you originally scheduled for the 48 week TX?
wyn
BTW - that's a sobering statistic you cited: going from 0 liver damage to Stage 2 in ten years.
Not one mosquito bite this summer..I remember joking around with someone about marketing the stuff as an insecticide :} A bit on the pricey side though...
Yea...originally 48 weeks....if I continue...it could alot longer......just have to wait and see....like all of us. The waiting game.
SVR seems to be just outta my grasp
y
Yea...originally 48 weeks....if I continue...it could alot longer......just have to wait and see....like all of us. The waiting game.
SVR seems to be just outta my grasp
y
I have been through the whole depression, even had some severe episodes on TX's in the past, where I got dangerous in my depression, (i.e. suididal ideas), but fortunately, thanks to the good Lord and lot's of people praying for me, I didn't go over the edge. Wyn, I, like you, don't like A/D's. In the past, at various points in time, I've tried 10 different ones and didn't like any of them because they all caused me to feel unlike myself (worse than the depression), and various other unpleasant side effects. I think you remember, that at the moment, I'm not currently treating. I, too, live alone. I have for most of my adult life. My son has been out of the home since age 15 since he suffers with another type of serious mental illness and my husband does not live with me. So, I obviously, go online quite a bit. I hope that you feel better soon. Don't let it get too out of control before you seek a friend, a prayer chain, a counselor, etc. I admire you for doing 72 weeks, even I didn't treat for that many weeks. Susan
Wow. I guess i sound a whole lot more depressed that i am. I'll have to pay more attention to how I'm phrasing things.
The thing I don't like about AD's is while they make me feel calm I can't concentrate to read, or write or even converse.
Guess I'd rather the TX SX and some mental clarity than feeling numb and in a fog 24/7.
Yes, I remember that you've treated 7 times, or was it 9?
The 72 week thing is just the (bad) luck-of-the-draw. I'm a G1 slow responder, like Cruel World, Zazza, Proactive, and I want to do whatever it takes to get the best chance at SVR. So far, the extended TX is the only thing that seems effective. NYGirl is one of the several success stories with regards to that approach.
It's kind of you to have the words to reach out to someone else when you're situation has been so difficult, Susan.
Wyntre
The thing I don't like about AD's is while they make me feel calm I can't concentrate to read, or write or even converse.
Guess I'd rather the TX SX and some mental clarity than feeling numb and in a fog 24/7.
Yes, I remember that you've treated 7 times, or was it 9?
The 72 week thing is just the (bad) luck-of-the-draw. I'm a G1 slow responder, like Cruel World, Zazza, Proactive, and I want to do whatever it takes to get the best chance at SVR. So far, the extended TX is the only thing that seems effective. NYGirl is one of the several success stories with regards to that approach.
It's kind of you to have the words to reach out to someone else when you're situation has been so difficult, Susan.
Wyntre
now that i find out this is your second round, i realize why you are pushing so hard for
success. dont be too torn up if you have to quit. i think susan 400's result with vertex ( 9 previous rounds and und in one week) is the most the most encouraging news this board has ever seen. i rest much easier knowing that if i lose this round, the big guns are coming to save all of us with tough cases. luckily at stage 2 you are not backed against the wall yet. very few people over dose on both meds, you definitely set yourself apart as a "special mission" warrior, how you maintain is a mystery to me. i salute all of those of late with discontinuation and relapse. its a long and drawn out war but we are all winning, even if it is slow as hell!
hey, your underwear in on backwards!
HA HA HA HA HA HA HA HA
success. dont be too torn up if you have to quit. i think susan 400's result with vertex ( 9 previous rounds and und in one week) is the most the most encouraging news this board has ever seen. i rest much easier knowing that if i lose this round, the big guns are coming to save all of us with tough cases. luckily at stage 2 you are not backed against the wall yet. very few people over dose on both meds, you definitely set yourself apart as a "special mission" warrior, how you maintain is a mystery to me. i salute all of those of late with discontinuation and relapse. its a long and drawn out war but we are all winning, even if it is slow as hell!
hey, your underwear in on backwards!
HA HA HA HA HA HA HA HA
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